Lean on M.E.

Everyone’s got SOME sort of hobby right? Even if its just eating or picking your nose or summit – it’s one of your favourite things to do, therefore it is a hobby. Bird watching, train spotting, reading, crocheting, eating chicken dippers for instance = hobby.

When you’re spending a fuck tonne of your day indoors you need to be a wee bit imaginative. I can’t do anything manual like crochet, or knitting because my hands don’t really work that way anymore and my brain gets its tits in a twist about following instructions. I used to bake but fat club shat all over that and we’ve already established that I neither want to, nor am able to be one of the great outdoors Valdiree squad. I’d rather punch myself repeatedly in the face than climb a mountain. I do not feel the need to conquer nature… I’m happy just to walk around it, or get in the car.

So, what do you do when your main activity is sat on your lardy arse? Shop…. obvs (more on that later) and also talk to lots and lots of internet weirdo’s like you and “the girls”.

I did tell you I’d get round to dishing the dirt on the “the girls” at some point.

When I was about 8 months pregnant my fanjo began to swell. Now lads, don’t get squeamish, we all know that pregnancy turns your favourite hang out into the ghetto. In my panic I turned to Dr Google and tried to work out why my flaps were the size of elephant ears…. unsurprisingly it told me I was going to die but as I was busy preparing myself for the funeral I clicked on a Mumsnet link, then another… then another and eventually I found myself on the “September bus”. What in the name of the wee fucking man is the September bus I thought? Turns out it was a thread full of women who had shagged at approximately the same time Christiaan and I had (thank you Christmas and New Year) and were all up the duff and set to pop in September-ish.

I started having a read at the pages and PAGES of chat on that thread… now this crowd were a bit more polite that me but I had a feeling it was all a front. On the very last page of the thread the chief gaffer who had set up the page (you Mrs S) asked if a Facebook group would be better…. “YES IT FUCKING WOULD” I shouted. I asked for an invite and 2.5 years later I’m still chatting to that same group of women.

It’s not always harmonious, some of us would quite gladly rattle some of the other members chops, but on the whole we’re a tight knit wee nest of vipers. The support I’ve had from these 99 (sometimes more or less as the tide brings people in and out) strangers has been incredible, and even when I couldn’t be around them at the height of my diagnosis they were in constant contact. I had gifts sent, messages and cards – they let me know every day that I was in their thoughts in some way and when I had my diagnosis and stopped being angry at the world they opened the group back up to me and welcomed me back. I ask them the most ridiculous questions, advice and generally take the piss out of them when I get the chance but I am eternally grateful for every tear, every laugh and every smile I get from their virtual world – they’re more than a hobby, they’re my village and my people.

In among that pool of strangers are a handful of incredibly dedicated gluttons for punishment. These are the ladies who contact me directly most and listen to my whining, my stupid stories and share my love of brightly coloured kids clothes. I won’t use their real names, primarily because they’ve no fucking idea where this blog is going to end up but: Barren Park, Ben Avocado, Hairy Mammleton, Meth Popeman Gordon Core your support means the world to me. Genuinely. Thank you.

The rest will all be getting the arse now, wondering why they don’t have bogus hollywood names and aren’t getting a mention – ladies, you’re all fantastic.

I was thinking about this crowd a lot today, primarily because I read one of the saddest stories I’ve heard in a while and I realised how lucky I am to have so much support through such an isolating, and potentially devastating illness. The passing of Merryn Crofts was publicised widely today on the ME Association’s Facebook page. This brave young girl fought with everything she had to raise awareness of an illness that still struggles to take its place up there with the big hitters. By reading my blog, by understanding the illness and what it can do, and by clicking on her name and reading her story, you are raising awareness. Even if it’s only your own. You are crossing from the unknown world of yuppy flu to the details of an illness you’d probably never have given a second thought.

At some point, when I’m stronger, I’ll be arranging a fund raiser of some description. I have no idea what an immobile over weight sloth like blond can do, but fuck me I’ll find something… she was 21 and it feels wrong. Think of your life at 21 and try and compare it to hers. Think of how her parents felt watching her rot away in that bed while the medical community struggled to help her through ignorance or prejudice. It has to change, and if I can help, I want to.

In Memory of Merryn Crofts age 21 #meawareness

Merryn

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