Little things, big difference

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

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"

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

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

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

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

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

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?

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

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?!!

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

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

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

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

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

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

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.