placebos and quackery

ME dominates my life. It impacts on every decision I make, or whether I am able to make a decision at all. If I rest now, can I do that later? Will I be able to get a seat? Will I have to talk to people? It’s been a long time since I’ve actually read a newspaper, rather than just looking at the pictures.

I am constantly fatigued, my brain feels like mush. I have regular muscular pain, sore throat, sore head. I have a walking stick. I potter along, but some days even turning in the bed is a challenge. When opening both eyes is too much to expect, I’ll not be getting up any time soon.

ME dominates all our lives- my children think nothing of a parent in bed when they come home from school, or having to make sure I’m awake before they go. Spurs Fan does most of the supermarket shopping because I can’t think, or process, or cope with crowds of people.

I keep wanting us to get a second car, but really, driving exhausts me so much that we needn’t bother our heads. Bundles of important looking post can sit about unopened for too long while I can’t begin to imagine how to deal with the possible contents. I’m always baffled by children needing to eat, or even more grubby clothes. Did I not put on a wash yesterday? Last week I genuinely couldn’t tell whether the kettle was switched on or not (think of all the clues- noise, light, location of switch. No, no idea) and simply shrugged and left it for another while.

Every morning, along with the anti mad tablets, I down a handful of food supplements. Omega this, Vitamin that, co enzyme the other. I do feel that these help a little. If I’m fooling myself that’s grand. I’ve tried plenty of the ‘energising’, ‘vitalising’ products out there and know that most have no impact on me whatsoever, so I’ll stick with those that haven’t disappointed me yet.

I’ll try things if there’s a possibility they’ll help me feel better. I suppose I’m vulnerable, but when there are no ‘medical’ treatments available, it seems like anything is worth a go. I’m not going to pay thousands of pounds for mystery interventions, but CBT, pacing and resting haven’t brought me back to myself either. I don’t expect to ever have the level of energy I used to have, but I’d like to less debilitated.

I met someone at a conference who uses an ME ‘remedy’. He’s back at work, his demanding work. He drives hundreds of miles a week, takes exercise and is still coherent enough to spend time with his family. Had he been at a stand, selling a ‘cure’ I’d have ignored him. As it was, we were in the food queue and got to chatting about all sorts before he mentioned his own rare disease, ‘best described as a bit like ME’. I wasn’t wearing an ME label. I don’t think my health condition is displayed in a neon sign over my head. I wasn’t using the stick that day. He couldn’t have known to ‘target’ me. He’s worked with some of my colleagues, and seems to be a genuine chap. I took the decision to try it out. (Stop laughing at me! All my decisions are made through and because of my ME addled mind.)

So, a month later, I’ve remembered to get some of the ‘remedy’. It could be a huge con. I could easily be being fooled out of the £7.50 for a sample pack. I’m trying not to be too hopeful, but I’ll let you know how I get on.

I’d so love to be able to think again.

image from The Quack Doctor