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

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

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

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

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

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

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

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

Avoiding appointment disappointment

I feel like dancing on the rooftop and shrieking with joy because something so strange and marvellous has happened. I have noticed that recently I have consistently started leaving medical appointments with a feeling of satisfaction

Yes, these days when I leave the consultation room after appointments with either my consultants or my GP I feel I have been heard, believed and given the best professional help available. Now, whilst I understand that your average person may not feel this is worthy of such a reaction of delight, because one might reasonably assume that this would not be too much to expect from a medical appointment, for many a ‘loopy’ this is often not the case.

Thinking back I literally get a shiver down my spine when I remember certain medical consultations. Other memories simply enrage me. There were numerous problems: feeling rushed, feeling that the doctor was distracted (one GP even took a personal call on her mobile in the middle of my consultation, so I sat there trying to come to terms with my new chemotherapy drug regime I was on, while she merrily planned her social arrangements for that evening with a friend!) or otherwise feeling the medical professional I was consulting was clueless about my condition. Feelings of intense frustration were also commonplace, especially when I was for a time undiagnosed after being diagnosed, only to be finally and satisfactorily diagnosed once again. But the worst thing of all I felt during these inadequate consultations was disbelieved.

When have enormous respect for someone because of their professional capacity, if they appear to doubt you, it is easy to doubt yourself. There were times when I started to believe that maybe I was just a hypochondriac as the attitude of certain doctors seemed to imply; maybe I was just imagining the headache and making a fuss about the other symptoms. It is odd to feel grateful for a seizure or for finding oneself unconscious in Intensive Care, but in some ways it did me a favour – it vindicated me, it got doctors to take me seriously and it confirmed once and for all I was no joker.

Having given the matter much thought, I have realised that there are a number of barriers which give rise to unsuccessful medical consultations and that blame lays at both the doctor and the patients’ door. I believe there are very few doctors who are truly ‘bad apples’, but there are a some whose bedside manner leaves much to be desired and rather more than there should be whose knowledge of lupus if very limited. This doesn’t have to be a problem unless they are one of a significant number that is dangerously constrained by professional ego. An otherwise decent doctor who is not fully au fait with the condition but who is open to learning is one thing, but one who is ignorant and arrogant is quite another; they can be very patronising and even dangerous. I have come across them all over the years.

Still, I recognise that patients can also make matters worse for themselves. Unless we allow ourselves to accept in our hearts that lupus is unpredictable, difficult to read and currently incurable we can go into our appointments expecting our doctors to be magicians who ‘wave their magic wands’ and instantly prescribe us the answer to all our problems. Sadly, the truth of the matter is there is no ‘one size fits all’ when it comes to treating lupus and doctors have to be given a bit of leeway. When I found a consultant that I felt respected me and was constantly endeavouring to try and help me find a way forward, I accepted a lot of what we had to do together medicine-wise was trial and error. Nothing he could do or prescribe was going to be perfect and provide a complete cure without side-effects, but with much ‘tweaking’ here and there, we were going to find the best possible solution.

This requires good communication which is another thing vital to getting a positive outcome from meetings with your doc. There have been times when I have had so much invested in a particular medical appointment, been so emotional and felt so much of my life rested on it that I have gone in and (quite uncharacteristically) found myself nervous, freezing up, forgetting to mention some of my key symptoms and to ask all my questions. I essentially turned into a passive, simpering ‘yes’ puppet! Realistically, when I was like this, how could any doctor be expected to deliver what I wanted and needed?

So what can we do to avoid these hellish experiences and start getting the best from our contact with the medical professionals? I have turned some of the things that I feel have helped me into the following list of tips

• Have all the relevant information about YOUR medical history to hand to help enlighten doctors you are meeting for the first time and to validate what you are telling them (recently, in an appointment of mine, a copy of recent blood tests, an old MRI scan and a letter from another consultant proved very handy)
  


• If you are going to a medical professional whose specialism is not necessarily lupus (e.g. A&E department, a GP) it can be handy to have some general information on the condition
  
• However infuriated you feel ... never get angry. This is guaranteed to piss-off the doctor, who will instantly write you off as ‘neurotic’!
  


• Be persistent
  

• If it’s not working, CHANGE doctor or ask to see someone else. A lot of people don’t seem to think this is an option, but it is and you can. It may mean a bit of compromise like travelling a bit further, but believe me it’s worth it. After suffering a GP-practice-from-hell I switched to a GP-practice-from-heaven and haven’t looked back. Why I didn’t do it sooner amazes me ...
  


• If you find a consultant / GP you like and feel you can trust, stick to them like glue – they are worth their weight in gold
  
  
• When you are too ill or emotional to fend for yourself or just not up to explaining, take someone with you as your ‘spokesperson’. In some of my darkest hours the formidable combined force of my Mum and Tony was enough for any doctor to reckon with ... but they got the results
  


• Show you are prepared to be reasonable and build a good rapport
  

Let’s not pretend that all this is easy. It has taken me many years and much work and support from my husband and family to get to a point that I’m happy with my medical care, but it is worth it. After all, getting the best from your doctors and consultants is vital to living well with lupus.

What's been going on?!!

After a long, unexplained absence I am back. Let me explain the reasons for my online disappearance...

Firstly, the mundane and practical reason I have not been able to visit my blog is that I have been without a computer for six weeks. A long story I won't bore you, which involved the breakdown of our laptop and investigations that revealed that it would be more expensive to repair than to replace blah, blah, blah. The long-and-the-short of it is that we finally have a new laptop up and running, although none of the data from our old one (we are working on this). It has been a nightmare as I've only been able to pick up emails sporadically and not able to visit livingwellwithlupus.org at all. Strangely, it felt like I'd lost one of my senses. Now I've finally had the chance to get back online, I have discovered a number of new messages and introductions from some fellow loopies out there who have stumbled across the site. Thank you so much. I often feel I am writing into the abyss so it is really motivating to have your support and to find that what I am writing means something to someone; to be reminded that I am not the only one trying to navigate the unpredictable minefield that is lupus. Now I am happily installed back in my little office which has stood empty for so long, I will be responding to each and every message so I hope you haven't given up and will be back to see.

Meanwhile life during this period has been far from uneventful. I discovered, mainly unexpectedly that I am pregnant - now 16 weeks (I told you the holiday in Italy was good) !!!!!!??????????!!!!!!!

Tony and I had planned to start a family after we got married in 2006, but thanks to lupus it was not to be. My doctors knew this was our wish, but until recently the medications controlling my symptoms meant that it was out of the question. Over the last six months they helped me juggle my medicines to find a way to make the prospect feasible (mainly by switching from MMF to Azathioprine and getting the steroids down as low as possible) which wasn't without its problems, but eventually worked. We'd all but convinced ourselves that after everything we'd been through over the last four years in particular, conception probably wasn't going to be straight forward but nature took its course far quicker and more easily than we'd expected, so we both went into shocked disbelief when the pregnancy test indicated positive. After four tests and confirmation from the GP we started to believe it may be true, but were scared of running away with the sheer wonderfulness of the possibility, because we knew matters relating to my health are rarely straight-forward. Sure enough week six into pregnancy the lupus decided to flare. Apparently this happens to approximately 30% of SLE patients, although I understand for many pregnancy also temporarily ‘cures’ symptoms. Things have been controlled and settled to some extent by an increase in steroids and generally I have been doing well. Fortunately, I do not suffer with certain key things that are known to complicate lupus pregnancies, such as sticky blood and so far I’ve been fortunate enough not to have had any kidney involvement. Anyway, regardless of how I am when we got to see the baby at the 12 week scan it certainly looked full of beans!

Managing pregnancy let alone new born babies when you have lupus is a whole new territory for me and is not something that our research explored (let’s be honest the fact that no respondents who were pregnant or with young babies volunteered to take part probably speaks volumes in itself!) so I guess learnings on this topic will be working progress. I have now stopped working entirely for the time being so have more time to dedicate to livingwellwithlups.org and plan more regular postings. So for now it’s a case of ‘so far, so good’, and we are touching an awful lot of wood and keeping fingers and toes crossed at all times.

Taking the ‘ow!’ out of mouth ulcers

Mouth ulcers are a common symptom of lupus and one that for something so small can cause a great deal of misery

The mouth ulcers I get range from painful white spots on my inner lips and gums to large white patches covering the palate of my mouth (as in the picture) or inner cheeks of my mouth. I have tried various products on the market as well as some prescribed, so here are my top tips:

1. I find gel products slide around and don’t stick to the ulcer so opt for liquids, sprays and pellets that stay in place

2. Products I find helpful are:

Ambesol Liquid is an old favourite of mine as it numbs the pain entirely and allows you to eat and talk without pain. The drawback is that it really stings when you apply it, so prepare yourself!

I find Corsodyl Mint Mouthwash helps when it is impossible to brush my teeth properly as it maintains oral hygiene and prevents infection and gum disease, as well as easing some of the soreness. I have also just discovered Corsodyl Spray which is great for zapping ulcers that are lurking in hard to reach corners of the mouth

3. Certain foods should be avoided as the pain is eye-watering – lemons and tomatoes spring mind

4. Although they are a pain to use, when things have been really bad prescribed topical steroids have worked for me

5. Desperate times call for desperate measures: sometimes drinking through a straw, lukewarm soup, ice-cream, yogurt and jelly and avoiding hot drinks can be your only option

If anyone else has any good ideas, I am always on the lookout so let me know.

Troubled Waters

Well it was bound to happen, it is sod’s law. After all this talk of keeping on top of things and having had a very good run, the lupus has paid another notable visit. Mouth ulcers, a rash on my hands and a patchy crimson upper-lip rash (ironically rather like the one I mentioned in my previous entry!), are all some of the visible manifestations of this flare, some of which can be seen in the accompanying picture.

But, like usual, it’s the things that can’t be seen that are really bothering me. Symptom-wise it’s the fuzzy head, aches and pains and the sense of being distant from the real world, and an insatiable fatigue that any amount of sleep or rest can’t touch.

But even worse than these are the emotions and worries that accompany this kind of flare, the kind that mainly gnaw away in the depths of the night: all the ‘what if’s’ and the ‘flashback’ memories of scary lupus scenes gone by, and the disturbing imagined forthcoming outcome scenarios and the feelings of ‘not again’ and ‘why now?’. And then there is the lupus loneliness; the loneliness of not wanting to bother or worry your loved ones again, and knowing that it is impossible for most of those around you to fully ‘get’ how it feels. There is also the feeling that without ever questioning the steadfastness and depth of his absolute love, my husband in spite of himself, likes me less when I’m in the depths of a flare and I don’t blame him, it’s no wonder, because I like me less. When I’m like this I am a nightmare to live with. I am low, snappy and sad and totally preoccupied with being ill – not exactly a bundle of laughs.

Don’t get me wrong. I have sufficiently good self esteem to recognise that all the inner negativity described above is just ‘flare talk’. A deeper and far wiser part of me knows that that this depressive (and probably not entirely accurate) outlook is a symptom of the illness. Moments of weakness and fear are what make us human. Nonetheless, I believe is important to acknowledge and accept such thoughts and feelings ... and then just let them go. This is core to yoga philosophy, something that studying has helped me enormously. Now morning has arrived, the darkness has passed, although the physical symptoms remain, my attitude has changed and inevitably a clearer, more realistic perspective has come. Phew!

So what can we learn from this? The key to being the master of lupus is to be the master of your mind.

The Cool Way to Staying Hot

In the heat it can be hard being a loopy. This year I found a better way of being...

As I said before, my efforts in the past to protect myself from the sun have been somewhat half-hearted. I realise this was probably due to a vain desire to turn from a ‘pasty Londoner’ into a lovely ‘honey-brown babe’ (well you can but dream!) and a misguided belief that the sun didn’t affect my lupus much.

I guess some things you have to learn for yourself - the hard way. Looking back, the reality of too much sun exposure for me has not only been a complete disaster in terms of my vanity (!), but also detrimental to my health. A deep crimson ‘moustache’ rash (visible in one of my pictures) that lasted in excess of six months after the holiday in question (that only disappeared when I was given very serious treatment in hospital when my general condition had become dangerous – potentially all caused by the same holiday), a long lasting brown blotch on my forehead that looked like an expansive country sprawling across a globe, itchy rashes on my body and a gelatinous lump on my eyeball – enough to make you squirm - are all some of the delightfully visible physical signs I have had when I’ve had to too much sun. Not exactly the ‘beach babe’ look then! Other non-visible symptoms include headaches and lupus fatigue.

The entertaining picture at the top is an example of just how unglamorous my attempts to catch a few rays ultimately became. On a holiday in Sardina a few years ago, after too much sun, no hat and no sun umbrella, on a beach with no shade and with a terrible headache Tony ended up lending me his t-shirt, wrapping me in a sarong and using an umbrella to shade my head. As you will, see I ended up more like a beach tramp than a beach babe!

I was therefore rather pleased with the more effective way I managed the sun this year. Firstly, we consciously decided to book our summer holiday (to Umbria in Italy) in late spring to avoid the truly scorching weather – although I have to say it was still hotter than we were expecting. Like most women I still hoped to look nice while I was there and even better when I got back. To address this I did a few things that worked very well.

1. As I often feel a bit ridiculous and decidedly un-‘continental’ under functional oversized hats and sunglasses, this year I put a bit of effort into developing a more stylish hat / sunglasses combo– so while I was protected from the sun I also felt stylish (or at least not like a complete idiot!)

2. AND most importantly I developed a routine that meant I still managed to return from holiday with a nice sun-kissed look! I achieved this by following every morning application of high-factor sun cream with a layer of fake tan. Just as a natural tan does, the fake tan seemed to build up over the time we were away. Although I admit it did require a fair bit of effort, it didn’t seem to matter because we were on holiday and so I had more time and inclination. It meant I returned with a holiday glow that looked as if I’d done hours of dedicated sunbathing without having to go to all the effort (and if the truth be known I’d far rather be snoozing in the shade or reading a good novel or magazine anyway – after all, the sun is so uncomfortable)

3. Another useful thing I did was to take siestas during the day at the same time as the locals to avoid the hottest part of the day and I found beautiful trees to sit under, so I could still enjoy being in the sun without the problems.

I’ve come to rely on a few reliable products that I’ll recommend in case you want to give them a go:
1. Clinique Super City Sunblock SPF 40 – a permanent fixture in my handbag
2. Soltan Mini Spray SPF 50 – I find this great because it’s small enough to carry around and because it’s a spray you can put it on ‘hard-to-reach’ places for yourself (from Boots)
3. A lip balm with sun block – I admit I forgot my lips this year and burnt them (I learnt not to forget eyelids last year, behind the ears the year before!), so have started using Elizabeth Arden’s Eight Hour Cream Lip Protectant Stick SPF 15 that my Mum bought for me which seems pretty good
4. Sunglasses with UK protection (to protect your eyes and avoid the ‘gelatinous’ eye thing)
5. Hats, hats and hats and caps – to go with any outfit – ‘Accessorizes’ has a good selection

Please let me know if there is anything else I should be onto or doing...

(By the way, if your lupus is flaring I’d recommend staying out of the sun entirely if at all possible and keeping yourself as cool as you can. From my experience, even just the heat makes you feel more unwell than ever and I know other loopies have said the same)

Happy Days

It’s been a while, so I thought it was about time I put ‘finger to keyboard’ (a modern twist on ‘pen to paper’). So, what’s been keeping me?

Well it’s been a case of ‘no news is good news’. For the past few months I have been enjoying life in a way that for a long time I thought would never be possible again and so far, I’ve avoided having to pay too higher price health-wise. I’ve been on a fantastic holiday to Italy, progressing with my Yoga Foundation 1 course (that I’ll finish with final retreat in July), thoroughly enjoying Ben and Rachel’s wedding, coordinating building work on our house, keeping up with my voluntary support work and spending great time with Tony. So what’s happened? How has this been possible?

I have talked of lifestyle changes before, but I know it’s not often possible to change everything overnight. I started making small changes long ago when I realised that lupus couldn’t be a) ignored, b) fought or c) ‘willed’ away. With each thing I tried I hoped it would be the key to returning to a healthy life. Individually each thing helped, but I’d still hit upon significant stumbling blocks. And realistically I probably still will because it’s very easy to fall back into a ‘phew, I’m over that now’ mentality as soon as I feel vaguely better, although I know in my heart of hearts (as we all do) that currently lupus cannot be cured, it is always there. But, with proper management it can be contained.

This is the reason for the recent spate of relative good health (ok not perfect but pretty damn good) and consequential happiness I have been enjoying. At the beginning of this year I made a pact with my husband to consciously adhere to all the winning lupus lifestyle lessons we have learnt over the past few years. The incentive is high. We would really like to start a family and the doctors have been working to adapt my medications to make this feasible. Meanwhile it is my job to do all I can to ‘tame’ the lupus, as going into pregnancy mid-flare isn’t likely to make for a happy story (and let’s be honest, when lupus is flaring even the conception part itself doesn’t hold much appeal!). So I’ve been acting on all the things that I know, rather than just knowing them, if you see what I mean. And it seems to have been working.

For example, I have been taking sun protection very seriously this year (unlike in the past where efforts have been half-hearted and underpinned by the desire for a nice tan and the mindset ‘I’m sure it doesn’t affect my lupus that much’) and low and behold, I have avoided the usual downer that follows a holiday. Notably I still had one of my most enjoyable holidays ever and came back looking really healthy. There is a separate blog on this subject to follow as I’ve discovered new products and tips.

Due to the economic recession my work was drying up so I decided to turn this into an opportunity to make more time for my health and reduce stress. I would now describe myself as ‘semi-retired’ – at least for the time being anyway. I do some low stress work for my husband’s business and occasional odds and sods for former colleagues, but nothing that puts me under any great pressure.

I’ve been getting rest and sleep where necessary even during the day; what’s more this is without guilt (a new one for me). I’ve also been keeping up with my yoga and trying to walk regularly for gentle exercise as well as to sticking to prescribed medical routine, blood tests and appointments.

Ok, I’m not pretending I’ve been the perfect angel 100% of the time, but having a strong incentive has made sticking on the lupus ‘straight and narrow’ far easier.

To summarise the key factors that have been key to my good stretch, in case you fancy making a few changes that are likely to help:

• A strong incentive to stick to lupus lifestyle ‘rules’
• Minimised stress
• Rest & proper sleep
• Sun protection
• Yoga and gentle exercise
• Disciplined medical routine