Monday, 8 December 2008

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

  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

  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.

Thursday, 4 December 2008

Accepting a changing story

I have moved from getting by and surviving with lupus, to getting on and thriving - looking back I find out why ...

You may have noticed that so far I have not written much on this blog about my own particular lupus ‘story’.  The reason I raise it is because I have been asked by others who are helping me with Living Well with Lupus, why this is. They reckon that it would be a good idea to include my story because it would firmly show Living Well with Lupus is rooted in personal and real human life, which is very much the intention. Having thought about it, I agree and I do intend to post something at the beginning of next year with the aim of launching a ‘Loopy Stories’ section on this blog where different ‘loopies’ will share their stories, thoughts and tips but this got me thinking, ‘why  hadn’t I done it spontaneously?’ and the answer was illuminating ...

The first and most obvious reason is that I am really conscious that I would never want the whole Living Well with Lupus thing to be about me as a kind of Daisy Seale-Barnes, ‘me-me-me’ ego showcase’. I want it to be for and about all ‘loopies’, their supporters and most especially for the ‘loopies’ who directly helped us with our research, who also inadvertently helped me personally by being so inspiring at a time I felt I was living on a petrifying lupus rollercoaster. They showed me I was not the only one to be going through this and I was not the only one looking for answers.

The next reason is a little more complicated to explain, but when I thought about it I realised how important it was because in this explanation I was able to identify the key to what turned the situation around for me and made me able to cope much better and live more happily with lupus than I had ever been able to before.

The fact is I already wrote my ‘story’ in February 2007 for St Thomas’ Lupus Trust website (you can find it at and for some reason I kind of felt ‘bound’ to it which made me reluctant. This was because whilst the events of the story remain fact (although they have developed somewhat since then) I no longer feel comfortable with the underlying attitude that comes through. I didn’t want to use that version of ‘Daisy’s Story’, because I no longer see it as an accurate reflection of how I feel today.  The ‘me’ that wrote that story then, is not  the ‘me’ of now and the attitude of the old ‘younger me’ doesn’t reflect the message I want Living Well with Lupus to promote and I suppose my new more enlightened self feels a mixture of embarrassment and pity for the me of that time. I was in a far worse place than I realised.

In fact having just read it again, I realise that there is just one sentence that particularly jars. It is when I say that “I will keep fighting back, brushing [lupus] aside whenever possible” but I also shy away from some of the other ‘defiant’ language of battle I used, such as when I talk about “winning” as if there were some kind of ‘competition’ between me and lupus.

I must confess in the early days after my diagnosis, before my symptoms became so grave and long before I wrote ‘Daisy’s Story’ in February 2007, I was under the impression that my strong will and stubborn nature would mean lupus would never become a major problem for me. Although I made a few token life ‘tweaks’ to address it, I resolved to carry on as per normal, but I firmly held on to what I now realise was a slightly arrogant and very naive mindset. If I am honest, I thought lupus only ‘got to’ those with a weak will and was relished by ‘moaners’ as it gave them fodder and focus for their negativity. Thankfully by the time I wrote my story I had been humbled from this conceited attitude and had moved on a long way, but I still had a way to go.

With the passage of time and events that have occurred since then I have learnt much more and am now living a lot easier as a result. What has changed is that I finally learnt that it is futile to try and ‘beat’ lupus by denying, rejecting and battling with it because, like it or not, it is in my life.  I  learned the hard way. After every flare-up I'd try  to carry on as if nothing had happened, as if lupus  didn’t exist until eventually I realised that this approach only ‘enrages’ the lupus until eventually it flares-up in anger - sometimes sooner, sometimes later.Since this finally sunk in things have been much better.

In my favourite little book Don’t Sweat the Small Stuff, Richard Carson suggests that we open ourselves to “’what is’ instead of insisting that life be a certain way”, and that by “surrendering to the truth” we gain a deeper perspective and enjoy greater peace of mind. I think it was in this vein, that by accepting that ‘it is the way it is’ when it comes to my lupus, that these days I get on far better.

Nowadays I adopt a softer more malleable attitude and live around it.  The way I see it: rigid things break and smash into lots of pieces, soft things mould and stay in one piece. With lupus it is necessary to be flexible and to develop patience in abundance!

It is very important to say that this does not mean I allow it to stop me doing what I want to do, or make  a bigger deal of it than it needs to be; quite the contrary. Funnily enough Tony and I were talking about this the other night, how after the events of the last few years in many ways we are now living life in a far more desirable and enjoyable way than we did before! Because we have to give so much more thought to what is important to us individually and as a couple, we have really established priorities. Once priorities have been identified  it is possible to move forward. In our research we described the steps as »Stop »Think »Plan. Admittedly, certain trade-offs and compromises have to be made, but the truth is  I now do more of the things I want to do, spend more time with people I want to spend time with, eat the way I want to eat, work in a way I like to work than I ever did before, and I am much better at saying ‘no’, because I am clear about my boundaries.

It seems we have developed a new appreciation of life and have become acutely aware of how valuable every healthy moment is. Obviously priorities change and plans shift accordingly. When  lupus does decide to make an appearance, we accept it and deal with it in a calm and pragmatic way. Perhaps unsurprisingly the lupus seems to have mellowed too. By recent standards, my health has been much better.

All in all, I am looking forward to retelling my story in January, because now that I have accepted that lupus is one aspect of my life it has become a happier and more fulfilling story to tell.


On my Soapbox

Hospital parking charges are adding insult to injury

Since the beginning of last week I have had to be in and out of my local hospital more frequently than usual due to a dramatic drop in my neutrophils and white blood count, which are now at an unsafe level. It is perhaps because I am now essentially in ‘quarantine’ and feel a bit like a caged animal that I have had time to brood on the issue of hospital parking fees.

Before every hospital visit, I have to scramble around to make sure I have enough change in my purse or go to the cash point and get a note to turn into change for the machine: hassle, time, stress.

As I am never entirely sure how long I am going to be, I always end up paying more parking fees rather than less to cover my back. The fine for not paying or underpaying is big and clamping is in operation. The machine gobbles the coins greedily. It is difficult to know how much money to put in because it is hard to guess how long the visit will take, sometimes there are delays, sometimes I am sent for tests, or to the hospital pharmacy all of which take extra time, but sometimes I am ‘in and out’ like a shot. I never know.

It seems that the system is designed to get as much money from you as it can. It costs £2 an hour. The other day to be on the safe side I estimated I would be an hour and half, so I put in £2.50. The ticket the machine produced, showed just one hour! Apparently, you have to pay £4.00 for one to two hours and there is nothing in between!

This cost and stress is nothing compared to what my family have had to go through during times I have been an in-patient, when they have spent hours and days at my bedside. Anguish and anxiety don’t exempt you from parking fines. There was an emergency situation when there were no parking spaces so we abandoned the car in a residential spot with a note explaining the predicament. I ended up falling unconscious in A&E and my poor mum who was with me in great distress, later discovered she had given a parking ticket to add to her woes. My husband also got a parking fine because he was late back to top-up his fees after another traumatic night with me in a desperate state. He got small satisfaction by calmly telling the warden who was issuing the ticket about the state he had left me in and inviting him to seriously consider what he had just done and how he would feel if it was his partner, then went on to wish him a good night’s sleep. OK, it is probably a case of ‘shooting the messenger’ but I think it made Tony feel a bit better at the time and hopefully encouraged the warden to think about compassion.

I use my experiences to illustrate the point, all the time knowing that this affects everyone. Most ‘loopies’ and their families are likely to have had similar problems and spent a small fortune on hospital parking – in fact anyone with any kind of chronic illness or ongoing health problem is in the same boat. All in all, it costs a fortune not to mention extra stress and hassle at a time people need it least!

Thankfully both Wales and Scotland have made the decision to scrap hospital parking charges, so it seems that this madness is now confined to England (and potentially Northern Ireland who I think are still in the process of reviewing it). And I thought we were supposed to be a ‘United Kingdom’?!

Anyway, in the spirit of the ‘proactivity’ and ‘assertiveness’ of a ‘loopy’ choosing the Living Well with Lupus path (and because I am climbing the walls stuck at home in isolation!), I Googled ‘hospital parking charges petition’ and found the following, and I for one am going to add my name: