Living Well with Lupus

The stuff that dreams are made of

2010-02-24T06:26:00.000-08:00

Just after promising more regular posts, I once again disappeared without trace but this time I make no apologies, as I have the best reason in the world ...

I am delighted to announce that 'Flint Leonard Seale' our beautiful baby boy was born safely on 11th Feb at 05.35. To say we are 'over-the-moon' is understatement of the year and even two weeks later we still have to pinch ourselves to believe it is true!

I was incredibly lucky as, as I explained before, many of the symptoms that make pregnancy a particularly challenging time for 'loopies' are not ones that affect me; but I am pleased to say that the problems that did arrive were managed carefully by the excellent team of doctors and midwives looking after us, so both Flint and I emerged from the whole experience in good shape.

With hindsight and experience I have gathered some thoughts on things I believe help me get through pregnancy and birth that I will post next time in case they are of help or interest to other 'loopies'.

With our little 'bundle of joy,' who has already established himself as 'king of the castle' in our house, time has become incredibly limited (I am still working out how to find time to brush my teeth and get dressed each day, let alone anything else!) posts may be few and far between for a while, but I will be around so keep your eyes open and keep in touch. I may also see if I could enlist some guest Living Well with Lupus bloggers to offer their contributions.

In the meantime I need to find a Living Well with Lupus 'moral' to this post.

I guess it has to be: however bad things can be sometimes with lupus, never allow it to make you doubt or give up your dreams and hopes. After all ... "you've got to have a dream because if you don't have a dream, how you gonna have a dream come true?!" - mine certainly did with the arrival of Flint, my little 'spark of light'.

‘Hats Off’ to the Dr Hajela’s of this World!

2010-02-06T20:36:00.000-08:00

Finding a doctor ‘packed’ with the right qualities makes a world of difference to Living Well with Lupus ...

Last week I went for my routine appointment with Dr Hajela, the Rheumatology Consultant whose care I have been under for some years now. At the end of a positive consultation which confirmed the continuation of the recent improvement in my health lupus-wise, Dr Hajela informed me that he and his family are moving away from London so he will no longer be working at Lewisham Hospital. In other words: he will no longer be my consultant.

When I heard this news, whilst I was very pleased for him and his family, from a personal perspective, I was very sad and to be honest, somewhat unnerved. The reason is that I can honestly say that Dr Hajela has played a vital role in enabling me to obtain a good quality of life and to achieve a degree of stability that once seemed may never be possible; not to mention that we (me, my husband and my family) are acutely aware that it was his brave professional decisions at critical times that saved my life (in the most literal sense) on more than one occasion.

Talking to other ‘loopies’ reveals that the period before lupus is formally diagnosed is very often one of the hardest because an array of seemingly unrelated symptoms plague you on and off, some of which you dismiss yourself or put down to other things and within the medical profession, you are passed from ‘pillar to post’ often feeling disbelieved or as if you are ‘making a fuss’ or that you are being dismissed as a ‘hypochondriac’. With a condition that is as complex and difficult to diagnose as lupus, it is often not until you are lucky enough to come across a highly competent doctor who takes you seriously that you can get a handle on what is happening and do something about it. For me, Dr Hajela was the man who did this. By simply believing me and working continuously to help throughout the ups and downs, he has been a rock for me during the most difficult times of my life.

Ultimately it is excellent doctors like this that play a huge part in enabling people with lupus to ‘live well’, so I thought it might be helpful to try and identify the qualities that make the difference. I found that for a doctor that is going to move you forward, what you are looking for is one like Dr Hajela that combines the whole ‘PACK’ of skills. These are:

Professional
Accessible
Caring and Compassionate
Knowledgeable

Although having read this list you may think it sounds a bit simple or even excruciatingly obvious, in reality finding doctors that actually embody all these qualities can be difficult. They can sometimes seem like a rare breed but Dr Hajela taught me that they do exist and over the years, where necessary, he has also referred me to other specialists who I find similarly equipped with the same particular ‘PACK’ of skills. Such doctors are a credit to their profession.

As sad as it is to be losing Dr Hajela when we concluded our final consultation last week, we both agreed that in many ways it couldn’t be a better time for a ‘farewell’. He leaves knowing that for this patient at least in many ways his work is done. I am no longer ignorant about having lupus and have been taught to watch out and respond to the signs myself so it never need escalate out of control as it once did. He has identified the best set of medications to control my symptoms and I am now able to lead a life that is not completely dominated by lupus and I am at the end of the final trimester of what has amazingly been described as an ‘unremarkable pregnancy' (!) so in a few weeks, all being well, we will be embarking on a new family life. Without Dr Hajela’s help and support it is highly probable that Tony and I would never have had the chance to fulfil this dream.

Many thanks and good luck Dr Hajela!

Changes and Voyages of Discovery

2010-01-23T06:30:00.000-08:00

To anyone who has been checking in and wondering why Living Well with Lupus ground rather rudely to a halt in November last year, I can only apologise and explain that the final trimester of pregnancy has been rather more eventful than I would have liked ...

Shockingly, my usually ‘picture of health’ strapping husband Tony suddenly became very ill himself at the end of November and it has lasted rather longer than we would have hoped, coinciding with the chaos of the festive season and beyond. All of a sudden we found ourselves in a weird ‘role reversal’, where I experienced how it feels to be ‘carer’ (a full on job, hence the absence of any Living Well with Lupus posts) and he got to experience what it’s like to be an energy drained ‘patient’. If nothing else it’s been an insightful time and given us a much deeper empathy of each other’s position. Suffice to say both of us discovered that both roles are far from fun. Thankfully, he is gradually recovering now and is back at work (although working from home which means he is using the laptop during the day and by the time he has finished ... well put it this way, when it comes to bedtime I beat my Granny’s early nights, so please forgive me if I am a little remiss for the next few weeks!)

As for the lupus throughout all this, it’s had its usual ‘ebbs and flows’ which have been carefully monitored by my doctors and my medications have been adjusted accordingly and although I am exhausted, I seem to have survived these turbulent times, and miraculously this pregnancy fairly unscathed so far.

When I say ‘miraculously’ that is exactly how I feel because not long after my wedding in 2006 on my 31st birthday when I sat in hospital being infused with cyclophosphamide the prospect of ever being able to start a family seemed remote to say the least. It is with this in mind that I say to any 'loopy' in this position now (although I acknowledge it may feel hard to believe): I am not talking about 'miracles', but I do believe that with due patience and care and it does take time, it is usually still possible to find ways to get what you want from life regardless of lupus as it's a condition where things are rarely set in stone.

Anyway, with all this behind us it is only now that we are all just beginning to accept that 'if we have a baby’ might possibly be becoming 'when we have a baby’, and the whole thing is looming on us - fast. Just four weeks to go! The ‘grandmums’ have both even dared allowed themselves to buy their first baby purchases.

So, how does it feel? Mostly we are just very excited, but in terms of Living Well with Lupus being parent raises a host of new questions (and thanks to you for some of the advice you have already passed on - it's good to feel there is a 'loopy mum' network out there!). How we will manage? Sleep deprivation is a massive problem for any new parent, but when you throw ‘lupus haze’ into the mix and I wonder how ‘loopy’ Mum’s survive?

The other question is how to explain the illness and its consequences to a child?

As if in direct answer to this particular question, I was delighted to hear of a new children’s book ‘Mama, Won’t You Play with Me?’. It’s written by a ‘loopy’ Mum called Meg Walsh who herself had to grapple with the problems of lupus whilst raising her family. Meg Walsh explains on her website that the story helped her children understand the importance of love and family as they could strongly identify with the central character 'Dudley the Duck'.

So, if all goes well, I am certainly going to order a copy and make sure it is on the bookshelf ready for our little one as it grows. Not only will it be a good way to help start explaining, but Meg Walsh will be donating a portion of the proceeds of book sales in May to the Lupus Foundation of America – all good stuff.

Little things, big difference

2009-11-26T02:51:00.000-08:00

Looking back, working out how to ‘live well with lupus’ has taken yonks, and really it’s an ongoing process: I’m always looking for ways to make life with lupus work better.

Still, without a shadow of doubt, over recent years I have become much better at it and lupus features far less centrally and aggressively in my life than it was before. Thinking about how this has come to be; whilst there have been the ‘big milestones’ of change such as getting proper diagnosis and developing a more accepting and realistic attitude; there have also a few little, often seemingly trivial things that have really helped improve things significantly.

Here I list 10 of the ‘little’ things that have made big differences in making my life with lupus much easier :

1. DVD box sets
Ideal minimal effort distraction anytime, but especially when lupus forces any social life out the window and perfect for getting 'lost' in another world when you are fed up with your own! We’ve happily lost ourselves in Lost, 24, Six Feet Under and even The Barchester Chronicles! At the moment it’s The Wire ...

2. Help with cleaning
I was always embarrassed about getting help with cleaning (especially as, thanks to my Granny’s genes, I’m a bit of a cleaning-obsessive) and I felt it was something I should be able to do myself. Nonetheless, once the realisation dawned on me that in a situation where energy is such a precious commodity and that it’s a tragedy if every bit of it is used up on household chores and contributes to a worstening health situation; I felt a whole lot better about getting some help. Having someone to helps give ‘peace of mind’ at times when it starts to feel impossible to keep up with the pace of life. If money is an issue and regular domestic help is out the question, it's worth just getting someone in on an ad hoc occasional basis when you are really struggling, or seeing if a friend or family member minds giving you a hand around the house next time they ask if there is anything they could can do to help. It removes a pressure you could really do without.

3. Dispensing medicines for the fortnight ahead
When I started to put an hour aside at the beginning of the week, once every two weeks, to dispense my daily medicines for the fortnight ahead, it really allowed me not to have to spend so much time each day thinking about lupus whilst riffling with different drug boxes. Now I barely think about it at all as my medicines are ready to take each day, I just swill them down with my tea at breakfast and it’s as routine as brushing my teeth.

4. Getting email addresses for doctors
This was a revelation I stumbled across accidentally but once I did, I discovered that making contact with consultants and GP’s needn’t be a painful experience. If you can get hold of an email direct to your doctor it is great. You know your message will be read by the right person and you don’t have to waste hours having unsatisfactory conversations with moody medical secretaries, wondering if your message was ever passed on. Now I get satisfactory answers to my questions sent directly to my inbox without any hassle.

5. Disposable hand & foot warmers
If you have Reynaud’s: get some. Quite simply they are the best answer. They keep you warm, save you embarrassment and, all-in-all, in winter I never leave home without them.

6. Finding an excellent hairdresser
When you feel rotten, the last thing you need is to look rotten. Someone who can make you feel better about how you look, and who can help even when the situation is dire such as when your hair is dropping out, is worth their weight in gold. In terms of improving my wellbeing my hairdresser Kate is arguably ‘up there’ with my best consultant! It is also for this reason I am a huge supporter of Trevor Sorbie’s new charity ‘My New Hair’:

http://www.mynewhair.org/

7. Prescription prepayment card
If you live in the UK and have lupus – get one. I discovered it saves a fortune.

8. Doing something nice for someone else
Since lupus started putting obstacles in my way I’ve had to rely on the patience, kindness and generosity other people far more than I did before and far more than I feel comfortable with - after all, I always prided myself on being an independent kind of girl and someone who likes to help other people. I’m sure many a ‘loopy’ can relate to this. I now find that by consciously doing simple acts of kindness, however big or small, even when I'm low, helps ease this sense of imbalance in relationships a bit. I find that even something as small as smiling at someone warmly or looking people in the eye and thanking them properly, sending a card to a friend out the blue or listening to someone who needs to talk, makes me and them feel at least a small notch sprightlier, and such things are easily possible even when you are at a low ebb.

9. Yoga ‘Circle of Joy’ sequence
As you know, I believe yoga is highly beneficial for lupus and this easy little sequence of yoga postures combined with proper breathing can be done seated or standing and helps with all sorts of things that often affect ‘loopies’. It is calming and stabilising (try it next time you are feeling worried or panicky), and it reduces tension, loosens the shoulders as well as providing relief from headaches.

The only demo I can find is posted on You Tube by an Ozzy yoga school called Ten Toes, but remember it can also be done sitting on a chair or standing (and you are not obliged to have to have ethnic music and statues in the background!) :

http://www.youtube.com/watch?v=UzQ_qWAEQbo

You can also find it clearly explained in a book by Peter Van Houten MD & Rich McCord PhD called Healing Therapies for Headache Relief

10. Family Secret Santa
The festive season is approaching and whilst I abhor ‘bar-humbug-Christmas cynicism’ I must admit I do find it challenging from a lupus perspective. It gets so busy - dauntingly so; and comes with a high degree of pressure to fulfil lots of expectations; and, it’s all at a time when winter bugs are rife.

A couple of years ago my family started a ‘Secret Santa’ system, which in spite of my initial scepticism, has worked brilliantly. We each buy one significant present for another member of the family, either a surprise or a specific request, rotating each year. The result is, as well as reducing the stress of Christmas shopping for loads of presents, we now each get something we really want, as opposed to lots of what often ultimately becomes 'charity shop clutter', because your buyer’s entire Christmas budget is spent exclusively on you! I’ve got my sights on a rather stylish handbag this year ...

So, they are just some of the ways I've discovered how little life ‘tweaks’ can make big differences ... how about you?

Cautious Optimism

2009-11-19T01:04:00.000-08:00

Perhaps one of my first pieces of advice to anyone newly diagnosed with lupus is to be highly wary of anything you read on the internet, especially regarding ‘miracle cures’. It is a simple fact that, as yet, a cure does not exist (if there was I’d be straight onto it – wouldn’t you?!) and there is no one natural, chemical or dietary ‘answer’ to SLE, whatever bold claims are irresponsibly made in cyberspace. The sad truth is such claims are usually made to get some money out of you – you have to buy a book or some pills or something - and I think they are designed, intentionally or not, to exploit people when they are feeling vulnerable.

It is with this in mind then that I am always very cautious about trusting new medications that are as yet unproven, but there are two developments on the pharmaceutical front that have been drawn to my attention that I feel may warrant at least keeping a cautious but hopeful eye over. This is because both drugs (‘Lupuzor™ and ‘Benlysta™’) have been developed and tested by what are I believe are well known and reputable pharmaceutical companies and both seem to be reporting very positive results in clinical trials

Check out:

http://www.londonstockexchange.com/exchange/prices-and-news/news/market-news/market-news-detail.html?announcementId=10279990

http://www.lupusresearch.org/about/press-room/press-releases/new-study-findings-represent.html

So, whilst there is still a long way to go and it is worth remembering drugs often fall down at the last hurdle revealing fundamental flaws, I think it is reasonable to keep our eyes open to the progress of both these trials. Anyway, at least let's keep our fingers crossed because it is always nice to feel there is a glimmer of hope, especially on those more challenging days. After all, as my personal favourite ‘dude of the moment’, Thich Nhat Hanh the Vietnamese Buddhist and activist, says:

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”

"Change is the only constant"

2009-11-11T06:01:00.000-08:00

Well, who would ever have believed it? This week I am 25 weeks pregnant, which means I’ll soon be entering the third and final trimester and as far as the pregnancy goes, so far I have been incredibly lucky. Of course with the hormone surge of the first trimester there was a flare and some of the inevitable winter colds have caused a bit of ‘lupus stir’ here and there, but, so far, with a dedicated effort to look after myself properly along with adjustments to my medication, these symptoms have been well contained. So, at the moment, all I can say is that at, least for now, I am feeling pretty OK overall.

My consultant explained that the probable explanation for this general improvement is because the immune system is naturally lowered slightly during pregnancy in order to stop the body from rejecting the unborn baby – (although I have been warned another flare is possible in the later stages and post-birth period) – and ‘less is definitely more’ for us ‘loopies’ when it comes to immune system action! I am also lucky enough not to have the lupus symptoms that make pregnancy particularly problematic e.g. sticky blood and renal involvement. Personally I suspect it may also be because I have probably been better at taking care of myself than usual because I now consider myself ‘doing it for the baby’ which, wrongly or rightly, seems to get top priority more easily. Anyway, whatever the reason I am delighted for the respite.

Now please don’t get me wrong. I am in no way complacent. Certainly news of my relative good health is likely to be of little consolation to any ‘loopy’ out there right now who is really going through the mill. I know from experience that tales of other people’s ‘releases’ from the worst confines of lupus is of little consolation when there seems no end to your own misery and you can see no light at the end of the tunnel. I understand this because I had what seemed like an eternal stretch of being incredibly poorly, where I was in and out of hospital and up and down the path to what felt like hell. Even after emerging from this, I never managed to return to full ‘wellness’ as I’d known it in the past but entered a phase of what can best be described as ‘containment’. I know there are always times of being very cynical about ever being ‘released’.

It was especially hard as having children was something I had started to feel could never happen. Tony and I had always planned to have a family of our own one day and had often discussed our hypothetical children, what we would do with them when they were born, and what we might call them, in the days long before we had even heard the word ‘lupus’. So after we were married and my health came crashing down; when things became so uncertain we were told that children might well be out the question; it was a bitter pill to swallow. Certainly both mine and Tony’s parents had long since written off their dreams of becoming grandparents (at least to any children of ours) and even now my longstanding (and favourite) consultant shows signs of being surprised, albeit pleasantly so, that I’ve come this far.

It is therefore only with all this very much in mind that I am reporting the recent improvement and getting real joy from the acrobatic lump affixed to my front. Still, I realise that there is a long way to go yet and that things could easily change. My experiences have taught me that never take anything for granted with lupus and that life is truly fragile and transient, so I make a conscious effort to try not to worry about what has happened in the past or what will happen in the future.

With all these lessons behind me I now find it helps me to remember that lupus is a fickle changeable disease. It rarely stays the same forever; in fact, not much does; feelings and moods constantly change as does medical-science; and all these things can impact on life with lupus. I now understand that there are likely to be bad times, better times and even good times when lupus is more of a shadow.

So the advice given to me by a number of inspiring ‘loopies’ out there - to ‘take each day as it comes’ - is spot on and vital to Living Well with Lupus and remember each day things change. This involves accepting the hard times with grace whilst trying to do everything possible within your power to improve things for yourself - and being incredibly grateful for the good times when they come, making sure you enjoy every minute as I am now ...

Yoga and Lupus: An introduction

2009-11-02T09:12:00.000-08:00

Why 'loopies' should be prescribed yoga

Anyone reading this blog may well have picked up on my enthusiasm for yoga, so I thought it was about time I put something into words to explain why I ‘harp on’ about it so much in this blog.

My Mum practiced yoga when I was a little girl so I grew up with it, although in truth I didn’t start practicing regularly myself until my late 20’s, but my awareness and appreciation of it certainly far predates my knowledge and experience of lupus. As I’ve never been an especially sporty type what originally attracted me to yoga is that it is so inclusive: it’s is not the exclusive domain of the fit and gorgeous! What is wonderful is that it’s for anyone and everyone, and can be practiced anywhere and at anytime (or all the time when you really get the hang of it!). I’ve always liked the fact that it doesn’t matter how young or old you are, neither does it matter what your background or personal beliefs are; nor (as I was to discover to my relief) does it matter how ‘healthy’ or ‘unhealthy’ you are. Yoga recognises that everyone is unique and different and can be tailored to the individual whatever their situation. And thankfully, unlike many regular exercise classes, I’ve always appreciated that yoga doesn’t embrace a ‘no pain, no gain’ philosophy. In fact it’s quite the reverse: it is about listening to the body and working with it.

From the start the general health benefits of yoga were also attractive. On a physical level, amongst other things yoga has the ability to help create a more toned, flexible, and strong body, to improve respiration, energy, and vitality, to help maintain a balanced metabolism, promote cardio and circulatory health and relieve pain. And, with practice, yoga is proven to have a hugely positive effect on emotional and mental health. Regular yoga practice often helps the student start to find an improved ability to relax and handle stressful situations, to focus their energy and attention more effectively, to think more positively, as well as developing greater self awareness and of the world around them. Who could knock all that?

But when lupus made its unwelcome entry into my life, yoga took on a whole new meaning. I eventually learnt that practicing yoga was quite frankly invaluable to the point that now, if I had my way, I would insist that yoga was formally prescribed by doctors along with the necessary medicines to everyone with lupus. This is because in my view there are certain core issues to living with lupus that the fundamental practices and philosophies at the very heart of yoga address. For example:

Individuality: As we know lupus is a very individual disease which is partly what makes it so complex: although the root of the problem may be the same for everyone, the symptoms rarely are and even for the individual the symptoms change and vary greatly day-to-day and over time. This is where the flexibility of yoga comes into its own for us ‘loopies’. As I explained earlier, yoga is flexible so it can be adapted to meet the needs of anyone with lupus regardless of how it is affecting them (or not) at any given time, so they can continue to practice and address the issues affecting them as and when they occur. Throughout my problems with lupus including during some of my more poorly moments, I learnt I could use yoga in some form or another to my benefit.

Energy: Lack of energy is the blight of many a ‘loopy's’ life and is one of the more persistent problems. Working on creating, distributing and maintaining a healthy balance of energy and vitality (or ‘prana’ as it is known in yoga terms) is core to yoga practice and philosophy.

Flexibility and mobility: Arthritic aches and pains and flexibility are another more common lupus symptom. The gentle physical postures of yoga are proven to ease the aches and pains and improve flexibility. In spite of the impression you may have of yoga based on the misleading pictures of contortionist bodies twisted in fancy positions that are bandied around, yoga is not just for acrobats. I am certainly never going to be a bendy type of person, but thanks to yoga at least I have now restored a comfortable and respectable range of movement, my overall flexibility has certainly improved and the joint aches and pains are no longer a permanent feature of my life.

Relaxation: Stress is known to be one of the main triggers of lupus and stress and depression can also be consequences of the disease. Yoga helps us manage these things and when practiced often can help prevent them before they occur. Certainly for me I’ve discovered the equation is simple: less stress = less lupus. ‘Yoga nidra’, is a technique of yogic or 'psychic sleep' which induces deep relaxation and has the potential to help ‘loopies’ chill and manage stress. I recommend the following CD that you can try it at home as a good place to start:

http://www.yogamatters.com/product/659/cdpragynid1/deep-relaxation--yoga-nidra--vol-1.html

Pain management: Physical pain in various different shapes and forms is a common feature of having lupus and yoga teaches us techniques to manage it. A particular example in my own life that springs to mind is that I find that yoga breathing and relaxation techniques help me cope better with nasty procedures such as lumbar punctures and blood tests there are also a number of yoga postures I use to help relieve particular symptoms such as headaches.

Psychology: Much of Living Well with Lupus is about how we learn to adapt our minds to cope with the complexities of lupus. I, for one, was taken aback by the psychological impact the disease had on me when it got really out of control. Now, whilst yoga is often thought of as a mode of exercise popularised by particular celebrities, it is in fact far more. Yoga is a healing system of theory and practice: not just a set of exercises but an entire philosophy of being with the goal of achieving peace of mind and of body. I understand it as an approach to life that seeks to help the individual find a way to focus on being at one with themselves and the world around them; in lupus terms yoga can help provide a kind of constant impenetrable internal health that exists regardless of the unpredictable antics of the lupus.

Perhaps the best and most succinct explanation of how yoga can help us live a better life with lupus (or indeed without it) comes from B.K.S. Iyengar, one of the world's greatist living yoga masters explains:

“Yoga teaches us to cure what need not be endured and endure what cannot be cured”

So, I’d strongly advise anyone with lupus to give it a go. What have you got to lose? If you do decide to give it a go, it is worth noting that there are lots of different styles of yoga and classes vary greatly (I’ve been to some that are a bit too ‘out there’ for me to take seriously) but as with everything, tastes vary! So if you don’t like the first class you go to, it is definitely worth trying another. I’d personally recommend looking for either a ‘hatha’ or ‘Iyengar’ class although I reckon that ultimately a lot of it comes down to your opinion of the teacher.

NB The picture at top is me enjoying a spot of yoga practice at the top of a hill in the Peak District this summer!

Beating the Bugs

2009-10-23T04:46:00.000-07:00

More hints and tips for avoiding Swine Flu and other ‘nasties’

I wrote about my attempts to avoid infection back in January (‘Getting Bugged by Bugs’) but the issue is very much back on my agenda again for three main reasons:

1. I have just taken six weeks to get over a very minor cold. Although I thankfully managed to stem off any serious lupus symptoms with changes to my medication the cold definitely caused my immune system to spark, and therefore my lupus to stir. This is obviously a reminder of the potential that a more serious infection could have on a loopy’s wellbeing.

2. I’m pregnant

3. Next week I am off on a much anticipated girly trip to Ireland for a few days to visit a close friend who has just had her first baby, but I am rather nervous about the potential to catch something on the plane.

Maybe all this Swine flu fever is making me paranoid but not without reason. When I’ve been out and seen the number of people carelessly sneezing, coughing and ‘spraying’ without even attempting to keep their germs to themselves, instead of feeling compassion for their poor health as really I should, I feel like socking them one! The grossest thing happened yesterday when I was in the hospital getting my blood tests done. I saw a lady leave a toilet cubicle without washing her hands! It nearly caused me to wretch. I don’t care what she was doing in there: she needed to wash her hands! I am definitely behind the NHS’s ‘Catch it, Kill it, Bin it’ campaign:

http://www.direct.gov.uk/en/Swineflu/News/DG_177936

There are the obvious things and some other helpful hints I’ve been given on good authority:

Hand hygiene
Obviously – obsessively – I say no more.

Swine flu vaccination
The (reliable) word of authority is that loopies who are immune-suppressed should get the Swine Flu vaccination. The benefits outweigh the risks.For full details see:

http://www.lupus.org.uk/news/news_swineflu.htm

And it’s not just for you. If you are immune-suppressed your ‘household contacts’ are also eligible to be vaccinated as a priority in Category 3 of the NHS Swine Flu Vaccination programme. Needless to say, as soon as it arrives in the forthcoming weeks Tony’s straight down there!

For UK loopies, full details of the NHS Swine Flu Vaccination Program and the Risk Categories identified for priority are clearly outlined here:

http://nds.coi.gov.uk/content/detail.aspx?ReleaseID=407719&NewsAreaID=2&HUserID=893,776,884,851,780,684,710,705,765,674,677,767,684,762,718,674,708,683,706,718,674&ClientID=-1

Being immune-suppressed and pregnant I fall into more than one category.

Avoid touching your face
The flu virus has to get into the body somehow to grow and the most effective way is through the nose or mouth. Any infection carried on your hands is automatically transported to your eyes, nose or mouth every time you touch your face.

After having been given this advice a couple of days ago I've discovered that that this one is much easier said than done. Try it for yourself. I’m hoping it's a case of 'practice makes perfect'.

Vicks First Defence Nasal Spray
I advocated this (albeit with a degree of scepticism at the time) in my last post on beating infections and I do again with a bit more confidence as I’ve been told that it is far more effective than face masks, which can in fact make matters worse. (Yes, I'd got to the point where I was seriously considering wearing a face mask on the plane - I'm sure my travel companion Lorna will be relieved to hear I'm opting for First Defence instead!). The blurb says it works by "trapping the cold germs, making them harmless and helping your body to get rid of them naturally". Apparently the key is to use it properly. The way to do it is to be like Bill Clinton - don’t inhale! Allow it to trickle either down the back of the throat or back out your nose (lovely!) rather than inhaling it into the lungs where it has no affect. The key is it should coat your nasal passage.

http://www.vicks.co.uk/first-defence/nasal-spray/

It’s at least worth a try, especially on my plane journey.

Hot drinks
Drinking six to eight cups of fluids a day flushes mucus down into your stomach, where digestive juices destroy the toxins. Keeping the bodily fluids moving quickly out of the body gives a virus less chance to find a cosy place to grow and spread. Acidic drinks, like citrus juices and tea with lemon, also help to keep viruses at bay.

Another very good reason for putting the kettle on right now!

No more tears

2009-10-20T03:11:00.000-07:00

Don’t you find that it’s often the little things in life that make the biggest difference? A couple of weeks ago I visited the optician for my routine eye appointment only to discover that the lupus (or rather the ‘Sjögren's syndrome’: the condition that often accompanies lupus, that attacks the glands that lubricate the eyes) has recently been affecting me to the point that he felt it may be too damaging for my eyes to continue wearing my contact lenses any longer. Now although this may seem like a very small sacrifice compared to some of the others that us loopies have to make to manage the lupus, I was especially downhearted by this one. I felt like ‘crying my last tears’ – literally!

I don’t wear my contacts everyday but like to have them for certain physical activities such as yoga classes and walking where glasses steam up and get in the way: but who am I kidding? In honesty I most appreciate them for purposes of vanity. Whilst I have a reasonably nice pair of specs which I am perfectly happy to sport during general day-to-day life, when I am getting dressed up to go on a date, meet up with friends or to go somewhere special, I can’t help but feel my glasses put a dampener on things. I find that occasionally feeling you can look your best, if only once in a while, helps lift the spirits no end.

So it was with great relief that on my return appointment this week after giving the contact lenses a rest for a of couple weeks and regular use of artificial tears prescribed by my GP (Carbomer Gel 0.2%), the optician has given me the go-ahead to wear my lenses, so long as it’s restricted to ‘high days and holidays’. I am happy with that.

And for those times in between, I intend to get straight onto the new ‘geek chic’ trend that’s going on right now, for which a pair of nerdy glasses are a definite must!

Stuck Insomnia

2009-10-16T03:47:00.000-07:00

Since I last reported in I am still a touch under the weather. It is because the ‘not-too-awful-in –itself’ cold is still lurking and so causing a few lupus flare ‘warning sign’ symptoms, but my medication has been adjusted and thankfully seems to be containing things on the whole. However, an old bugaboo has reappeared: insomnia. In the past I have suffered badly with insomnia and really struggled to get on top of it. Thankfully this time it just seems to be the odd night here and there, but its reappearance is an unwelcome reminder of past experience.

Insomnia comes in different shapes and forms from periodic wakefulness, difficulty falling asleep or waking too early. For me it is a case of waking up at a very particular unearthly hour (currently 3.00am) almost as if I had a built-in alarm clock and being unable to sleep for the rest of the night until it is just about time for the real alarm clock to go off again – grrrr. When ‘Tyler Durden’, the unhinged antagonist of the film Fight Club, says “when you have insomnia, you’re never really asleep and you are never really awake” I believe he hits the nail right on the head!

Insomnia can be attributed to a number of individual things or a combination of them. To start with it is arguably a symptom of lupus itself. So yes, the inability to get nourishing sleep in a disease where one of the key features is lethargy, exhaustion and fatigue is yet another of its cruel paradoxes! Insomnia can also be a side-effect of medications taken to control the disease, Prednisolone in particular. It is probably no coincidence that my recent disturbed nights coincided with an increase in my steroid dose. I often find that this happens when my dose is increased, but that I gradually adjust to it and my sleeping pattern begins to settle again. Other possible causes of insomnia are anxiety, stress and depression which are not uncommon amongst loopies, as again they can be either symptoms of the disease itself or natural psychological responses to it. Whatever is at the root of it, it is something that seems to give grief to a lot of loopies.

I have thoroughly explored the whole gambit of practical and behavioral solutions all of which play an important part in helping ease the problem all of which help to some extent or another.

At the top of my list is (you won’t be surprised to hear!) is yoga. Because it is a holistic discipline it works on balancing all the bodies systems, so whether the insomnia has physical, mental or emotional origins it can effectively be used to prepare the body and mind for healthy sleep. To achieve this there are a number of yogic ‘tools’ that can help. These include physical postures (known as ‘asana’), breathing exercises (‘pranayama’) and meditation. I promise I will write in greater detail on ‘Yoga and Lupus’ soon, but in the meantime all I can say is find yourself a good yoga teacher now, and you will discover the benefits for yourself which will become apparent almost immediately …

Beyond this there are some other well documented ‘tried and tested’ things to do and others to avoid that I find help including: using warming aromatherapy baths / lighting aromatherapy burners / candles (my immeasurably kind Mum recently bought me Molton Brown’s ‘Cedrus Temple Soother’ and ‘Cedrus Room Aroma Rocks’ both part of their new ‘Sleep Body Therapies’ range which I have found good: http://www.moltonbrown.co.uk), comfy bedding and a slightly open window as I find fresh air helps enormously so long as I’m not cold, avoiding overdoing it with alcohol and caffeine (doable so long as I’m allowed my morning cuppa!) and doing something to clear and relax my mind just before I put my head down, for example relaxing breathing exercises, reading a chapter of a good book or flicking through a magazine (but avoiding anything that might be disturbing or challenging as these can awake the mind which is a bad idea before bed). And, as sad as it might sound in a ‘New Agey’ kind of way, I have also got a Sea CD (ie a CD recording of sea waves that the manufacturer describes as “timeless, rhythmical and ultimately soothing”: http://www.global-journey.com/nature.html) that at times has been effective in helping lull me off to sleep by kidding me I’m lying on a beach somewhere very nice and far, far away!

However, ultimately the thing I possibly find most useful is the thing that seems to be key to most aspects of Living Well with Lupus – that is ‘wrapping your head around it’ which is to modify the thoughts and perceptions I have about it.

I once had a session with a Cognitive Behavioral Therapist from which the most useful thing to emerge was learning how to challenge and actively modify some of my thoughts and concerns about insomnia. It was pointed out that the significance of worrying about sleep (or lack of!) is part of the problem and makes the whole thing a damn sight worse.

For example, when I explained “I’ve always needed a lot of sleep. If I don’t get at least 8 hours, I just don’t function” I was invited to question this belief. I had to confess it was possible that the amount of sleep we need might vary from time to time, and that there have been lots of days when I’ve surprised myself and managed to get by successfully in spite of a bad night’s sleep. Acceptance is also key (and very yogic!). I learned not to allow myself to spiral into negativity on those occasions I can’t sleep, instead I think “OK, I’m not sleeping right now so I’ll get up and make myself a chamomile tea and enjoy some time for myself. Maybe I’ll do some yoga relaxation”. Another helpful thought I now have is “as I’m a restless tonight that usually means I’ll get an extra good night tomorrow night- excellent”.

I also used to avoid daytime napping in the false belief that by not sleeping in the day I’d sleep better that night. I have now learnt it doesn’t work that way. Sleep is like money in the bank: you should add credit whenever possible so there are extra supplies for ‘rainy days’. So now if the opportunity for an afternoon nap arises I try and take it without guilt or concern.

After all, as the comedian Carrie Snow pointed out “No day is so bad it can't be fixed with a nap!”

Wishing you all a 'bon nuit' x

The boy that cried wolf

2009-10-05T06:33:00.000-07:00

Having recovered from a cold I picked up, the lupus has done its usual and put in a bit of an appearance: a new rash on my back, ‘hurty’ patches on my feet and the base of my neck, some stiffness and aches in my hands, as well as the revival of the usual mouth ulcers and fatigue and perhaps most worryingly for me, the odd headache. I have also developed a kind of burning stomach sensation that I suspect is just a pregnancy-heartburn-reflux-thing but I am concerned to confirm this as my steroid dose has increased and this has caused problems with stomach ulcers in the past.

I have taken sensible lifestyle precautions such as cancelling appointments and getting plenty of rest but symptoms weren’t showing signs of improvement so last night Tony (my hubby) and I were debating what course of action I should take: should I contact the lupus consultant?, the specialist obstetrician?, the midwife team? or, (my suggestion) “leave it a bit longer and see how it goes until next Monday when I have a my next fixed appointment - after all, things might 'just get better'?”

The last suggestion didn’t go down well with Tony, who pointed out that "the ‘leaving it to see if it sort itself out strategy’ has often proved disastrous for us in the past where, far from getting better, symptoms have spiraled out of control and required dramatic treatment that might never have been necessary if we’d just ‘nipped it in the bud’ in the first place!"

In my defense I reverted to the words have popped out all too often in recent years “I just don’t want to bother them unnecessarily … I just don’t want to be like the ‘boy who cried wolf’”

Even just after I said it I knew it was very un-Living Well with Lupus

Drawing on the lupus / wolf connection Tony retaliated “But you are not making it up! It’s not like you are a bored shepherd boy with nothing better to do (!), ‘the wolf’ actually has confronted you (and does so a lot of the time) so you are justified in asking for help whenever it appears”. And of course, he was absolutely right.

At the end of the 'Boy that Cries Wolf' fable Aesop spells out the moral. I guess the moral of this story is that lupus is a REAL wolf and there is absolutely no shame in asking for help ... in fact it is the wisest thing to do.

Right. I'm just off to make that phone call now and if needs be, I urge you to too.

Is it lupus who is the master of disguise, or is it me?

2009-09-28T02:32:00.000-07:00

On recent occasions I have met up with friends I haven’t seen in a while and certain questions and remarks they made showed that they clearly don’t have a clue about how much lupus plays a part in our lives these days and the impact it has had on us. For example, it was flippantly implied that my having largely given up most my paid work for the time being was some kind of indulgence (something I’d like to go into in more detail in a later post). Although I was momentarily irritated as they’d hit a very raw nerve, I quickly realized that any insensitivity was entirely unintentional and most importantly, that I was at least in part to blame for their misunderstanding.

When I thought about it I realised that although friends and family have been told of bouts of illness, periods of hospitalization and we’ve been open and honest about the complications all this has brought to our lives, it really just amounts to ‘hearsay’ as only very few have witnessed evidence of it for themselves. In fact on the whole most of them have only seen me looking and acting well. When I meet face-to-face with others I find myself always doing my best to present myself as positively as possible both in temperament and appearance. Even when the lupus is trying to deny me and energy is running low I often find I just ‘dig deep’ and carry on regardless. So it’s really no wonder people have the wrong impression.

This led me to question whether it is just a façade and to ask, am I somehow being dishonest and just putting on a show for the outside world? Could it be that I have been using a ‘disguise’ of wellness and positivity to fool others and hide from the reality, in a similar way to which the lupus itself disguises itself as other illnesses to conceal its’ real identity?

After much thought I am glad to say I don’t think this is the case. I realised that it’s not that I’m being false or deceitful, quite the reverse: it is just part of me to be sociable and friendly. As those the closest to me would vouch, by nature I am generally a relatively cheery person who, within the boundaries of realism and honesty adopts a positive outlook. It is the way I find my way through life. Tony my husband is very much the same. So during times that I am ‘out and about’ talking to others and being part of the world what they see is not the lupus but just me being me and being so is interpreted as ‘healthy’ by others. Equally, perfectly healthy people who are negative and unengaged can seem unhealthy. So I suppose it is unsurprising that others can easily fail to appreciate some of the ongoing challenges and wretchedness that the lupus bring to life when it so chooses (and on a more frequent basis than many imagine) as these things are not visible.

As being the way I am requires a good level of energy, I have often surprised myself how I have managed to carry on ‘being me’ without it being obvious to others. Even when I am in hospital I manage to chat and befriend the nurses and cleaners I meet and I am sure they wonder what on earth I am doing there. I have even driven myself through high profile presentations for work which I’ve done successfully without anyone suspecting anything untoward only to find myself shortly after.

It is only in the very worst times that this ability to ‘shine on’ regardless has been affected. For me those rare occasions where I felt lupus had robed me of my personality were the most desperate and frightening. Only my very nearest and dearest have witnessed this as I retreat from the world.

So on reflection in some ways I am glad that others don’t get it. I want to be me and I am glad that I still can, even with the omnipresence of the lupus and all its many faces.

Avoiding appointment disappointment

2009-09-09T10:42:00.000-07:00

I feel like dancing on the rooftop and shrieking with joy because something so strange and marvellous has happened. I have noticed that recently I have consistently started leaving medical appointments with a feeling of satisfaction

Yes, these days when I leave the consultation room after appointments with either my consultants or my GP I feel I have been heard, believed and given the best professional help available. Now, whilst I understand that your average person may not feel this is worthy of such a reaction of delight, because one might reasonably assume that this would not be too much to expect from a medical appointment, for many a ‘loopy’ this is often not the case.

Thinking back I literally get a shiver down my spine when I remember certain medical consultations. Other memories simply enrage me. There were numerous problems: feeling rushed, feeling that the doctor was distracted (one GP even took a personal call on her mobile in the middle of my consultation, so I sat there trying to come to terms with my new chemotherapy drug regime I was on, while she merrily planned her social arrangements for that evening with a friend!) or otherwise feeling the medical professional I was consulting was clueless about my condition. Feelings of intense frustration were also commonplace, especially when I was for a time undiagnosed after being diagnosed, only to be finally and satisfactorily diagnosed once again. But the worst thing of all I felt during these inadequate consultations was disbelieved.

When have enormous respect for someone because of their professional capacity, if they appear to doubt you, it is easy to doubt yourself. There were times when I started to believe that maybe I was just a hypochondriac as the attitude of certain doctors seemed to imply; maybe I was just imagining the headache and making a fuss about the other symptoms. It is odd to feel grateful for a seizure or for finding oneself unconscious in Intensive Care, but in some ways it did me a favour – it vindicated me, it got doctors to take me seriously and it confirmed once and for all I was no joker.

Having given the matter much thought, I have realised that there are a number of barriers which give rise to unsuccessful medical consultations and that blame lays at both the doctor and the patients’ door. I believe there are very few doctors who are truly ‘bad apples’, but there are a some whose bedside manner leaves much to be desired and rather more than there should be whose knowledge of lupus if very limited. This doesn’t have to be a problem unless they are one of a significant number that is dangerously constrained by professional ego. An otherwise decent doctor who is not fully au fait with the condition but who is open to learning is one thing, but one who is ignorant and arrogant is quite another; they can be very patronising and even dangerous. I have come across them all over the years.

Still, I recognise that patients can also make matters worse for themselves. Unless we allow ourselves to accept in our hearts that lupus is unpredictable, difficult to read and currently incurable we can go into our appointments expecting our doctors to be magicians who ‘wave their magic wands’ and instantly prescribe us the answer to all our problems. Sadly, the truth of the matter is there is no ‘one size fits all’ when it comes to treating lupus and doctors have to be given a bit of leeway. When I found a consultant that I felt respected me and was constantly endeavouring to try and help me find a way forward, I accepted a lot of what we had to do together medicine-wise was trial and error. Nothing he could do or prescribe was going to be perfect and provide a complete cure without side-effects, but with much ‘tweaking’ here and there, we were going to find the best possible solution.

This requires good communication which is another thing vital to getting a positive outcome from meetings with your doc. There have been times when I have had so much invested in a particular medical appointment, been so emotional and felt so much of my life rested on it that I have gone in and (quite uncharacteristically) found myself nervous, freezing up, forgetting to mention some of my key symptoms and to ask all my questions. I essentially turned into a passive, simpering ‘yes’ puppet! Realistically, when I was like this, how could any doctor be expected to deliver what I wanted and needed?

So what can we do to avoid these hellish experiences and start getting the best from our contact with the medical professionals? I have turned some of the things that I feel have helped me into the following list of tips

Have all the relevant information about YOUR medical history to hand to help enlighten doctors you are meeting for the first time and to validate what you are telling them (recently, in an appointment of mine, a copy of recent blood tests, an old MRI scan and a letter from another consultant proved very handy)

If you are going to a medical professional whose specialism is not necessarily lupus (e.g. A&E department, a GP) it can be handy to have some general information on the condition
However infuriated you feel ... never get angry. This is guaranteed to piss-off the doctor, who will instantly write you off as ‘neurotic’!

Be persistent

If it’s not working, CHANGE doctor or ask to see someone else. A lot of people don’t seem to think this is an option, but it is and you can. It may mean a bit of compromise like travelling a bit further, but believe me it’s worth it. After suffering a GP-practice-from-hell I switched to a GP-practice-from-heaven and haven’t looked back. Why I didn’t do it sooner amazes me ...

If you find a consultant / GP you like and feel you can trust, stick to them like glue – they are worth their weight in gold
When you are too ill or emotional to fend for yourself or just not up to explaining, take someone with you as your ‘spokesperson’. In some of my darkest hours the formidable combined force of my Mum and Tony was enough for any doctor to reckon with ... but they got the results

Show you are prepared to be reasonable and build a good rapport

Let’s not pretend that all this is easy. It has taken me many years and much work and support from my husband and family to get to a point that I’m happy with my medical care, but it is worth it. After all, getting the best from your doctors and consultants is vital to living well with lupus.

What's been going on?!!

2009-09-05T10:11:00.000-07:00

After a long, unexplained absence I am back. Let me explain the reasons for my online disappearance...

Firstly, the mundane and practical reason I have not been able to visit my blog is that I have been without a computer for six weeks. A long story I won't bore you, which involved the breakdown of our laptop and investigations that revealed that it would be more expensive to repair than to replace blah, blah, blah. The long-and-the-short of it is that we finally have a new laptop up and running, although none of the data from our old one (we are working on this). It has been a nightmare as I've only been able to pick up emails sporadically and not able to visit livingwellwithlupus.org at all. Strangely, it felt like I'd lost one of my senses. Now I've finally had the chance to get back online, I have discovered a number of new messages and introductions from some fellow loopies out there who have stumbled across the site. Thank you so much. I often feel I am writing into the abyss so it is really motivating to have your support and to find that what I am writing means something to someone; to be reminded that I am not the only one trying to navigate the unpredictable minefield that is lupus. Now I am happily installed back in my little office which has stood empty for so long, I will be responding to each and every message so I hope you haven't given up and will be back to see.

Meanwhile life during this period has been far from uneventful. I discovered, mainly unexpectedly that I am pregnant - now 16 weeks (I told you the holiday in Italy was good) !!!!!!??????????!!!!!!!

Tony and I had planned to start a family after we got married in 2006, but thanks to lupus it was not to be. My doctors knew this was our wish, but until recently the medications controlling my symptoms meant that it was out of the question. Over the last six months they helped me juggle my medicines to find a way to make the prospect feasible (mainly by switching from MMF to Azathioprine and getting the steroids down as low as possible) which wasn't without its problems, but eventually worked. We'd all but convinced ourselves that after everything we'd been through over the last four years in particular, conception probably wasn't going to be straight forward but nature took its course far quicker and more easily than we'd expected, so we both went into shocked disbelief when the pregnancy test indicated positive. After four tests and confirmation from the GP we started to believe it may be true, but were scared of running away with the sheer wonderfulness of the possibility, because we knew matters relating to my health are rarely straight-forward. Sure enough week six into pregnancy the lupus decided to flare. Apparently this happens to approximately 30% of SLE patients, although I understand for many pregnancy also temporarily ‘cures’ symptoms. Things have been controlled and settled to some extent by an increase in steroids and generally I have been doing well. Fortunately, I do not suffer with certain key things that are known to complicate lupus pregnancies, such as sticky blood and so far I’ve been fortunate enough not to have had any kidney involvement. Anyway, regardless of how I am when we got to see the baby at the 12 week scan it certainly looked full of beans!

Managing pregnancy let alone new born babies when you have lupus is a whole new territory for me and is not something that our research explored (let’s be honest the fact that no respondents who were pregnant or with young babies volunteered to take part probably speaks volumes in itself!) so I guess learnings on this topic will be working progress. I have now stopped working entirely for the time being so have more time to dedicate to livingwellwithlups.org and plan more regular postings. So for now it’s a case of ‘so far, so good’, and we are touching an awful lot of wood and keeping fingers and toes crossed at all times.

Taking the ‘ow!’ out of mouth ulcers

2009-07-17T03:15:00.000-07:00

Mouth ulcers are a common symptom of lupus and one that for something so small can cause a great deal of misery

The mouth ulcers I get range from painful white spots on my inner lips and gums to large white patches covering the palate of my mouth (as in the picture) or inner cheeks of my mouth. I have tried various products on the market as well as some prescribed, so here are my top tips:

1. I find gel products slide around and don’t stick to the ulcer so opt for liquids, sprays and pellets that stay in place

2. Products I find helpful are:

Ambesol Liquid is an old favourite of mine as it numbs the pain entirely and allows you to eat and talk without pain. The drawback is that it really stings when you apply it, so prepare yourself!

I find Corsodyl Mint Mouthwash helps when it is impossible to brush my teeth properly as it maintains oral hygiene and prevents infection and gum disease, as well as easing some of the soreness. I have also just discovered Corsodyl Spray which is great for zapping ulcers that are lurking in hard to reach corners of the mouth

3. Certain foods should be avoided as the pain is eye-watering – lemons and tomatoes spring mind

4. Although they are a pain to use, when things have been really bad prescribed topical steroids have worked for me

5. Desperate times call for desperate measures: sometimes drinking through a straw, lukewarm soup, ice-cream, yogurt and jelly and avoiding hot drinks can be your only option

If anyone else has any good ideas, I am always on the lookout so let me know.

Troubled Waters

2009-07-15T03:45:00.000-07:00

Well it was bound to happen, it is sod’s law. After all this talk of keeping on top of things and having had a very good run, the lupus has paid another notable visit. Mouth ulcers, a rash on my hands and a patchy crimson upper-lip rash (ironically rather like the one I mentioned in my previous entry!), are all some of the visible manifestations of this flare, some of which can be seen in the accompanying picture.

But, like usual, it’s the things that can’t be seen that are really bothering me. Symptom-wise it’s the fuzzy head, aches and pains and the sense of being distant from the real world, and an insatiable fatigue that any amount of sleep or rest can’t touch.

But even worse than these are the emotions and worries that accompany this kind of flare, the kind that mainly gnaw away in the depths of the night: all the ‘what if’s’ and the ‘flashback’ memories of scary lupus scenes gone by, and the disturbing imagined forthcoming outcome scenarios and the feelings of ‘not again’ and ‘why now?’. And then there is the lupus loneliness; the loneliness of not wanting to bother or worry your loved ones again, and knowing that it is impossible for most of those around you to fully ‘get’ how it feels. There is also the feeling that without ever questioning the steadfastness and depth of his absolute love, my husband in spite of himself, likes me less when I’m in the depths of a flare and I don’t blame him, it’s no wonder, because I like me less. When I’m like this I am a nightmare to live with. I am low, snappy and sad and totally preoccupied with being ill – not exactly a bundle of laughs.

Don’t get me wrong. I have sufficiently good self esteem to recognise that all the inner negativity described above is just ‘flare talk’. A deeper and far wiser part of me knows that that this depressive (and probably not entirely accurate) outlook is a symptom of the illness. Moments of weakness and fear are what make us human. Nonetheless, I believe is important to acknowledge and accept such thoughts and feelings ... and then just let them go. This is core to yoga philosophy, something that studying has helped me enormously. Now morning has arrived, the darkness has passed, although the physical symptoms remain, my attitude has changed and inevitably a clearer, more realistic perspective has come. Phew!

So what can we learn from this? The key to being the master of lupus is to be the master of your mind.

The Cool Way to Staying Hot

2009-07-02T09:03:00.000-07:00

In the heat it can be hard being a loopy. This year I found a better way of being...

As I said before, my efforts in the past to protect myself from the sun have been somewhat half-hearted. I realise this was probably due to a vain desire to turn from a ‘pasty Londoner’ into a lovely ‘honey-brown babe’ (well you can but dream!) and a misguided belief that the sun didn’t affect my lupus much.

I guess some things you have to learn for yourself - the hard way. Looking back, the reality of too much sun exposure for me has not only been a complete disaster in terms of my vanity (!), but also detrimental to my health. A deep crimson ‘moustache’ rash (visible in one of my pictures) that lasted in excess of six months after the holiday in question (that only disappeared when I was given very serious treatment in hospital when my general condition had become dangerous – potentially all caused by the same holiday), a long lasting brown blotch on my forehead that looked like an expansive country sprawling across a globe, itchy rashes on my body and a gelatinous lump on my eyeball – enough to make you squirm - are all some of the delightfully visible physical signs I have had when I’ve had to too much sun. Not exactly the ‘beach babe’ look then! Other non-visible symptoms include headaches and lupus fatigue.

The entertaining picture at the top is an example of just how unglamorous my attempts to catch a few rays ultimately became. On a holiday in Sardina a few years ago, after too much sun, no hat and no sun umbrella, on a beach with no shade and with a terrible headache Tony ended up lending me his t-shirt, wrapping me in a sarong and using an umbrella to shade my head. As you will, see I ended up more like a beach tramp than a beach babe!

I was therefore rather pleased with the more effective way I managed the sun this year. Firstly, we consciously decided to book our summer holiday (to Umbria in Italy) in late spring to avoid the truly scorching weather – although I have to say it was still hotter than we were expecting. Like most women I still hoped to look nice while I was there and even better when I got back. To address this I did a few things that worked very well.

1. As I often feel a bit ridiculous and decidedly un-‘continental’ under functional oversized hats and sunglasses, this year I put a bit of effort into developing a more stylish hat / sunglasses combo– so while I was protected from the sun I also felt stylish (or at least not like a complete idiot!)

2. AND most importantly I developed a routine that meant I still managed to return from holiday with a nice sun-kissed look! I achieved this by following every morning application of high-factor sun cream with a layer of fake tan. Just as a natural tan does, the fake tan seemed to build up over the time we were away. Although I admit it did require a fair bit of effort, it didn’t seem to matter because we were on holiday and so I had more time and inclination. It meant I returned with a holiday glow that looked as if I’d done hours of dedicated sunbathing without having to go to all the effort (and if the truth be known I’d far rather be snoozing in the shade or reading a good novel or magazine anyway – after all, the sun is so uncomfortable)

3. Another useful thing I did was to take siestas during the day at the same time as the locals to avoid the hottest part of the day and I found beautiful trees to sit under, so I could still enjoy being in the sun without the problems.

I’ve come to rely on a few reliable products that I’ll recommend in case you want to give them a go:
1. Clinique Super City Sunblock SPF 40 – a permanent fixture in my handbag
2. Soltan Mini Spray SPF 50 – I find this great because it’s small enough to carry around and because it’s a spray you can put it on ‘hard-to-reach’ places for yourself (from Boots)
3. A lip balm with sun block – I admit I forgot my lips this year and burnt them (I learnt not to forget eyelids last year, behind the ears the year before!), so have started using Elizabeth Arden’s Eight Hour Cream Lip Protectant Stick SPF 15 that my Mum bought for me which seems pretty good
4. Sunglasses with UK protection (to protect your eyes and avoid the ‘gelatinous’ eye thing)
5. Hats, hats and hats and caps – to go with any outfit – ‘Accessorizes’ has a good selection

Please let me know if there is anything else I should be onto or doing...

(By the way, if your lupus is flaring I’d recommend staying out of the sun entirely if at all possible and keeping yourself as cool as you can. From my experience, even just the heat makes you feel more unwell than ever and I know other loopies have said the same)

Happy Days

2009-06-24T07:25:00.000-07:00

It’s been a while, so I thought it was about time I put ‘finger to keyboard’ (a modern twist on ‘pen to paper’). So, what’s been keeping me?

Well it’s been a case of ‘no news is good news’. For the past few months I have been enjoying life in a way that for a long time I thought would never be possible again and so far, I’ve avoided having to pay too higher price health-wise. I’ve been on a fantastic holiday to Italy, progressing with my Yoga Foundation 1 course (that I’ll finish with final retreat in July), thoroughly enjoying Ben and Rachel’s wedding, coordinating building work on our house, keeping up with my voluntary support work and spending great time with Tony. So what’s happened? How has this been possible?

I have talked of lifestyle changes before, but I know it’s not often possible to change everything overnight. I started making small changes long ago when I realised that lupus couldn’t be a) ignored, b) fought or c) ‘willed’ away. With each thing I tried I hoped it would be the key to returning to a healthy life. Individually each thing helped, but I’d still hit upon significant stumbling blocks. And realistically I probably still will because it’s very easy to fall back into a ‘phew, I’m over that now’ mentality as soon as I feel vaguely better, although I know in my heart of hearts (as we all do) that currently lupus cannot be cured, it is always there. But, with proper management it can be contained.

This is the reason for the recent spate of relative good health (ok not perfect but pretty damn good) and consequential happiness I have been enjoying. At the beginning of this year I made a pact with my husband to consciously adhere to all the winning lupus lifestyle lessons we have learnt over the past few years. The incentive is high. We would really like to start a family and the doctors have been working to adapt my medications to make this feasible. Meanwhile it is my job to do all I can to ‘tame’ the lupus, as going into pregnancy mid-flare isn’t likely to make for a happy story (and let’s be honest, when lupus is flaring even the conception part itself doesn’t hold much appeal!). So I’ve been acting on all the things that I know, rather than just knowing them, if you see what I mean. And it seems to have been working.

For example, I have been taking sun protection very seriously this year (unlike in the past where efforts have been half-hearted and underpinned by the desire for a nice tan and the mindset ‘I’m sure it doesn’t affect my lupus that much’) and low and behold, I have avoided the usual downer that follows a holiday. Notably I still had one of my most enjoyable holidays ever and came back looking really healthy. There is a separate blog on this subject to follow as I’ve discovered new products and tips.

Due to the economic recession my work was drying up so I decided to turn this into an opportunity to make more time for my health and reduce stress. I would now describe myself as ‘semi-retired’ – at least for the time being anyway. I do some low stress work for my husband’s business and occasional odds and sods for former colleagues, but nothing that puts me under any great pressure.

I’ve been getting rest and sleep where necessary even during the day; what’s more this is without guilt (a new one for me). I’ve also been keeping up with my yoga and trying to walk regularly for gentle exercise as well as to sticking to prescribed medical routine, blood tests and appointments.

Ok, I’m not pretending I’ve been the perfect angel 100% of the time, but having a strong incentive has made sticking on the lupus ‘straight and narrow’ far easier.

To summarise the key factors that have been key to my good stretch, in case you fancy making a few changes that are likely to help:

A strong incentive to stick to lupus lifestyle ‘rules’
Minimised stress
Rest & proper sleep
Sun protection
Yoga and gentle exercise
Disciplined medical routine

With a bit of help from my friends

2009-04-22T08:54:00.000-07:00

Relationships of any sort can be difficult at the best of times, but factor in lupus and you open up a minefield.

Our research and my own personal experience illustrates that with an illness that is as misunderstood and unpredictable as lupus, combined with the fact it is often invisible, other people find it difficult to understand. And, as a chronic disease that is around to some extent on an ongoing basis, it is unsurprising (although unfair) that sympathy runs low at times. This is not helped by the fact that unless we are practically on ‘death’s door’ many loopies are not always entirely honest about how we are feeling as we don’t wish to come over as permanent whingers – after all, who likes a misery guts?

The subject of how to manage well in this department is vast and daunting to approach, which is why I have thus far avoided tackling it. However, it’s something I’ve talked to others about a lot and have been observing closely in my own life. The good news is relationships of any kind can work if due effort and thought is put into them and they are underpinned by good communication, as well as a generous measure of ‘give and take’.

Take this weekend gone by as a good example of how understanding friends make a loopy's life far better lived. Some of our closest friends are getting married at the end of May and this was the weekend of their respective ‘stag’ and ‘hen’ celebrations. I certainly didn’t want to miss out especially as the boys were on a four-day bender in Spain, but knew the planned level of partying was intense even for the entirely fit and healthy, let alone for someone treading the lupus tightrope like me! However, Rachel (the bride-to-be) made it possible for me to go along and thoroughly enjoy the whole weekend. For example, she made it clear that I was welcome to come to as much or little of the weekend's festivities as I felt up to and that she wasn't going to turn into 'bride-ziila' (!) if I couldn't be there, so I felt under no pressure. As I was feeling ok, I rested up and decided I was most definitely up for it. Due to the fact there were so many of us staying in Rachel's flat for the weekend, we made a ‘hen’s dormitory’ in the living room. However, Rachel made sure I had a room of my own to retreat to for peace and quiet and extra rest at anytime – a real privilege as space was limited. This was an ideal gesture that was made subtly without fuss so I didn't feel like too much of an oddity and lengthy explanations to other hens that I didn't know previously weren't necessary. Just by knowing I had somewhere to retreat to if I needed was a great relief. In the event, I partyed well and so far haven't had to pay too high a price. Thanks Rach!

In a way when it comes to the people around us, lupus can help us sort the ‘wheat from the chaff’. There is no such thing as ‘fair weather’ friends when you have lupus. Importantly, it is the strong bonds that I have with my hubby, family, friends, colleagues and even my doctors these days (!); the very relationships that have survived the ‘lupus test’ that help me get by. The picture above, taken at Rachel’s hen illustrates this perfectly.

The four 'P' approach

2009-03-25T00:46:00.000-07:00

I have been having a bit of an 'amber' time recently and am trying to work my way through some more health difficulties and medical conundrums associated with the old lupus. This is not helped by the fact things are busy right now, not least because we are planning a surprise party for my Granny's 90th birthday which is great fun, but involves a fair bit of work.

I was therefore really pleased to hit upon a very insightful tip when I was resting yesterday, given in Lupus Now by another 'loopie' in America, called Ann Utterback. It struck me as a very succinct way of expressing the key to Living Well with Lupus. It gave me the focus I needed to get back on track mentally during a moment when I was feeling rather despondent so here it is in case it is also of help to anyone reading this:

Practice the four P's:

1. Plan

2. Prioritise

3. Pace yourself

4. have Patience

I think this is excellent advice because it is simple and clear yet it captures everything that is key to working around the lupus.

Incidentally, I recommend Lupus Now in general. It is the magazine produced for loopies and their families by the Lupus Foundation of America. It was recommended to me by one of the loopies that took part in our research (thanks Dierdre!) and I now subscribe, although you can now access it online too: http://www.lupusnow.org/ I find the articles are relevant and offer lots of useful information and advice.

Anyway, I am off now to dot a few 'Four P' post-it notes around the house to remind me to plan, prioritise, pace myself and be patient, so I won't go wrong.

Getting ‘over the moon’ and weight gain factor

2009-03-22T06:14:00.000-07:00

I’ve always had a healthy appetite but when my steroid doses increase I turn into nothing less than a mean eating machine. I am only 5 foot 2 and I often feel I could eat my husband under the table (not literally!): he is over 6 foot and a big lad. Personally, I find it is not exactly hunger though; oddly it’s just more a constant urge to eat. Weight gain is common amongst those taking Prednisone (especially with doses over 10mg) and as I’ve highlighted this includes a fair few ‘loopies’. The reason for the weight gain is that Prednisone causes the body to retain sodium and lose potassium. This combination can result in fluid retention, weight gain, and bloating. Furthermore, an increased appetite is another significant side effect for many.

And, as if ‘unfair’ weight gain (as I see it in these circumstances!) isn’t bad enough in itself, Prednisolone often causes the redistribution of fat, which makes any amount weight gain even less tolerable. The weight gain from Prednisolone tends to be located in the face (‘moonface’), back of the neck (‘buffalo hump’), and the abdomen (‘truncal obesity’). Aren’t these very words alone enough to make you cry!? To give an idea I have showed a ‘before’ (left) and ‘after’ shot (right) to demonstrate a bit of my moonface, but to be honest, I was reluctant to have too many photos taken when things were at their worst!

I continue to struggle, but have so far been relatively successful at keeping my weight down, although there are times when things have been worse than others in this department. Still, here follows the best advice I can give that has so far helped me.

Firstly, Coldplay have it right when they croon “♪♪ nobody said that it was easy ♪”. It’s not. I guess this applies to many things in life, but certainly when it comes to trying to keep a waistline when you’re on steroids. So really that is the first lesson. If you want to keep your weight down, it is something that you have to permanently be aware of and act accordingly to avoid it.

Then there is the obvious stuff: exercise and healthy diet. Obviously don’t go on a diet. They never work, at least not long term. Just make your personal diet a healthy diet. I don’t really need to spell it out as you’ll have heard it a hundred times before, but just in case I’m talking about basing it on, fruit, veg, beans, fish, rice, noodles, pasta, lean meat, tofu and lots of wholemeal stuff. Of course the odd blow-out and occasional treat here and there is a definite must, but rarity only heightens the enjoyment.

And then there is my mantra: breakfast, breakfast, breakfast and especially anything with oats. I’ve said it before; I’ve just said it again. I won’t bore you any more with this
No one wants a boring diet and I reckon the key to eating healthily but exceedingly tastily is to ‘chop till you drop’. Odd as it first sounds, if you learn to enjoy chopping it helps enormously, because once it is done you can make delicious food that is not only tasty, but not too bad for the waistline. Then if you find you need to eat a mountain, it doesn’t have quite such visible consequences. The chopping bit used to be what put me off cooking proper food and turn to quicker less healthy options. Weirdly enough, I’ve crossed the pain barrier and now I actually find it relaxing. If I sit and chop herbs, peel and slice veggies and fruit, grate lemon zest, ginger and nutmeg, mix bowls of homemade treats to the doldrums of my favourite music or radio shows I find a kind of inner ‘chi’ (one of the first pieces of key advice at the beginning of this whole Living Well with Lupus thing that you need to find your inner-hippy!)

Someone in our research told us that if you have problems with arthritic hands (something I am grateful to have recovered from now but I had it for a while) there are implements to help with cooking and chopping that are worth investing in. For example, I like the look of this stylish ‘easy grip’ utensils set:

http://www.allegromedical.com/daily-living-aids-c519/easi-grip-magnetic-rack-p500930.html

My food processer also has attachments that are for slicing and grating.

I find if you a chop and peel a lot of the things you often use in one sitting and put them in the fridge or freezer, it means is easier to make something tasty and healthy on ‘amber’ days, likewise with meals that you make too much of. If you make a whopping fruit salad with only your favourite fruits (illuminate the boring stuff) and leave it in the fridge it is great to have to dip into throughout the week.
Try to keep only healthy snacks in your cupboard and on your person so when hunger strikes you can only but satisfy it wisely
And here is my personal secret tip: when you get steroid munchies and you can’t help but eat in between meals, eat anything (healthy) that crunches: carrots, apples, celery, popcorn, rice cakes, radishes, sugar snaps, whatever - so long as it’s crunchy. This is just a personal discovery and I cannot claim it is backed by any scientific evidence but it certainly worked well for me in that I didn’t pile on too much extra weight. I reckon it might be because crunchy foods take more effort to chew, so whilst they satiate the compulsion to eat, a certain degree of energy is expended in the process itself simultaneously burning calories and giving the facial muscles a good workout – great for the old ‘moon-face’.

Anyone tries the crunching method I’d be really interested to know how it works for you. Also, any more ‘hints and tips’ you can post would be most welcome by me and others I am sure.

Prednisolone the friend and foe

2009-03-20T07:00:00.000-07:00

Many a ‘loopie’ has to take Prednisolone at least at some point and often long-term, to control their symptoms - me included. If you don't take it now there is a strong likelihood it may be necessary at some point.

But Prenisolone introduces yet another lupus paradox: the very drug that saves your life (and let’s face it, regardless of what you feel about it, it does seem to help keep things in check) simultaneously messes you up in one way or another. The only way to describe my own feeling towards it is most definitely as a ‘love / hate relationship’ and I have found this is true for others too.

The alarming potential long term side-effects such as osteoporosis, diabetes or stomach ulcers are one thing, but the future is unknown and we can but hope for the best. Nonetheless, we are still able to take the best measures we can to help avoid such outcomes, such as taking calcium supplements, eating a healthy diet and taking medication to protect the stomach lining.

But it seems the more immediate and pesky symptoms that plague us in our daily lives are the ones that really bother us and give us a sense of righteous indignation. I’m talking insomnia, acne and weight gain for example, not to mention other common nasties like depression and / or ‘mania’. I can’t help but feel any of these is like adding insult to injury!

Still like it and/or loath it, until our dream ‘wonder cure’ is invented (and I am optimistic that one day it will) many of us have not much choice but to live with our ‘friend and foe’ Prednisolone if we want to keep the lupus symptoms under control. All we can do is approach it in a pragmatic way.

I suppose it goes without saying, first and foremost any side-effects should be discussed with your doctor, then take on board their advice. Beyond this, in order to reap the benefits of prednisolone, you have to seek out ways to cope with the side-effects and manage them as best as possible. My success in achieving this has varied depending on the particular side-effect in question. For example, each time I think I’ve cracked insomnia (the kind where after going into a deep sleep you wake up at an unearthly hour say 4.00am, as if you have an inner alarm clock programmed, only to finally drop off again 5 minutes before the real alarm goes off) for it to come back and start plaguing me all over again, so I am still working on that one. With others I’ve had more success. So it is my intention to do a post looking at each side-effect individually and considering how best to tackle it. I am going to kick-off with avoiding weight gain as this is the one that seems to affect most people to some extent and certainly gives rise to the greatest upset. Watch this space.

Stop to Go

2009-03-02T05:09:00.000-08:00

I need to get this down in black and white (or more accurately green and white in this instance), so it’s ‘out there’ for everyone to see and to ignore it would be entirely hypocritical on my part. To 'practice what you preach' is after all, only right.

The funny thing is that in my heart of hearts I know that this lesson, if learnt properly, is one of the most fundamental ways to ensure you can optimise life and get on in spite of lupus. I’ve been told it by others: doctors and loopies alike, and even learnt it the seriously hard way for myself and I think I may have already written abou it on this blog before, but I just seem to lose sight of it every so often and bugger it up (last Friday for instance). I wonder, does anyone else have this problem?

Anyway, I include it now as a permanent ongoing reminder to myself. As with so many things appertaining to lupus, there is a definite element of paradox at its heart but remember this, and you will thrive much better:

When lupus hints that it is about to put in an appearance, the best thing to do is nothing. In other words the best action is non-action. That is stop and rest; physically, mentally and emotionally. Cancel what you had planned. You’ll be surprised (as I invariably am) that in spite of what you might believe, in reality there is actually very little that really just cannot wait. If on the other hand, you choose to ignore it, it will just get worse and suddenly everything has to wait, like it or not. This can be much more long term. Listen to your body and never try to push on regardless. Ironically, the less you do now, the more you will be doing in due course.

Some highly important little sub-points to be remembered:

Although it might not be planned or especially convenient, relaxation is always a wonderful thing so be flexible, and remind yourself to just enjoy it and then you are still living well
Good old Richard Carson reminds us we should “let go of the idea that gentle, relaxed people can’t be super achievers” - oh yes we can!
Gently does it. Once the rest has done the trick and you have restored some of your ‘va-va-voom’, resist the temptation to go crazy otherwise you’ll find yourself trapped in a vicious circle

What wise words. Now all I have to do is just make sure I take heed ...

Butterfly Walk

2009-02-23T10:21:00.000-08:00

The 10th May is World Lupus Day when organisations from across the world unite to try and increase public awareness.

The truth is, if other people - from employers and politicians to friends, colleagues, and acquaintances, people on the bus, doctors and nurses and let's not forget 'Bob your Uncle' and 'Fanny your Aunt' - had even just a tiny bit more of a clue what lupus is and how it can affect people, things would be so much easier for 'loopies' far and wide. It may also be diagnosed more effectively. So all in all, it is my belief that promoting awareness can only be a great thing.

Sadly, World Lupus Day is not top of every one's priorities, and unfortunately this it year coincides with an important date on my Yoga Foundation Course, so I am unable to attend.

So, this is a little plea calling on anyone reading this to help the St Thomas' Lupus Trust by joining them for the 5k walk (or run if you are so inclined). For details:

http://www.lupus.org.uk/news/news_wld.htm

The best bit is that you get to dress as a butterfly! This would be the highlight for me because I reckon the 'butterfly look' has a LOT of potential ... the picture at the top illustrates the sassy butterfly look I would most definitely be sporting if I were there ... who could argue with those metallic leggings!?

Thanks to anyone who does this.

Shabba Remedy

2009-02-20T10:34:00.000-08:00

If I’m honest, I found the idea of ‘pet therapy’ rather creepy because for some inexplicable reason it made me think of the well meaning, but slightly malodorous and decidedly odd ‘cat ladies’ who used to live up my street when I was a kid, who shared their home with upward of 10 local stray cats. I say no more!

So it was with pleasant surprise that pets (dogs in particular) were mentioned in our research by more than one very normal and lovely seeming ‘loopy’, as being hugely helpful in making things better for them. Whilst I acknowledged this anecdotally and it was highlighted in our report, I have to confess it was not something that I gave any serious consideration to in relation to myself.

Whilst I love dogs and grew up with them as a permanent and much loved part of my childhood, Tony and I decided that we wouldn’t want one of our own before we had children. This is because we both see a dog as an integral part of childhood, so in our minds, dogs and kids kind of come together. Like children, pets come with their ‘drawbacks’; not least mess, fur, expense and responsibility. And let’s be honest, they impede on the much valued freedom of a pre-kids couple. So we have always had the attitude, let’s wait for kids to be on the agenda before we get a pet: a kind of ‘in for a penny, in for a pound’ mentality.

It was therefore mainly out of love for my parents that I agreed to house and care for Shabba, my mum’s precious Labrador, while she and Dad were away on holiday. Now, don’t get me wrong, I love Shabba but he has always been a dog with significant ‘issues’ and not a pet for the faint hearted! If you have read Marley and Me by John Grogan you will get the idea (if you haven’t, you should!), although thankfully he has chilled-out somewhat in his old age. So, whilst I was more than happy to help, I thought it was going to be a bit of a hassle.

The funny thing is Shabba has now been with us here for a week, and not only am I really enjoying having him to stay, I have to confess I have really noticed the benefits of his presence on my health and mood.

Over the last couple of weeks I have been having a bit of an ‘amber’ patch (hence I haven’t blogged recently) – I’m not completely ill (red), but not exactly well either – I guess many of you ‘loopies’ will know what I mean - but Shabba’s constant cheerfulness and general agreeableness has really helped lift me! Obviously gentle exercise is also something proven to improve lupus symptoms, so having Shabba to stay has also meant I have been getting out in the fresh air and getting some exercise, at a time when I would have been inclined to ‘hole up’ and stay in. Dare I say it, all this sounds like therapy ... pet therapy at that!?

In search of explanation I found this which seems to make a lot of sense:

http://stress.about.com/od/lowstresslifestyle/a/petsandstress.htm

It seems even the established medical profession see something in it. If I manage to persuade my husband to let me get a dog of my own (unlikely: he is as stubborn as me) maybe I’ll see if I can have it added to my prescription!

See:

http://www.guardian.co.uk/society/2005/aug/08/health.uknews1

I am also glad to say that if I was ‘prescribed’ a dog, a good friend of mine has promised to let me know if I show signs of turning into a weird, eccentric, ‘pet lady' whose dog is patently a child substitute (signs of this include cooking meals for pets or dressing them in any kind of clothing – and bows in their hair are definitely out, even jewelled collars are borderline in my book!) to ‘nip it in the bud’ ...

Anyway, on a more serious note, all this just goes to show that it is worth considering everything, and that anything is worth a try - even if it is not something that you would naturally think is for you. You never know, it could work out better than you think.

Solving Energy Crises

2009-02-04T04:54:00.000-08:00

As the environment is such a topical contemporary issue at the forefront of social thinking today, it permeates the media and politics everywhere. Now, I’d never describe myself as an environmentalist and I am certainly no ‘eco warrior’ (although all due respect to those who are!) but it would be impossible to be oblivious to the fact that the world is facing an energy crisis and that finding ways of saving energy and finding new ‘alternative’ energy sources is a necessary modern preoccupation.

This got me thinking. On a personal level, energy (or lack of) is something that I have always been preoccupied with too. I think it’d be fair to say that most ‘loopies’ have issues with low energy as it is one of the more universal symptoms of lupus that can even be problematic when all other symptoms are under control. Doctors find it difficult to treat and ‘loopies’ find it hard to live with. I find it hard to explain to others because when you say you feel ‘tired’ it just doesn’t cut it and sounds a bit lame. In reality, the word ‘tired’ just isn’t right and that’s not only because it’s a gross understatement, but because it doesn’t accurately depict the unhealthy feeling I am trying to convey. I don’t think there is a word for it or if there is I don’t know it, but I guess if I was being more accurate, I’d describe it more like heavy waves of feeling inexplicably ‘drained’ or as being peculiarly ‘bled dry’, ‘dissipated’, ‘consumed’, ‘siphoned’, ‘sucked’, ‘spent’ or ‘depleted’, or all of the above! Perhaps ‘loopies’ could say it’s like suddenly ‘all their get up and go, has got up and gone’. But all this would be a bit too much to go into.

But I diverge. The point is: managing this personal ‘energy crisis’ is important to living well with lupus, as doing so effectively enables us to get on with life more as we would wish, and I have found that it has been helpful to use the two approaches being applied to the global crisis – energy saving and finding alternative energy sources – to think about ways to approach my own.

On these lines, here are a few examples and tips that I’ve discovered help me manage my energy, but there are many more:

Energy Saving

As energy is limited, spend it wisely …

View energy like money in a bank – you only have so much so decide carefully how you are going to spend it
Rest is like credit so remember to use it to ‘pay back’ what you take out – a big overdraft leads to trouble

If you think it is worth it, a strategic ‘blow out’ is OK every so often – it’s good for the soul!

Other helpful energy savers I use include:

Shopping and banking online
Getting domestic help when necessary (sometimes paid and sometimes from kind family and friends)
Learning to say ‘no’ when things are getting too much (in the nicest possible way!)
Resting well – find the right place and designate the time, and make sure others respect it. The quality of rest counts.

Alternative Energy Sources

Yoga

Original Source Mint Shower Gel: http://www.originalsource.co.uk/

Neal’s Yard Remedy to Roll For Energy:
http://shop.nealsyardremedies.com/product/1689/Organic_Remedies_To_Roll_For_Energy
OK, caffeine in moderation, but they said in the war ‘tea revives you’ and I am a great believer! I live by ‘a nice cup of tea’.
If I am feeling whacked and have to suddenly pull myself together, I find brushing my teeth is a good instant ‘quick fix’ boost
Eating breakfast. It is not called the most important meal of the day for nothing! No excuses: make time! If you do it every day you will wake up hungry looking forward to it. Makes a real difference to energy levels throughout day. Anything with oats is especially good. Using the environmental analogy this can be seen as a highly sustainable energy source

And finally, remember that as well as saving and boosting physical energy, boosting emotional energy helps you get by. For me, this could be nattering to a friend on the phone or making something nice for a loved one (yogurt cake and flapjacks are my specialities). Equally, avoiding people who drain you emotionally is a good idea – energy is too precious to waste on negative people.

I’m never sure if anyone reads any of this (!), but if you are I'd really appreciate any more ideas for ‘energy savers’ or ‘alternative energy sources’ so please feel free to leave any in comments!

What's Your Weather Vane?

2009-01-26T09:01:00.000-08:00

Why it could be worthwhile identifying your 'weather vane' symptoms

It has occurred to me that one of the key ways I have started to manage life with lupus far better than I did in the past is because I am far more conscious of it than I used to be and therefore tend to ‘nip’ any nasty lupus action ‘in the bud’ before it gets too hardcore.

The key is spotting the signs and dealing with it before things spiral out of control.

Take this week for example. My husband has had a nasty on-going cold which I had miraculously seemed to avoid (see previous post!) but last week the inevitable happened and I got a mild version too. This weekend the roof of my mouth turned into one giant ulcer and each side of my mouth ulcerated too.

Now, this is something I have become quite used to, as in recent years it has been a clear indicator that the lupus has been ‘sparked’. In the past I might have tried dealing with it by ignoring it and hoping it’d just go away or if it got unbearable by putting something on it that I bought from the chemist: after all, why make a fuss over something so minor? So things were left to take their own course. Unfortunately it was more often a case of ‘one thing leading to another’.

These days I am more aware. I now recognise that obviously having a cold has ‘pissed off’ the lupus. I now recognise that although admittedly painful, for me mouth ulcers are no bad thing. This is because they act as a kind of ‘weather vane’ to tell me which way the ‘wind is blowing’ with my lupus and so, in consultation with my doctor, the situation has been address and my meds altered accordingly and hopefully and major flare has been averted. Fingers crossed anyway!

Over the years the symptoms that act as my ‘weather vanes’ have changed but I reckon if you are aware of yourself, you soon get to learn what to look for as your ‘tell tale’ signs at that time. I find if you make sure you look after yourself and get help at the point your ‘weather vane’ changes, the situation often stays more manageable.

Getting bugged by bugs

2009-01-15T04:47:00.000-08:00

I have been desperately trying to avoid getting an infection this winter but at this time of year when bugs are rife, simply leaving the front door feels like a health hazard.

Obviously, everyone is keen to avoid sickness bugs, coughs, ‘flus and colds, but for your average ‘loopy’ this time of year is a nightmare. Not only are we more prone to catching things anyway due to the abnormalities in our immune systems, the drugs many of us take open us up even further to infection (recently my drugs went into overdrive and virtually cancelled out my white blood cells entirely). And, if and when we do catch something nasty, it can lead to a lupus flare. All in all, it’s not great!

After bad experiences in the past and a better spell of health recently, I have been really determined to try and avoid catching anything, but this is easier said than done.

I tried putting myself in a kind of ‘quarantine’ by staying at home but could only keep this up so long: there were things to be done, places to be and people to be seen. Even when I did manage to ‘hide’ at home problems arose. My husband came home from work reporting stories of a whole host of unpleasant bugs flying around his office. One ‘loopy’ friend, who took part in the research, told me she was having a similar problem. In fact when her husband developed a cold she took to wearing a mask (usually used by decorators to avoid toxic fumes) to protect herself, and last I heard she was contemplating goggles too- she wasn’t sure what the postman thought when she forgot and answered the door in her protective wear!

When I did leave the house it was virtually impossible to find anyone who didn’t think they were infectious in some way and public transport felt like a death trap.

So far I haven’t got off scot free, but lighter than usual, but who’s to say for the rest of the winter. Fingers crossed. The only advice I can offer is obvious: where possible try to avoid infectious people and densely crowded places and be scrupulous about hygiene. Make sure friends and family know of your vulnerability to infection so they make sure not to come near when they have anything catching. Sleep separately from your partner when they have the ‘lurgy’. I have been using Cuticura Antibacterial Hand Hygiene Wipes to wipe anything and everything I suspect may be of potential danger including my hands, toilet seats, phones in the work place, hand rails in buses / trains (I have tried to be subtle so as not to offend others!), I have used anti-bac soaps and hand gels and also been giving Vicks ‘First Defence’ a go, in spite of my cynicism. So far, so good!

Apparently in Japan it is the norm to be highly conscientious about personal hygiene and you will often see people wearing face masks when they have a cold to prevent the spread of germs. Still, I can’t help but feel like I’m a bit of a prissy wimp. To get over this, perhaps we could try and start a fashion trend for the surgical mask like those worn in Hong Kong during the SARS epidemic as in the picture above ... mine’s the flowery one!

Easing an amber day

2009-01-13T10:45:00.000-08:00

I am having an ‘amber’ day today.

You may be wondering what the hell it is I am talking about. Let me explain: it comes from the ‘code’ I use as a way of expressing quickly and simply to others (my friends and family mainly) ‘where I am at’ on that particular day, because as many ‘loopies’ know, how you feel can very hugely day-by-day. This means it is not possible to know how well I might be from one day to the next. (I admit that if it wasn’t something I had experienced, I would probably be very sceptical. I’d probably think it was an excuse for someone to be lazy or to avoid things when they fancied it – so I fully forgive any ‘doubting Thomas’s’ out there, but I assure you it’s true and it’s a real pain!)

A ‘green day’ is a good day where I have a fair level of oomph and feel well in myself. A ‘red day’ is when the lupus has flared and I am unwell with symptoms. An ‘amber day’, like today, is when I just feel inexplicably ‘low’. There may be some obvious symptoms, but really it’s just an incredible lack of energy, like the bones in my limbs are made of lead and any ‘get-up-and-go’ has been suctioned out of me.

It struck me today how much better I deal with ‘amber days’ these days. I used to ignore what my body was saying and used shear inner stubbornness to force myself through whatever it was I had planned for that day, however manic, stressful or energetic. I now refer to this as ‘overriding’. It is my will versus lupus. This was OK in the short term, but eventually it caught up with me and lupus won. All in all, I learnt the hard way - it’s a bad idea!

Today is a good example of the new ‘reformed’ me, which seems to mean I am able to live much better with lupus.

My ‘to do’ list for today was quite extensive, but when I found this morning I was on a lower ebb than I would have liked, I looked at the list and realised that there were only certain things that I had to do today (some work emails and go to the hospital for my blood tests), so I prioritised these. Everything else has been ‘bumped’ to tomorrow’s list (I’ll review it and potentially re-juggle again depending how I feel – work for next week and housework can wait a while).

Tonight’s dinner is going to be something simpler than I had planned – but still tasty and healthy. Tasty is important to keep the spirits up, but I also feel healthy and nutritious is important so I know I am giving my body the best chance to restore itself. For any ‘amber day’ I recommend this Nigella Lawson Recipe (that she aptly calls ‘Noodle Soup for Needy People’) for tastiness, nutrition and general ‘feel good’ factor – although if I don’t have the ingredients I just vary it a bit to fit whatever ingredients I have in my fridge:

http://www.bbc.co.uk/food/recipes/database/noodlesoupforneedype_87338.shtml

On an ‘amber day’ I now make a point of doing some ‘restorative’ yoga, which involves using yoga poses that have a particular ability to leave you feeling nourished and well rested. If you are sceptical about yoga (as many often are at first), you could think of it as ‘active relaxation’. It certainly uplifts me a bit – it helped a lot today. I will write more about the many ways in which I find yoga helps improve life, and how I find it is especially helpful for dealing with lupus, in the future but for a bit of general info now see:

http://www.wikihealth.com/Restorative_yoga_poses#Benefits_of_Restorative_Yoga

For me drinking Jasmine Green Tea and a telephone chat with a friend are also great ‘amber day’ props. I also find if I can, pottering about doing easy and gentle tasks helpful because it means I feel like the day has been constructive (today I re-potted a plant that had needed doing for ages which required minimal effort, but getting it done still gave me a sense of accomplishment and satisfaction). I’m just wondering if it would perhaps be worth ‘storing up’ these sort of easy, more ‘pleasurable’ tasks especially for ‘amber days’?

Today I also took a short walk (and coincidently bumped into a friend with her baby, which was a nice surprise) as I knew from past experience that cabin fever makes ‘amber days’ worse. One ‘loopy’ in our research gave an excellent tip: unless it really isn’t possible, always get showered and dressed at the beginning of the day, even if you are not going anywhere. It makes you feel far better than lolling in your PJ’s.

All in all, today hasn’t been so bad. In fact, I’d go as far as to say that going along with the whole ‘amber’ thing, rather than resisting it has turned a day that would have been a real struggle into a relatively good day.

And, I am hoping that on top of all this, an early night tonight will be enough to make tomorrow ‘green’.

Happy New Year

2009-01-12T07:10:00.000-08:00

This is just a quick note to apologise for not having posted anything for so long after having got off to such a flurrying start. First I caught a sickness bug that I picked up in the hospital when I went for my weekly blood tests which put me out for a while. This had a knock-on effect on other things: I had to catch up with work and Christmas preparation – (you know how busy it gets!?), and then came the holiday season. Anyway, enough excuses! I just wanted to say ‘happy new year’ to anyone reading this and thank you so much for taking the time to do so.

Be assured I am now on the case of writing some more bits and pieces that will follow over the next few weeks, and I hope they will be of some interest to you. My aim is to share, discuss and get advice from other ‘loopies’ about getting the most out of life despite lupus. Ideas for themes that might be relevant and useful come from our research as well as my own experience (hence the next feature being about trying to avoid infection – or not, as the case may be!) and I will also share my story so you know why and how this whole Living Well with Lupus business came about. Other issues I am considering discussing this year are relationships, mouth ulcers, Reynauld's, hair loss and yoga.

Aside from wanting better emotional and practical support for people with lupus, my other major preoccupation is raising general public awareness and understanding of the condition. For a disease that affects so many people, lupus has a low profile, especially here in the UK. The good news is that I had an idea when I was in the shower this morning that may help with this (don't worry, I am not planning a 'Fathers for Justice' type stunt or anything like that!) but before I get too excited I need to find out if it could be a goer and if it is, you'll be the first to know.

All in all, I hope you'll find it is worth watching this space in 2009 and keep in touch ...

Lupus Through the Looking Glass

2008-12-08T07:55:00.000-08:00

Getting to grips with the peculiar relationship between lupus and personal appearance

I’d been through the mire. I’d undergone a whole host of hellish treatments. I’d been through the (thus far) lowest, sickest and most desperate time in my otherwise very fortunate life. It was with a dubious sense of somehow being ‘cheated’, and even with a feeling of mild irritation that I received the comment from kind friends and loved-ones trying to offer well-meant consolation, “the funny thing is, you look so well”. After all, weren’t they right? Couldn’t this be a small silver lining?

Another scenario: trying to convince various doctors in the absence of having anything actually physical to show them that I felt bad; that things were definitely ‘not quite right’. I felt I needed something to prove things weren’t in order. This was not helped by the fact that all the tests they were doing confirmed what my appearance suggested: I was right as rain.

As you may well have experienced yourself, with lupus, looks can deceive. The level of ‘butterfly rash’ I get is relatively mild. It has often actually appeared as a rather flattering splatter of ‘rosy blush’ on my cheeks and there is also nothing like a bit of a fever to give me a ‘healthy glow’.

And yet on the other hand, I am as vain as the next man (or woman!) and on the occasions where there is distinct visible evidence of what is happening within, either as a direct result of the lupus or a side-effect of the drugs, I’m mortified!

I can’t help but feel a bit guilty worrying about my appearance in the face of a serious illness, but I was reassured to find I am not alone in this when we did our research. The important interrelationship between mind and body is something I have learnt cannot be overstated and is absolutely vital to Living Well with Lupus. I guess in this context it is important to respect these fears and concerns however trivial they may appear in the wider scheme of things. It is undeniable that things such as losing hair or having a rash on your face can have a huge impact on anyone’s sense of wellbeing and identity.

A funny example of my arguably ridiculous vanity is when I was fresh out of Intensive Care. I had just been moved to another ward and my first request was that Tony should bring in a razor to add to my wash kit. When he did, I got him to push me in my wheelchair along with the intravenous drug wheelie contraption that was attached to my arm, to the shower cubicle so I could shave my armpits that had had significant opportunity for growth when I’d been ‘out of it’ on life support in Intensive Care. It was an archaic NHS building (since then rebuilt thank heavens!) and unfortunately the faulty shower caused the ward to flood, but at least my armpits were as smooth as a baby’s bum!

The personal appearance miseries that have been inflicted on me by lupus so far include moonface, acne, glowing death-white fingers (and toes), swollen knuckles, a crimson red moustache rash (that I thought would never go), burst veins from too many needles that made me look like a junkie – oh, and some ‘unwanted’ hair growth from those damn steroids - nice! Weight gain (due to Prednisolone) and hair loss are other horrid physical manifestations that all too frequently distress ‘loopies’.

In a similar way that the “but you look so well” comment grates when there are no physical symptoms, there is something slightly irritating when again well-meaning others pretend that they can’t see anything when the visible evidence is right in front of them! Denying it (even if it may seem like a fuss about nothing to them) makes you feel dismissed and unwarranted in your natural worries. On the other hand, making a joke about it is the reserved privilege of my younger brother, who is the only one who can get away with tugging on my ‘moon’ cheeks saying “but it makes you look so cute!”

For anyone out there now wondering how the hell they are supposed to respond in a minefield of such sensitivity, I find the approach that both Tony and my good friend Kirsty take is the best. They simply agree that “Yes, that is a nasty rash / moonface (or whatever), I can see why it is making you miserable” but then go on to say something reassuring along the lines of “at least it won’t last forever and it probably appears far worse to you than it does to everyone else”.

So what to do about all this?

As ever, I have found the way forward is acceptance, e.g. ‘OK, I now seem to have a red moustache’ (or whatever it might be) followed by a plan e.g. ‘what am I going to do about it?’ Kicking, screaming and lamenting are all futile (although possibly therapeutic if used in measure and kept brief!) but accepting and tackling the situation is constructive. Tackling it can often be twofold: emotional as well as practical. Changing your mindset by being realistic, kind to yourself and consciously putting it in perspective is very helpful. As the late Richard Carson put it, try turning your ‘melodrama’ into a ‘mellow-drama’!

Beyond this, practical measures are called for. I plan to write in more detail about particular individual beauty issues at a later point (my personal beauty tips mainly revolve around dealing with Raynauld’s Condition , moonface, avoiding steroid weight gain and acne). I also always seek suggestions from you.

In the meantime, here are some general beauty things I’ve learnt that help me:

Discuss whatever it is it with an appropriate professional (albeit a hairdresser, beautician, dietician) to find out what advice they have and what can reasonably and safely be done – don’t forget to ask your doctor too
For disfiguring skin blemishes Red Cross do regular camouflage clinics – I attended one at The Louise Coote Lupus Unit and the lady was very understanding, kind and helpful and prescribed concealer and powder as well as showing me how best to apply it

http://www.redcross.org.uk/standard.asp?id=49354
Treat yourself to nice products and pamper yourself to make you feel good about yourself and make the best of your physical assets, to help draw attention away from less satisfactory things. I was bought some gorgeous bath and shower oil called ‘Relax’ by Aromatherapy Associates that never fails to make me feel at least a little better

www.aromatheropyassociates.com
Smell good. Oddly, a little splash of my favourite perfume always makes me feel I somehow look better!
Wherever possible, smile. It works inside and out.

Accepting a changing story

2008-12-04T01:31:00.000-08:00

I have moved from getting by and surviving with lupus, to getting on and thriving - looking back I find out why ...

You may have noticed that so far I have not written much on this blog about my own particular lupus ‘story’. The reason I raise it is because I have been asked by others who are helping me with Living Well with Lupus, why this is. They reckon that it would be a good idea to include my story because it would firmly show Living Well with Lupus is rooted in personal and real human life, which is very much the intention. Having thought about it, I agree and I do intend to post something at the beginning of next year with the aim of launching a ‘Loopy Stories’ section on this blog where different ‘loopies’ will share their stories, thoughts and tips but this got me thinking, ‘why hadn’t I done it spontaneously?’ and the answer was illuminating ...

The first and most obvious reason is that I am really conscious that I would never want the whole Living Well with Lupus thing to be about me as a kind of Daisy Seale-Barnes, ‘me-me-me’ ego showcase’. I want it to be for and about all ‘loopies’, their supporters and most especially for the ‘loopies’ who directly helped us with our research, who also inadvertently helped me personally by being so inspiring at a time I felt I was living on a petrifying lupus rollercoaster. They showed me I was not the only one to be going through this and I was not the only one looking for answers.

The next reason is a little more complicated to explain, but when I thought about it I realised how important it was because in this explanation I was able to identify the key to what turned the situation around for me and made me able to cope much better and live more happily with lupus than I had ever been able to before.

The fact is I already wrote my ‘story’ in February 2007 for St Thomas’ Lupus Trust website (you can find it at http://www.lupus.org.uk/patients/daisy.htm) and for some reason I kind of felt ‘bound’ to it which made me reluctant. This was because whilst the events of the story remain fact (although they have developed somewhat since then) I no longer feel comfortable with the underlying attitude that comes through. I didn’t want to use that version of ‘Daisy’s Story’, because I no longer see it as an accurate reflection of how I feel today. The ‘me’ that wrote that story then, is not the ‘me’ of now and the attitude of the old ‘younger me’ doesn’t reflect the message I want Living Well with Lupus to promote and I suppose my new more enlightened self feels a mixture of embarrassment and pity for the me of that time. I was in a far worse place than I realised.

In fact having just read it again, I realise that there is just one sentence that particularly jars. It is when I say that “I will keep fighting back, brushing [lupus] aside whenever possible” but I also shy away from some of the other ‘defiant’ language of battle I used, such as when I talk about “winning” as if there were some kind of ‘competition’ between me and lupus.

I must confess in the early days after my diagnosis, before my symptoms became so grave and long before I wrote ‘Daisy’s Story’ in February 2007, I was under the impression that my strong will and stubborn nature would mean lupus would never become a major problem for me. Although I made a few token life ‘tweaks’ to address it, I resolved to carry on as per normal, but I firmly held on to what I now realise was a slightly arrogant and very naive mindset. If I am honest, I thought lupus only ‘got to’ those with a weak will and was relished by ‘moaners’ as it gave them fodder and focus for their negativity. Thankfully by the time I wrote my story I had been humbled from this conceited attitude and had moved on a long way, but I still had a way to go.

With the passage of time and events that have occurred since then I have learnt much more and am now living a lot easier as a result. What has changed is that I finally learnt that it is futile to try and ‘beat’ lupus by denying, rejecting and battling with it because, like it or not, it is in my life. I learned the hard way. After every flare-up I'd try to carry on as if nothing had happened, as if lupus didn’t exist until eventually I realised that this approach only ‘enrages’ the lupus until eventually it flares-up in anger - sometimes sooner, sometimes later.Since this finally sunk in things have been much better.

In my favourite little book Don’t Sweat the Small Stuff, Richard Carson suggests that we open ourselves to “’what is’ instead of insisting that life be a certain way”, and that by “surrendering to the truth” we gain a deeper perspective and enjoy greater peace of mind. I think it was in this vein, that by accepting that ‘it is the way it is’ when it comes to my lupus, that these days I get on far better.

Nowadays I adopt a softer more malleable attitude and live around it. The way I see it: rigid things break and smash into lots of pieces, soft things mould and stay in one piece. With lupus it is necessary to be flexible and to develop patience in abundance!

It is very important to say that this does not mean I allow it to stop me doing what I want to do, or make a bigger deal of it than it needs to be; quite the contrary. Funnily enough Tony and I were talking about this the other night, how after the events of the last few years in many ways we are now living life in a far more desirable and enjoyable way than we did before! Because we have to give so much more thought to what is important to us individually and as a couple, we have really established priorities. Once priorities have been identified it is possible to move forward. In our research we described the steps as »Stop »Think »Plan. Admittedly, certain trade-offs and compromises have to be made, but the truth is I now do more of the things I want to do, spend more time with people I want to spend time with, eat the way I want to eat, work in a way I like to work than I ever did before, and I am much better at saying ‘no’, because I am clear about my boundaries.

It seems we have developed a new appreciation of life and have become acutely aware of how valuable every healthy moment is. Obviously priorities change and plans shift accordingly. When lupus does decide to make an appearance, we accept it and deal with it in a calm and pragmatic way. Perhaps unsurprisingly the lupus seems to have mellowed too. By recent standards, my health has been much better.

All in all, I am looking forward to retelling my story in January, because now that I have accepted that lupus is one aspect of my life it has become a happier and more fulfilling story to tell.

On my Soapbox

2008-12-04T01:21:00.000-08:00

Hospital parking charges are adding insult to injury

Since the beginning of last week I have had to be in and out of my local hospital more frequently than usual due to a dramatic drop in my neutrophils and white blood count, which are now at an unsafe level. It is perhaps because I am now essentially in ‘quarantine’ and feel a bit like a caged animal that I have had time to brood on the issue of hospital parking fees.

Before every hospital visit, I have to scramble around to make sure I have enough change in my purse or go to the cash point and get a note to turn into change for the machine: hassle, time, stress.

As I am never entirely sure how long I am going to be, I always end up paying more parking fees rather than less to cover my back. The fine for not paying or underpaying is big and clamping is in operation. The machine gobbles the coins greedily. It is difficult to know how much money to put in because it is hard to guess how long the visit will take, sometimes there are delays, sometimes I am sent for tests, or to the hospital pharmacy all of which take extra time, but sometimes I am ‘in and out’ like a shot. I never know.

It seems that the system is designed to get as much money from you as it can. It costs £2 an hour. The other day to be on the safe side I estimated I would be an hour and half, so I put in £2.50. The ticket the machine produced, showed just one hour! Apparently, you have to pay £4.00 for one to two hours and there is nothing in between!

This cost and stress is nothing compared to what my family have had to go through during times I have been an in-patient, when they have spent hours and days at my bedside. Anguish and anxiety don’t exempt you from parking fines. There was an emergency situation when there were no parking spaces so we abandoned the car in a residential spot with a note explaining the predicament. I ended up falling unconscious in A&E and my poor mum who was with me in great distress, later discovered she had given a parking ticket to add to her woes. My husband also got a parking fine because he was late back to top-up his fees after another traumatic night with me in a desperate state. He got small satisfaction by calmly telling the warden who was issuing the ticket about the state he had left me in and inviting him to seriously consider what he had just done and how he would feel if it was his partner, then went on to wish him a good night’s sleep. OK, it is probably a case of ‘shooting the messenger’ but I think it made Tony feel a bit better at the time and hopefully encouraged the warden to think about compassion.

I use my experiences to illustrate the point, all the time knowing that this affects everyone. Most ‘loopies’ and their families are likely to have had similar problems and spent a small fortune on hospital parking – in fact anyone with any kind of chronic illness or ongoing health problem is in the same boat. All in all, it costs a fortune not to mention extra stress and hassle at a time people need it least!

Thankfully both Wales and Scotland have made the decision to scrap hospital parking charges, so it seems that this madness is now confined to England (and potentially Northern Ireland who I think are still in the process of reviewing it). And I thought we were supposed to be a ‘United Kingdom’?!

Anyway, in the spirit of the ‘proactivity’ and ‘assertiveness’ of a ‘loopy’ choosing the Living Well with Lupus path (and because I am climbing the walls stuck at home in isolation!), I Googled ‘hospital parking charges petition’ and found the following, and I for one am going to add my name:

http://www.ipetitions.com/petition/toscraphospitalparkingcharges/index.html

Managing Medicine Muddle

2008-11-27T07:48:00.000-08:00

As I discovered the practical reality of having to take so many medicines each day can be a real pain and can eat up far too much precious time and energy. Here is how I got to grips with my medicine muddle ...

Most ‘loopies’ have to take some sort of medication daily. It is not unusual to walk away from the pharmacist with a shopping bag brimming full of what looks like a wonderful sweet shop of pills of different colours, shapes and sizes to take each day. However, clearly unlike the sweet shop an ad hoc ‘pick and mix’ approach is not a great idea when it comes to taking your medicines!

As I discovered for myself, managing medications on a daily basis can be very confusing and it is easy to get in a muddle, especially when you are either really ill, or busy. It can also be easy to forget to take it all, or to remember whether it was today or yesterday you downed that handful of tablets?! I found that getting through the obstacles of obtaining the medicines from the GP and pharmacist in the first place, then working out how much of each drug to take, and checking you take the right number of the right tablets at the right time all added to the confusion and the whole thing was a real hassle.

I know things got worse each time new pills were added to my repertoire and to make matters worse, additional medications usually corresponded with my lupus being worse and my energy and patience being lower. I used to riffle through a variety of packets and boxes every morning, assembling a little pile of pills next to me on the breakfast table, that I would often joke could be added to a bowl of milk and called my ‘second breakfast cereal’. Each time I just had to hope that I had done it right and hadn’t missed anything or accidently taken some sort of fatal overdose. Daytime and evening pills were more prone to being forgotten entirely in spite of my best intentions. It was all ‘a bit hit and miss’.

However, after this rather haphazardous approach and thanks to the ‘subtle hint’ gift of a pink pill dispenser from my ever-concerned Mum, I eventually managed to streamline the process and become far more adept at taking my pills as prescribed.

Here are some of my top tips to help make it easier:

Prepare a personal medical routine preferably on your computer and update it each time there are any changes. This acts as a quick reference and helps you to be clear about what to take and helps you avoid making mistakes. Include drug name, dose, how many pills, what it is for and when to take it and make a note if any should be taken before or with food and when/if to alter the dose. It is also handy to take with you when you visit the doctor / pharmacist
Use a weekly pill dispenser to allocate medicines at the beginning of the week. OK, it takes a little while to do, but if you set half an hour aside each week and use a print-off of your daily medical routine to help you (as described above) it pays off. For the rest of the week you no longer have to waste time fishing around, looking for and opening different packs and the chances of making a mistake are significantly reduced. Importantly, if you are a bit forgetful like me, it is a way of checking whether or not you have taken your pills that day. I bought mine from www.redidose.co.uk and it has the advantage that each day’s pills are in separate containers labelled with the relevant day of the week (if you are away from home you just take those you need) and each of these is divided into ‘time of day’ compartments so you can divide medicines into the times of day they need to be take. All handy stuff!
Keep a dose of crucial medicines in your bag so you have them at all times, so if you forget to take them in the morning and remember later you are able to take them immediately. It also gives you the freedom to make spontaneous decisions to stay away overnight without messing up your medicine routine ... after all, you never know!
Sign up with a pharmacy that has a repeat prescription Delivery & Collection Service. It is easy to realise when it’s too late that you have run out of an important medication and it is frustrating when you are spending far too much precious time to-ing and fro-ing between the GP surgery and pharmacy. Since I joined up my local pharmacy’s repeat prescription Collection and Delivery Service these problems have become a thing of the past. It goes like this: I send an email to my GP surgery requesting the medicines I need, two days later I get a phone call from my local pharmacy to say my medicines are ready. All I have to do is to pick them up from the pharmacy and on one occasion when I was very poorly, they even delivered them to my door! It’s as simple as that. I use ABC Pharmacy but there are others who offer the same service.

http://www.abcpharmacy.co.uk/corporate/branches/locator

Consider buying a Prepayment Prescription Certificate if you don’t qualify for free prescriptions. When I came out of hospital with a new ‘shopping list’ of medication and found out how much it was going to cost me in prescription charges, I nearly fell over backwards! Thankfully, someone told me about the Prepayment Prescription Certificate and it has saved me a lot of money. If you pay for more than 3 prescriptions a month it is worth considering buying one. I pay £102.50 a year (and you can pay in instalments)

For details: http://www.ppa.org.uk/ppa/ppc_intro.htm

Getting your head around lupus

2008-11-27T07:29:00.000-08:00

Living Well with Lupus is all about doctoring the way you think ...

This analogy, to which you may relate, is one that I devised in the middle of the night when I was suffering from steroid-induced insomnia at a time when my lupus was very bad and had started to take its toll on my naturally positive and cheerful disposition:

‘Imagine that your body is your ‘house’ and ‘home’. ‘You’ (your soul and being) live in your house. Lupus visits your house. Sometimes he is a slightly irksome visitor that doesn’t stay long although it is a big relief when he has gone, other times he is a psychotic and vicious squatter who has gate-crashed and refuses leave. Either way, he always has a key. The damage he does to your ‘home’ can range from minor misdemeanours to reeking devastating havoc. As an occupant of the same house, the more damage he does the more it starts to affect you. It wears you down. Your personal living space is violated. At a certain point the damage can go beyond the ‘bricks and mortar’ of your house (your body) to the occupant within (to ‘you’, your ‘core being’). This is when it starts to get personal. Whilst the builders, decorators and cleaners (medical professionals) can deal with the physical repairs ... but it’s up to you to fix the emotional damage for yourself’

In the introduction to his fabulous book ‘Don’t Sweat the Small Stuff’ (a personal favourite of mine so sorry if I end up harping on about it!) Richard Carlson quotes William James:

“The greatest discovery of my generation is that a human being can alter his life by his attitude”

This insight is critical when working out how to get by as best you can with lupus because, let’s be honest: quite frankly having lupus is rubbish and something no one in their right mind would choose. In fact, because the word ‘lupus’ is the Latin word for ‘wolf’ it has often occurred to me in my darker moments that it bears a striking similarity to the duplicitous wolf in the fairytale ‘Little Red Riding Hood’. Lupus is the kind of evil character that would eat your Granny, disguise itself and then try to eat you too! After all, it is widely known as ‘The Master of Disguise’ and the ‘Disease with 1000 faces’.

But really this leaves two choices for someone with lupus: allow it to ‘eat you up’ and essentially dominate your life, or adopt a positive attitude and learn to manage and live life well in spite of it.

Living Well with Lupus is for anyone interested in option 2.

The whole Living Well with Lupus project is dedicated to exploring the emotional and practical problems ‘loopies’ encounter and how to develop the best attitude and behaviour to overcome them, so we hope you will find (and contribute) lots of ideas and details as it goes on. In the meantime, here are ten key overarching mindset ‘gems’ for ‘getting your head around lupus’ (many of which came from the lovely ‘loopies’ in our research) that offer a great starting point for ‘loopies’ far and wide:

Whilst always being mindful of lupus, live around it; not by or through it

Focus on making the most of what you can do, not what you can’t

View yourself as a person with a chronic illness rather than a chronically ill person

When it’s bad remember that "It's just a moment. This time will pass"

Use creative ways to work around the obstacles the lupus presents and be open and flexible to making changes

Find your ‘inner-hippy’; being chilled is one of the best things a ‘loopie’ can do to help themselves

Be kind to yourself. You are only human. You can only do so much and remember no one is perfect (and anyone who was, would be decidedly dull anyway ... which arguably makes them also less than perfect like the rest of us!)

Learn to be a ‘tough cookie’ by talking yourself ‘up’ when you start feeling you are being defeated

Energy is limited and a precious commodity for a ‘loopie’. Use it wisely.

‘It’s good to talk’; find someone who will listen to you when you need to offload

Introducing Living With Lupus

2008-11-27T07:25:00.000-08:00

This blog is about how to get by living with lupus in the real world: that is when you step outside the consultant or doctor’s room and actually have to get on with the rest of your life.

It is intended to discuss the kind of information I would have like to have been handed alongside the medical literature I was given on that bemusing day I was first diagnosed with having a disease that I had never even heard of and couldn’t even say. ‘Systemic Lupus Erythematosus’ hardly trips off the tongue, and it certainly doesn’t sound very friendly! On that day, little did I realise how big an impact on my life as a whole it would have.

Whilst healthcare professionals usually provide medical and some superficial practical lifestyle information, the patient is often not prepared for the wider psychological, emotional, lifestyle and practical implications of ‘sharing their lives’ with lupus, which they are necessarily bound to do, like it or not. ‘Lupus Now’, the magazine produced by Lupus Foundation of America can be very helpful but much literature often only scratches the surface of ‘lupus lifestyle’ without really getting into the real ‘nitty-gritty’ or helping with specifics. There is also a lack of information, help or suggestions on how to mentally and emotionally tackle lupus, something that can be challenging. For me, the richest source of help on this front comes from other patients but even this can often be buried beneath layers of negativity or scary stories that can be off-putting. There is clearly still space for a positive source to pool suggestions for this kind of thing based on real life experience.

I am approaching this subject from a number of perspectives.

Firstly, as a lupus patient: I was formally diagnosed in 2002, but as is often the case with those diagnosed with lupus, realised with hindsight that I had lived with the condition for much longer than that. The impact lupus has had on me has varied over the years. I have had some years of ‘niggley’ lupus where symptoms are irritating but by no means unmanageable, to ‘devastating’ lupus that has been life-threatening resulting in Intensive Care and heavy-duty treatment. So the fact is it has become a significant albeit decidedly unwelcome, part of my life which I have had to try to get some kind of handle on.

Secondly, I approach this as a ‘modern’ woman: I consider myself fairly regular girl from London, living my life with all the concerns, interests, pressures and preoccupations typical of women today. Unlike some of the information prepared by doctors and organisations, I address the subject of ‘living with lupus’ from a perspective personal to the lives and concerns of real women.

Thirdly, as a qualitative researcher: because this is what I do for a living (when I am well enough). When I started the process of writing this I found it nigh-on impossible to remove my researcher ‘hat’, so decided to embrace it. Since leaving university (10 years ago now – yikes!) my career as a market and social researcher has revolved around me ‘prying into the lives of others’, mainly by listening intently to people but also using other techniques. It is also convenient that my specialism has been health related and personal subjects. Over the years, I have researched topics as diverse as living with obesity, sexual health, personal hygiene and vaginal thrush – oh, the glamour! Still, this has provided me with a solid foundation (and a rich bank of other highly qualified research professionals) for exploring with other women how they manage life with lupus and to help illicit from them strategies and tips that could benefit others. Who is better to help and advise on the subject than someone who has been living it and doing it themselves?

The research project I undertook with my respected colleague and treasured friend Elena in 2007/8 gave us more than we were bargaining for. Not only did we unveil some really poignant insights, we made a connection with some very inspiring individuals who are now supporting us on our mission to help people with lupus find the most positive way to approach their lives and to help us raise awareness; which is something in itself that would significantly improve the lives of those with lupus.

It is vital to make clear that all this does not pretend to suggest that a single straightforward ‘solution’ to how to live your life, with (or without) lupus! Of course, everyone is different and entirely individual with different perspectives, lifestyles and backgrounds. Lupus is equally individual and has symptoms that are so bafflingly diverse that two patients rarely experience exactly the same thing. In light of all this individuality, everyone’s approach to living with it will be individual. What works for one, will not necessarily work for another. There is currently no cure to lupus or one medical ‘fix’, and similarly there is no one approach to managing life with it. Sadly, I am afraid there is no ‘solution’ as such. However, just as the medical professionals must endeavour to tailor the optimum concoction of drugs to help best treat each patient, it is for each individual with the disease to find for themselves how best to live with it. My research has shown me just how amazing and inspiring patients can be at doing this. Also, anyone who lives with lupus knows that it is not always easy and in some instances it is painfully difficult and far from straight-forward. To say otherwise and pretend that there is always an easy, simple way to get through it, would be to trivialise something that is truly challenging.

Instead, the aim of this blog is to try and explore ways to help ‘smooth the way’. By sharing my own experiences and the lessons I have learnt, as well as those we have learnt from our research with other lupus sufferers, I hope to help identify options and possibilities that can be tailored to fit your own lupus and your own life. They say ‘a problem shared, is a problem halved’. I am hoping that at least for certain things this might work in reverse, and that ‘a solution shared’ could be ‘a problem halved’.

Each monthly entry posted will be designed to explore a particular issue or topic or offer some tips and advice but there is bound to be far more that could be said and we hope you will add comments, advice and help wherever you can.

Our first topic will be ‘Getting your head around lupus’ ... seems an appropriate place to start!