Bad timing, but I feel we’d have the same amount of coverage whether our government had changed or remained the same.
Despite looking through the news on Yahoo, there’s no mention of the Day, although Burglars’ Diets were discussed. Madness! We deserve a mention, and we deserve a mention without use of the term ‘Yuppie Flu’. We deserve to be taken seriously, instead of a condition that has destroyed lives constantly being treated in a flippant manner, due to ignorance (and I don’t mean that in a horrible way). I know that I, and many other sufferers, feel neglected. Little research is being undertaken, little funding is given our way and, it seems, that the ME/CFS charities out there are doing us a disservice by not publicising days such as today. Surely if anyone should be standing up for us, it should be the charities!
Back to flippancy: I follow @Jason_Manford on Twitter, and he made an off-the-cuff comment asking what that illness was where people were always tired, because he thought he had it. One of his followers replied with the comment ‘lazyitis’. That tends to be the unspoken opinion about us, that we are lazy. I know a LOT of ME/CFS sufferers and none of them lazy. Imagine feeling tired, exhausted, lethargic with aching joints, headaches, muscle pain, and still trying to do what everyone expects of you. Imagine the strain of trying to appear ‘normal’ on the rare occasions that you feel able to socialise, and knowing that you will pay for the effort you make, in terms of not being able to function properly, but not knowing how long that will last. Imagine feeling so fatigued that holding a conversation or even sitting up is difficult. It’s not a joke or like being ‘a bit tired’, is it? That said, I do have a sense of humour and can laugh at myself (Steve Coogan even mentioned ME/CFS in his Alan Partridge show, and it was funny). If I couldn’t see humour in my situation, I would’ve gone insane by now!
Personally, I had a pretty good life in between relapses. I’ve had some good careers (trainee biomedical scientist, administrator, local government, trainee Counsellor – gone), some great hobbies (kickboxing, gym, socialising – gone), some great friends (or so I thought – gone), an income (gone) and fun (still try and have fun, but it no longer involves the activities I used to enjoy). You could not call me lazy (although you could, and I’d probably be too knackered to do anything about it!)
It’s important for sufferers to remember that a diagnosis of ME/CFS is not the end of life, just life as you know it. You are as valuable as you were before, but you need to adapt to the person you are with ME, rather than hanging on to who you were. I’ve done some pretty amazing stuff that I probably wouldn’t have done when I was well and I’ve met some amazing, inspiring people. I’ve seen the worst in people, but I’ve also seen the best. I still hope I’ll get better, but I’ll still get on with things as they are and will cherish every single ‘good day’ or even ‘good hour’ that I have.