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'.

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.

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!

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

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.

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.

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.

Stop to Go

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

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

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

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

Some highly important little sub-points to be remembered:

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

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

Shabba Remedy

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

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

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

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

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

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

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

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

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

See:

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

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

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

Solving Energy Crises

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

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

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

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

Energy Saving

As energy is limited, spend it wisely …

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


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

Other helpful energy savers I use include:

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

Alternative Energy Sources

• Yoga

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


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

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

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

Easing an amber day

I am having an ‘amber’ day today.

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

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

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

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

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

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

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

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

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

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

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

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

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

Lupus Through the Looking Glass

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

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

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

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

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

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

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

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

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

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

So what to do about all this?

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

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

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

1. Discuss whatever it is it with an appropriate professional (albeit a hairdresser, beautician, dietician) to find out what advice they  have and what can reasonably and safely be done – don’t forget to ask your doctor too
   
   
   
2. For disfiguring skin blemishes Red Cross do regular camouflage clinics – I attended one at The Louise Coote Lupus Unit and the lady was very understanding, kind and helpful and prescribed concealer and powder as well as showing me how best to apply it
   
   
   
   http://www.redcross.org.uk/standard.asp?id=49354
   
   
3. Treat yourself to nice products and pamper yourself to make you feel good about yourself and make the best of your physical assets, to help draw attention away from less satisfactory things. I was bought some gorgeous bath and shower oil called ‘Relax’ by Aromatherapy Associates that never fails to make me feel at least a little better
   
   
   
   www.aromatheropyassociates.com
   
   
   
4. Smell good. Oddly, a little splash of my favourite perfume always makes me feel I somehow look better!
   
   
   
5. Wherever possible, smile. It works inside and out.