The stuff that dreams are made of

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!

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

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

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?

"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!

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.

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.

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.

Getting your head around lupus

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

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!