A very long post on balance & pain & beauty

People tell me they enjoy this blog because it gets the balance of ME and non-ME right, how do I manage it? I'm not sure I know. My impulse to write - when I am able - is what has saved me from this illness, even just a couple of sentences. My posts are often short. I constantly have words banging together in my head, I would prefer if they were gently colliding. Still, I could never blog about ME all the time, it would bore the arse off me - remember I've had this since 1983 - but of course I must mention what is important, and my rage and disgust at the non-believers never goes away and intensifies periodically.

But neither can I bear undiluted self-absorption - and you do find it on some ME blogs, ironically those who are less ill tend to be the most solipsistic. You will come across this 'monopolisation of suffering' on non-ME blogs too, I guess it's human nature. Of course, there is a therapy to blogging, and we all construct masks when we blog or FB or tweet - unconsciously or not - but when some people - the least isolated, the most supported - seem constantly unable to see beyond themselves, that depresses me a little.

Unfortunately, those with very severe ME are usually too ill to blog much, they are too busy surviving the day, hoping tomorrow might be slightly less awful. Greenwords is a wonderful example of someone severe blogging, her posts are infrequent, but she does it so bloody well. And she is a dabhand on Twitter. Gardening is her passion, she is mostly unable to do it herself, but she is a 'passive gardener' and I learn stuff from her blog/tweets. (I like blogs where I learn something.) Other (ME) blogs I dip into are Digitalesse (photograpy); Ciara writes gorgeous posts on motherhood and Dr Speedy updates us on all the lunacy with just the right amount of scathing.

There was no blogging when I was very severe, I do wonder what I would have expressed of my illness back then if the internet had been around. Intense chronic symptoms distort your view, it can be hard to think of anything else. I remember I used to write my symptoms down to keep track of them and make bargains with God, whom I've never believed in. I'm no saint but I somehow manage(d) to keep hold of the fact that terrible things - and beautiful things - are going on elsewhere, no matter how much this illness has impacted on me. Like Helen Fleet, my character, I have a sense of absurdity, which no doubt helps me cope. But I can't blog solely about my life when children are being bombed in Lebanon/Gaza, flooded in Pakistan . . . take your pick of the horrors.

Still, some days you just want everything to be good for yourself and that is okay. There are still days my heart could shatter at what I have lost. And those with unremitting, severe ME deserve fucking trophies, they really do. I don't tend to put my worst days and hours up here, I think because a lot of that is in my novel, which is my weapon, and I feel I don't have to fight anymore (though I do, really, we all do).

Life can be extraordinarily painful and extraordinarily beautiful, there is luck and there is bad luck. It is how we respond that makes the pain bearable or unbearable. And how we respond depends on who we are at the core, and also on the support we have. Without support, this illness could very easily undo you.

When I see my wee aunt (who is fifty, she has Down's Syndrome and now dementia) I get the extraordinary pain and beauty at the same time. My heart breaks every time I see her, but when she smiles, it unbreaks and the world lights up. I saw her recently and fed her a miniature Milky Way and helped her drink a small carton of Ribena with a straw. It took over an hour. She is strapped into a wheelchair during the day. I hugged her and kissed her and sang a few verses of the Hokey Cokey, once her favourite song/dance. She can no longer walk or speak or read or write or colour in. I was in a state of total exhaustion for the next few weeks from this visit up north, that scary, jetlagged, all muscles compressed into a tin sensation, clumsy and forgetful, but all that mattered was I'd spent precious time with her.

Even taking the wide and bizarre spectrum of ME into account, if you look around the internet and see just how many claim to have (or have had) ME, I still fear that it is being over-diagnosed in some places, some seem to wear it as a badge, inappropriately. This is the fault of GPs and self-diagnosers who are - understandably - stumbling in the dark because of the nonsense peddled for so long by the Wesselyites. (Yeah, we don't actually know what's wrong with you, let's just call it ME. Now, be a good girl/boy, go and do some star jumps and we will train you not to feel pain.)

With any longterm illness comes much pain and chaos - and moments of beauty. We need balance to cope with it all. I don't always get the balance right in real life, but I hope I can do it on this blog.

*I meant to add this blog before but got distracted, have been tweaking this post for a week, it started as a post about my wee aunt and went in another direction. Holey Vision writes with grace (literally, her dog is called Grace) and humour about life with progressive loss of vision. Her spirit and lack of self-pity are quite something.