Okay, lets try this post again, now that my brain is slightly less like a marshmallow:
I know I haven’t finished the “week” yet, but (ironically) I’m not up to writing that much right now. I’d written ahead to Friday before the Neuro appt, but the Saturday one is untouched as of yet. Hands and head don’t have enough energy between them to manage what I want to say. I will put it up eventually though; it might not be ME awareness week anymore, but ME is still there :(
So – awareness. I hope anyone that’s read even a single post has got the idea of what it’s like to live with this disease. It’s comparable to cancer or AIDS; in some cases it’s worse. And it isn’t rare. Approximately 1 in 250 people will get it. Right now, it’s estimated that there are around 250,000 sufferers in the UK – 10% of them are children. 20% are lucky; they’ll get better. The younger you are, the faster you’re diagnosed, the more you rest – these all contribute to being able to recover. Another 20% will deteriorate, eventually dying of malnutrition or organ failure. The remaining 60% never recover, they just learn to live with it, for their significantly-shortened lifespan (on average, we’ll die 20 years early). It’s not a great prognosis.
What’s worse, is most doctors haven’t heard of it, or “don’t believe” in it. Patients are usually told to think positively and exercise: the first does nothing, the second could kill them. Those that do “believe” often misdiagnose patients: thousands upon thousands suffering endlessly with a treatable or even curable illness, because they were never tested properly.
For ME, there’s no treatment. There’s no cure. There’s barely any scientific research or funding.
I’ve been kinda overwhelmed by the responses to what I’ve written so far. I didn’t realise beforehand how little people knew about how ill I was – I guess it shows how little awareness there is. Anyway, thank you to everyone who has messaged me and especially those wanting to visit! ME is a lonely illness to have, I really do appreciate all the time I have with people.
I wanted to raise awareness in general, about how serious a disease it is, and how it’s a real, physical and tormenting thing – it’s not people being lazy, or feeling a wee bit tired. I know I haven’t covered half of the symptoms, but I’m so, so glad that this has impacted people to understand what it’s like to be living with. Unexpectedly, God’s been using it to raise awareness among people we know of how we have to live now, and how much help we need. So, yay! I didn’t expect to get so many views or so much feedback. I’m really happy about this week and what I’ve managed to do – all lying down in bed, crazy! Thank you God.
Oh, for those who have mentioned their love of Tibby, he has a photo/video blog at http://lordtiberius.blog.com