This is a concept I have developed myself, and so far I haven’t come across it in any leaflet, book or website. I don’t know if that means it’s something unique to me and my syndrome, or if it isn’t medical, or I just haven’t read enough yet!
The idea is this: I have three states of being, quite distinct from each other.
- Well. In this state I can live a ‘normal’ life. I don’t have to monitor how much I do, and if I do get tired or achy it’s the natural result of having worked at something physical all day. E.g. gardening. These periods of wellness tend to be during the months when it’s warmer and sunnier. I’m less likely to get (ordinary) ill, and if I do suffer physical, emotional or mental stresses it’s less likely to develop into an ME/CFS episode. (If it does it’s often brief – days or a couple of weeks) Most importantly, I feel well and like myself.
- Transitional or ‘not quite right‘. This is usually when I’m about to go into an episode or when I’m recovering from one, but not always. I have to be careful of how much I do, stay well away from anyone who’s ill unless I want to get it, and I feel off/wrong/not quite right.
- ME/CFS episode. I get the full range of symptoms provided by my own personal syndrome. These episodes can last from a week to several months, and there’s nothing to do but wait it out.
Surprisingly (or maybe not when you think about it) I find that the worst state by far is transitional. When I’m in the midst of an episode I’m already at my worst and usually so ‘not present’ that nothing much makes an impact on me. When I’m well the ME/CFS seems so distant it’s hard to remember how bad it gets. But when I just feel a bit off or start recovering from an episode, that’s when I get the most emotional upheaval. (upset, hopeful, fearful, despondent, frustrated. . .) My recovery’s are often slow and lengthy. I can think about doing things and want to do things but have to put restrictions on myself, then if I do too much and suffer a relapse or exacerbation. . . It’s harder than just being ill.
Is this something other people experience? If so I’d be interested to hear from you, as well as which you find harder: being ill, recovering, being well. . . Also when you’re well – or as well as you get – do you remember clearly how bad you can be at your worst or are you like me and the memory of it gets distant and dim?