I’m making slow progress, and tidal, which is frustrating but normal. The things you did well today may be hard to do tomorrow, and with this condition you learn very quickly that a day or an hour mean nothing, and that the status quo is subject to change at no notice, from one hour to the next you can go from feeling wonderful to awful. The reverse happens more rarely, but it happens – and when it does, watch out, because it usually means that you’ve scraped together enough adrenaline to prop yourself up for a few hours, and THAT is going to cost you, later. It’s almost a case of: the times when you feel particularly good are the very times you need to take things very gently.
Managing this condition isn’t about whether you feel up to doing something. It’s about watching the trends.
After four years of being largely trapped at home with this, the healthy people in my life still don’t quite get that “I feel fine now” doesn’t mean “this means I can do things”, nor does it mean “I will still feel great at 2pm, when we have arranged to meet” (very often by then I will have run out of adrenaline and crashed). Having said that, I am very pushy with myself when I have arranged to see someone, because I generally don’t arrange to see people at all, unless I really think I’ll be able to make it. Consequently I spend most of my life alone in this house. So – you bet – when I’ve arranged some human company for a couple of hours, come hell or high water, if I have enough orthostatic pressure to stand, I will be there.
The problem – with all these fatigue conditions – very often isn’t getting there. You have to be in a truly dreadful state to not be able to shuffle onto a train.
The problem is what happens afterwards. The cost, and the duration of that cost.
Between doing something and the effects of doing something, I normally have about a 1-3 day gap. Three days is when normal activity – meeting someone for a tea, going for a walk, for instance – will hit me. (If I’ve been daft enough to go out for a drink, or carry something – both of which are like hitting your metabolism with a sledgehammer until it stops making noises any more and just lies there – I will feel the effects immediately, the next day.) But three days is the normal point where the effects of light activity start making themselves known. Go out on Monday, and it will start to have an effect on Wednesday/Thursday.
So you do something, and the next day you wake up a bit cautious. How do I feel? Oh wait! I feel ok! You spring from your bed, and you say “yes” to whatever someone invites you to that evening. I’m not talking about drinks. Let’s assume none of this involves booze. “Oh hey!” you announce, “I went out last night and I feel great! Sure, I can do dinner tonight.”
Wednesday rolls around and you’re still feeling ok – a bit tired around the edges, but not incapacitated. Someone wants to come ’round to see you, so you say “Yeah! Bring it.” And everything seems a bit grey, a bit leaden, but not badly. It’s perfectly possible for you to do stuff and see people.
And then Thursday comes.
If you had rested on Tuesday and Wednesday, you’d still feel walloped on Thursday, because you did something on Monday. Monday’s little trip out for dinner would probably cost you Thursday and Friday, mayyyybe Saturday. But oh noooo. You were so excited about feeling alrightish, that you also went out on Tuesday and Wednesday. So now you’re going to be laid up for a fortnight.
It is very hard to understand the lag oneself, much less explain it to anyone else. Managing it is an artform. It took me a long time and some ferociously detailed diarising to work it out, but having done so, I discovered that the 2-3 day lag is a fairy well known phenomenon with energy production / immuneb0rk conditions. It is this that makes GET (Graded Exercise Therapy) a travesty for many people. The doctors tell you to “do what you feel you can”. But quite often you feel you can do all sorts. And you can. The after-effects of it kick your backside half a week later, too late for you to connect the activity directly with the symptoms.
The only way to establish what you can do without making yourself ill is to write down everything you do. Your mileage may vary, but I can do one, maximum two, gentle things a week, spaced out, on a very, very good week. My norm is more like one or two things a month.
So if you’re new to ME/Fibro/other conditions on this axis, my advice is: write down everything you do that requires you to be upright. Write down how long you spend interacting with other people (conversation is completely exhausting). Write down anything that causes you to use your big muscles – walking, squatting down for something etc (because the bigger the muscle you’re using, the harder the activity will hit you). And look at the trends. Start to learn to surf those trends, rather than relying on how you feel at any given minute, and your ability to avoid relapse will slowly improve.