When life gives you Lyme….

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.

imageSo, 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.

 
image-2-e1459004996956But 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.

imageWhat 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.

Rachel Alban Art

What do you do ‘When Life gives you Lyme?’ I try not to lose all hope.

11 comments

  1. Claire sidwell says:

    Very well explained Rachel thank you xx I too am suffering from Lyme disease. Suspect I may have been bitten 18yrs ago after having weird arthritic symptoms. Bitten and had bullseye rash last year and all hell broke loose. Neurological problems, balance, vertigo, and the brain fog has stopped me from studying at the moment. I say that as I will beat this. The NHS really need to wake up to Lyme disease and the chronic suffering it causes. I wish you well in your journey xx

    • Rachel Alban says:

      I completely agree, Claire, that the NHS needs to take responsibility for suffering that is being caused by its neglect of Lyme patients. I hope we are both able to overcome this disease in spite of everything and return to what we love: studying, painting and everything else life has to offer when one is not in bed! Best of luck and thanks for your comment xx

  2. Gabrielle Speaight says:

    Rachel, Your recent blog is both moving and powerful and you write so lucidly about this life-sapping illness.
    I can identify with so many of your thoughts as my 23 yr old son has had Lyme Disease for over four years now and he has been robbed of his youth – he too was very active and lived life to the full. He has experienced so many false dawns and sometimes loses hope, but he does not give up in his struggle to recover. The exhaustion – both mental and physical, is so debilitating (especially having led such an active life before the tick bite!) He has not seen his friends or any of his family, apart from his parents and siblings, for a few years now as he does not feel well enough to engage in social activities. He does not use Facebook or Twitter and rarely uses his mobile but he has long conversations with us which reveal courage and a wonderful brain. I often wish he could channel his frustrations and creative ideas into painting or sculpture
    Your courage and your art work are equally inspiring and I do hope that you will find
    the energy to keep on painting. I bought some of your flower cards a while ago and
    I have received some lovely comments about them.
    If I have any brainwaves of good places to sell your beautiful cards I will be in touch.
    Gabrielle

    • Rachel Alban says:

      Thanks Gabrielle. I’m so sorry you are watching you son going through this too – I think it’s particularly hard when the lifestyle of the disease runs so counter to the sufferer’s true personality and inclinations. I completely understand you son’s reluctance to use social media and keep in touch with people. I know it’s extremely helpful for some, but personally I find it hard, especially if I start to compare myself to other people. I’m sure he will find an outlet in his own time – I think the expectations of how one is meant to cope with illness can be difficult to live up to. I often feel ashamed that I don’t do more, but I don’t think anyone going through this should feel ashamed of how they manage to deal with it. I’m so glad that my cards have been well received and thank you in advance if you think of anywhere that might be suitable for the Lyme Awareness Cards. All the best to you and your son, Rachel xx

  3. Alan Hutchinson says:

    Sorry to hear some detail of your Lyme story. My son Simon went misdiagnosed for 10-11 years and recently got a diagnosis of Lyme and co infections and so we are at the beginnings of treatment. A silver lining came out of all the illness however, initially on his better days he painted little model soldiers and over the 10-11 years this has developed into him making fantasy creatures from junk and found materials. I am glad you have a talent that you can work on when you feel up to it. Good Luck with your treatment and I hope you start to improve soon.

    • Rachel Alban says:

      I’m so sorry to hear that your son has misdiagnosed for so long. Diagnosis of Lyme is hard, but that’s no excuse for the lack of expertise in the NHS and the insistence of relying on inaccurate testing – I was diagnosed clinically and it was confirmed by a blood microscopy in Germany. I hope Simon’s models and sculptures give Simon a boost on his better days – if nothing else, I find the act of creating something makes me feel that I’ve really existed for that day at least – and I have evidence of it to look back on when I’m feeling worse. Good luck to you too in your Lyme journey – I wish you a plentiful supply of hope and patience, because that’s what I always feel most in need of!

  4. Tricia says:

    Fighting alongside you Rachel, bitten at 20 in Kingston alongside the river Thames, like you very active prior to lyme.

    29 this year, no treatment for 5 years severely neurological. Seeing improvements as just literally trying everything and now doing bee venom therapy after 2.5years of antibiotics, another year of herbals, Cowden and klindghardt protocols, homeopathy, plus metals, parasite, Candida, gut and mold treatment.

    You write beautifully, and if you ever want to reach out and email a friend, my email is filled in the box below if you can access that, or I will PM Louise so you can contact me directly (although I know reading and writing can be strenuous, even on my old “good days” it was tough, but it’s getting better). It would be in strictest confidence, we all need support whilst we’re finding our way and spreading awareness in whichever way we can when we are unable to do almost anything

    Much love,
    And more hope,
    Tricia

  5. Tricia says:

    P.s the lime painting depicts this disease perfectly, succinctly. If you ever make a copy, I’d like one (seriously) preferably signed 🙂

    I could no longer paint, I lost all creative or artistic ability when the Lyme went neurological for me, so I know just how much strength physically and mentally you are using to continue your passion and that shows severe determination and strength <3

    P.s I've subscribed

    • Rachel Alban says:

      Dear Tricia, I’ll be in touch soon if I can find your address (it’ll be somewhere in the admin section of my website!) but in the meantime, thank you so much for your kind message. I’m sorry you too have had your twenties snatched for you – let us hope our thirties treat us more kindly! I admire the way you are open to trying everything – with such inadequate treatment available on the NHS it is hard to know which way to turn. Wishing you all the best, Rachel xx

  6. Richard Brooke-Powell says:

    Heartbreaking , true, inspiring. I wish you strength and the positivity (which you do not lack) to beat this plague .
    Awareness and Hope are all we have at this time. Thank you for this moving contribution.

    • Rachel Alban says:

      Thank you, Richard. I wish my story didn’t resonate for so many people who have gone through similar suffering – you are very right to call it a plague. I wonder how many ‘first-borns’ (and everyone else of course) it has to afflict before the pharaohs of the NHS pay any attention. Best wishes, Rachel.

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