I try not to write about Lyme Disease very often on this blog. After all, you came to this site to read about art, not an infectious disease. However, I haven’t been able to post recently because for two months I have again been too unwell to paint. There has been one or two odd hours where I have picked up a paint brush, but as it takes me an hour or two to really start painting fluently, these short sessions where I’ve really not been feeling up to it have resulted in more frustration than worthwhile results! Below are a few of the projects which have been eluding my artistic grasp and will be discussed in future posts, hopefully once they have been rescued.
So, as Lyme Awareness month (May) is all too soon approaching, I thought I would take this opportunity to post about the disease. I had planned to do a new painting for this year’s Lyme Awareness campaign, entitled ‘When Life gives you Lyme’ – a play on that infuriating phrase, ‘when life gives you lemons, make lemonade’. As everyone knows, this mantra exhorts you to make the best of a bad situation and no doubt many people with Lyme have tried to do so, by putting their efforts into campaigning for better awareness, diagnosis and treatment.
But more often, ‘when life gives you Lyme’ you can do nothing at all. Ironically, my barely-started painting is the perfect metaphor for the impotency which Lyme forces on many of its sufferers. Lyme doesn’t stop you from having great intentions and creative ideas, it just makes you physically incapable of executing any of them. Many people manage to overcome or work round various disabilities, and some go so far as to describe themselves as ‘differently abled’ because their disability doesn’t stop them from living the life they want to live, they just have to be creative about how they go about it. For many, Lyme Disease is not like that. It’s more akin to asking someone to work around having a coma. I can get out of bed in a morning, and by the time I have dressed and had breakfast, the illness has overtaken me and I’m back in bed again. Of course, most of the time I force myself to stay up and not ‘give in’ to the reality of the disease, but for all that I am able to do in that state of pain and overwhelming fatigue, I might as well have gone back to bed. Often, I suspect getting up at all is something of a futile exercise in hope and good intentions.
I have been encouraged, in the past, to simply adjust my expectations of life and then I won’t be constantly disappointed – to focus on what I can do. If my only expectations, however, become a life of either being asleep or as good as asleep, then I feel it’s not really legitimate to call them expectations of life. That’s what most people hope for in death. There seems very little about a life like that which resembles living at all.
It is sometimes easier for doctors or onlookers to interpret Lyme Disease as the fault of the sufferer – that in some way it wasn’t the tick bite that made them ill, but rather perhaps their personality or lifestyle. It’s a comfortable way to avoid the truth of the situation: that in the UK there is devastating disease which is easy to catch from a tick bite, which is hard to test for and, if not caught early, is currently hard to treat. Those wishing to ignore these facts may tell some Lyme sufferers that they weren’t active enough before they got ill, and other sufferers that they got ill because they were too active. I usually fall into the latter camp.
It has been nearly six years now since I was bitten by a tick in Oxford and got the most common form of the EM rash, which is a diagnostic sign of the disease. Yet it was missed by at least two GPs and I did not receive a diagnosis or any treatment for another 4.5 years. I hope it wasn’t already too late by then. I hope I don’t have a lifetime of this ahead of me. I hope I don’t have to see my family bankrupted for treatment which the NHS should be providing. But two years into treatment, the episodes of progress I have seen have been outweighed by the otherwise intransigence of the disease.
There is a reason that Lyme Awareness Month is in May – if it’s warm enough for you to be spending time outside comfortably, then it’s warm enough for ticks to be out too. The immature forms of the tick can be as tiny as full stop, but their bite can be just as detrimental as the bloated adults you most often see on hedgehogs or dogs. And yes, dogs and horses can get Lyme – in fact, vets are generally more educated about the disease that most doctors in the UK. Ticks are carried throughout the UK by squirrels, badgers, foxes, deer, rodents, hedgehogs, dogs or even birds. Have you seen any of these animals near where you live? Well, ticks are probably not far behind. Any long grass or vegetation could harbour them, be it in your garden or a park, or in the countryside. You might not only miss the tick itself, but a tick bite can also be overlooked: not all infected bites results in a characteristic rash and sometimes that rash is concealed by body hair or in a hard-to-reach part of the body.
What is your defence? The best defence is awareness: please visit Lyme Disease UK to familiarise yourself with the signs and symptoms of Lyme disease and if there is someone you know who is unware of the disease, send them a Lyme Awareness card this May or forward them this blog or a link to the website above. As far as diagnosis and treatment in the UK is concerned, your defence against Lyme is desperately poor, but this can be changed. Please look out for a support the Lyme Awareness Campaign this May. I have sent this T Shirt summarising my experience of Lyme, in lieu of being able to go to the protests myself.
I am also looking for little local shops who might sell my Lyme Awareness Cards during May. Profits will be going to Vis a Vis Symposiums, and the packs on my website will be discounted from now until the end of May. Do you know anywhere that might sell Lyme Awareness Cards? If so, please send me a message.
What do you do ‘When Life gives you Lyme?’ I try not to lose all hope.