The title is a line from a Take That song I was listening to yesterday. It rather resonates with me at the moment.
I had an absolutely horrific day yesterday. I was in bed in agony all morning and feeling too ill to sit up, eventually decided to go downstairs to see my grandparents who were visiting at 4:30pm because I was lonely and they'd already been here a while and I felt like I ought to say hello to everyone, but then I curled up on a beanbag and rested with my eyes closed anyway, so I still wasn't really 'there'. By 8:50pm I was in tears because I felt so ill and was in so much pain so retreated back to bed.
Not exactly a successful or enjoyable day!
In Take That's words: How did it come to this?
How did I end up severely affected?
I've always read about cases of severe ME in absolute horror. Now that's pretty much me. I'm the girl lying in bed most of the time, lying on the sofa most of the rest of the time, rarely able to get up before midday, only sometimes able to leave the house (and even then it's on a mobility scooter), in unmanageable amounts of pain, on a ridiculous amount of medication. Some elements of this have only been true for me for a relatively short time so far, and *hopefully* I will be lucky enough to get back to my previous level of functioning quite quickly. It's truly awful to think that this is some people's reality for literally decades.
I really am struggling/did struggle to cope with the severity of illness I experienced yesterday even just for a day, although that's partly because I've had weeks now of being really, really unwell and it wears you down. But just the actual severity of the pain and the constant ill feeling are absolutely overwhelming.
This relapse started in earnest just over 5 weeks ago, although I'd already been really struggling to cope for a week before that. Since then I've only had a week and a half of relative respite, during which I even managed to attend Uni part-time. I was having to use my mobility scooter even to get relatively small distances inside due to mobility difficulties, was needing a lot of rest and was having difficulty managing my pain at times but was feeling comparatively ok, although admittedly rough and going downhill. But other than then it's been horrendous.
I never dreamt I'd end up in this state, even as things slowly (or sometimes quickly) progressed. I assumed I would improve before my next relapse, would have got some weight on and my mobility would have improved to some extent. Then it would have been less drastic and less terrifying. I would've had somewhere familiar to drop down to.
It wasn't to be. This is something else.
I just never thought it would be like this. In the back of my mind I knew it was a possibility because I've obviously read about people with severe ME in the state I'm in now, and- worryingly- worse. There's no real treatment for ME, doctors can't really give us hope, and often struggle to even make us comfortable. They're more reticent to pump us full of symptom-relieving drugs than they would be with, for example, a cancer patient, because there's less understanding about what's going on and ME/CFS patients are also quite sensitive to a lot of drugs, so there has to be a degree of caution. I am lucky to have a number of medications that do help, but only to a degree, and I have doctors who are willing to try things with me and play around with dosages. None of my doctors can prevent me suffering when things get this bad though unfortunately (particularly as I am away from my regular doctors at the moment and wouldn't be able to leave the house to access treatment most days at the moment anyway..).
Fingers crossed I get to sleep soon and today is a much, much better day!! My heart goes out to those that have been severely and very severely affected by ME long-term; respect and gentle hugs are being sent in your direction!