Briefly explain to a healthy person what is like to live with this illness.
Briefly, now that a challenge, or maybe a blessing. I’ve had a very anxious night with barely any sleep so now I’m super exhausted. I don’t think I’ve got the ability to write for long, even in tiny stages. Anyway here goes.
I’ve always said having ME is like having the flu, with a hangover, after a really long and hard session at the gym the day before. When I see flu I mean FLU, proper flu, not a bad cod, real wouldn’t-move-to-the-end-of-your-bed-if-there-was-a-million-pounds-sat-there flu. When I say hangover I mean the type that makes everything too loud, too bright, makes your head scream and you feel constantly on the verge of throwing up, that kind of hangover. And as for the tough day before at the gym, it’s the day after you totally over did it at the gym, you know when you wake up in the morning and everything screams. Every muscle, every joint, everywhere just hurts. No matter what you do, how you sit, what pain killers you take, it’s still there.
Having ME is like have all of those, all of the time, for always. Some days the flu will be more like a bad cold, some days the hangover will be more like the one that comes from being tipsy instead of wasted and sometimes I will have the after affects of a slightly easier day at the gym. Occasionally, very rarely but still worth a mention I will feel like I have a bad cold, a mild hangover and only a few pulled muscles, AT THE SAME TIME. This is a big deal as these are my best days. But I’m never without something. Some days my metaphorical hangover is worse than my metaphorical flu and my imaginary gym session after effects other days my chronic condition collection mixes it up a bit. But like they can all be milder occasionally they can all be hardcore, full blown at the same time also, these are my worse days, the ones I pass in bed, in the dark, alone because I simply cannot handle noise or interaction.
So yes that’s mostly it, having ME and fibro is like living with the flu, whilst hungover, after running a marathon. But it’s living like that whilst trying to think through cotton wool. Everything is hard to understand and almost impossible to process, never mind with any kind of speed. It’s loosing your words, forgotten important things and people, it’s randomly speaking backwards for no apparent reason. So yes, that’s known as “brain fog” and it means even in your own head you’re not right, like even inside your mind you cannot be the person you used to be.