I’ve written variations on this post over the past couple of years, but it’s always worth repeating for new visitors to my blog.
None of us want to be sick. I’ve lost virtually my entire adult life to illness and it’s not a path I would ever have chosen. I was bedridden from 26-36 at a time when my healthy friends were marrying, having children and developing careers. I’m now 48 and I still spend 17 hours of every day in bed. I still have no career, no partner of any description let alone a husband, live in increasing poverty and the simple tasks of every day living are a constant struggle. It’s not much fun.
But in many ways I’m one of the lucky ones. I developed ME in 1996 and it only took me 6 years to realize that:
- There is no cure for ME and
- I would be sick, to varying degrees, forever.
So when I was diagnosed with both EDS and MCAD, neither of which are curable or particularly well treatable either, it wasn’t that much of a big deal.
I have friends who, 20 years on, still can’t come to terms with the fact they are chronically ill with a disease (or diseases) for which there is no cure or really effective treatment. I can’t image how stressful that must be. To search for decades for something which doesn’t exist. To not be able to find peace with your situation. To constantly be longing for a non-existent future and, by the very nature of that, not living in the present.
That’s not to say you should give up trying things which might help. One of my friends was bedridden with ME for 15 years before discovering that low dose Naltrexone helped her enormously and she now lives on her own with the help of Carers. But I look at posts on the ME Association’s Facebook page from newly diagnosed people asking if L-glutamine will stop their pain, or if Lymphatic drainage will cure them and I want to scream “OF COURSE IT WON’T YOU NUMPTY. IF IT DID NONE OF THE REST OF US WOULD BE SICK!”. I don’t though, cos they need to come to terms with the fact there is no cure or effective treatment in their own time and in their own way. It’s really tempting though!
In America in particular, where money buys you anything, my sick friends are often taking 2 dozen pills and potions a day and trying really weird and wacky treatments like hyperbaric oxygen and I just watch the crazyness with an aching heart. I have friends who tried all that shit 20 years ago and, spoiler alert, they’re still sick and financially destitute to boot. That would be because ME isn’t a curable disease, particularly if it’s complicated by other diseases as it so often seems to be.
I’m now going to get comments from people who know people who were really ill and are now ‘cured’. This is why an accurate diagnosis is crucial. There is no diagnostic test for ME and because of that people get diagnosed with it when they actually have a variety of other diseases. They then try a gluten-free diet and, voila!, they’re all better. The fact they obviously didn’t have ME in the first place never crosses their mind – they have the cure for ME and are determined to preach it to the world. They annoy the shit out of me. And don’t get me started on people who are cured by eating medjool dates or wheelbarrow loads of kale because they annoy me even more. Complex neuro-immune diseases are not cured by eating an anti-inflammatory diet any more than they would be cured by 3 pints of a lager and a packet of crisps. The very idea that diet cures disease is so bonkers I have no clue why the myth still perpetuates. Actually I do know. It’s born through desperation and I can understand that, if not embrace it.
I know some people with EDS who have been helped tremendously by physiotherapy or prolotherapy and I’m delighted for them. I’ll be interested to see how that pans out when they’re 50 and menopausal though – I didn’t sublux a joint til I was 45 and my hormones did a runner.
In respect to Mast Call Activation Disorder the one thing reading Dr Afrin’s book showed me is that none of his patients were ‘cured’. He helped some and didn’t help others no matter how many drugs he threw at them. When you don’t know what causes a disease it stands to reason you really don’t know how to treat it, let alone beat it.
Nothing I say, however, will stop some people from chasing the dream of a cure. In their hearts they know it’s futile but it’s become their reason for being. Every last ounce of their precious energy each and every day will be spent on 2 dozen forums excitedly chatting to other people trying the same wacky, and pointless, treatments as them ignoring the fact there are no ‘cured’ people on the forum, or anywhere else come to that. Chasing the cure gives them a goal, a purpose for the day when they have lost their sense of identity and reason for existing in the world. I get it. Truly I do.
None of us wanted this life. But it is what it is and it’s still possible to find purpose, meaning and……dare I say it……joy in amongst the chaos and uncertainty. For me that’s found in nature, my dog, my photography, helping my Church and my community as a volunteer from my bed, looking in on my 86 yr old next door neighbour who’s just lost her husband, blogging and hopefully helping you all wherever in the world you might be. Focusing too much on our limitations, our pain, our suffering is unhealthy and we’re already sick enough.
We have to find a new way in this world we didn’t want or choose. Does that mean I spend my days in a happy-clappy-zen-filled haze? Don’t be stupid. I get fed up, depressed, angry, frustrated, tearful, resentful, suicidal and spend a large part of every day bored out of my skull. But then I did all that in my healthy life too – I had heartache, depression, grief, friendships which disintegrated, cheating boyfriends, money worries, time pressures and trust me when I say that doing the filing hardly filled me with job satisfaction. It wasn’t all rose-tinted and fabulous, no-one’s life is.
“With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.”
Max Ehrmann, ‘Desiderata’