Changes and Voyages of Discovery

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

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

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

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

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

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

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

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

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

Little things, big difference

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

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

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

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

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

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

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

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

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

http://www.mynewhair.org/

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

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

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

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

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

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

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

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

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

"Change is the only constant"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.