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?

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!