It's hard to explain how delayed fatigue works, but this is the reason why those of us with fibromyalgia and chronic fatigue/ME have a hard time getting disability, why our friends sometimes think that we've somehow recovered from whatever was wrong with us. They see us acting normally, but they miss how we pay for things later. When you are healthy, you perform an activity, you get tired, you rest, you recover, repeat as necessary. I'm no biochemist; I don't know the exact underpinnings of how or why delayed-onset fatigue works. I can give a pretty good guess, but I thought rather than try to explain it, I would just describe for you my week, and that might give you an understanding.
You can, if you are careful and diligent, build up a very small reserve of energy for an event. You also need a bit of luck, because you never know when something will go wrong and take from your reserve. You can't stockpile very much, of course, it's more like building it up to close to what normal feels like, or at least what you think normal feels like. It's been so long since I've felt normal, I can't really tell for sure. On Friday night, due to a medication error, I realized I was out of one of my medications, which also doubled as my sleeping pill. Now, I always keep a backup, but my appointment was Wednesday, and I didn't have quite enough to last that far unless I went down to a half-dose. Needless to say, on a half-dose I wasn't sleeping very well, so I had NO RESERVE when I started off this week. I just wanted to lay this as the base; I was very much on low-ebb, including some nasty side effects of withdrawal including hallucinatory itching and a near seizure on Monday night. My countenance was pale, my hands quivering, and there was the impression of someone with a grave illness just recovered.
It is standard that when I have an appointment, I rest the remainder of the day, and usually by the next day I am recovered. This week, I had both a therapist appointment on Tuesday, and a medication renewal appointment on Wednesday. That, for me, is considered an "event". Under normal circumstances, I would have tried to build up a bit of reserve energy for two back-to-back appointments, because even though I rest after an appointment, I generally am without reserves the day after, so a second day of going out can really drain me, and I don't like to be drained in that manner.
Well, this week, starting without reserve, appointment number one was enough to do me in. But I didn't feel it right away. And, like a recalcitrant child, instead of going right home and resting and trying to build up a reserve like I should have, I decided to go and have a cola with a friend while sitting in a bar, since I was already out. Now, I know that's dumb, for me at least. For a normal person, going to a bar and drinking a soda (I can't drink alcohol) while having a chat and watching Jeopardy and Wheel of Fortune on the big screen doesn't sound very taxing, but for me it's quite the big deal. That's a huge energy drain, and I knew I was going to pay big time once it hit me. But my bartender friend was going out of town, I wanted to see them, and I already knew I was in huge trouble energy-wise and I just wanted to have "one good time" before it hit.
When I got up Wednesday, my legs didn't work. The fatigue hadn't really hit me, except I guess my lower half. Anyone who's ever done running will know what I'm talking about, when I say that moment in your run when suddenly, no matter how much effort you try and put into it, you start moving in slow motion. Your legs just WON'T GO; it feels like you are running through molasses. Well, that's how my Wednesday was. They didn't hurt, or at least, didn't hurt any more than the usual, but they wouldn't move either, and I had some serious walking to do, because after all, I had that important second appointment.
I live four blocks from the metro, and my doctor is another five or six blocks. That's basically a mile of walking in each direction, or close to four half-mile walks each time I have an appointment. When I was well, this was a breeze. It took me 5 minutes to get to the metro, and 15 to get to the doctor after all the street crossings, and there's a nice long metro ride in the middle. After I got sick, it took me 7-10 minutes to get to the metro, and around 20 minutes, sometimes 25 if I'm having a bad day, to get to the doctor. Well, Wednesday was the worst I think my legs have ever been. My front foot refused to go any further than having the heel 3 inches in front of the back foot, at each step. That's two miles I walked, doing granny steps like I had a walker in front of me, in 90 degree weather. I have seen the face of hell. Every two blocks I had to take a 30 second break, just to catch my breath, because walking like that takes much more work than walking normally. And every step, every curb, had to be done one at a time, one foot goes down, the other foot follows, like an old person or someone on crutches. And while I managed to do those steps at a pretty good clip, they were still infinitely tiny, and I had to fight back the tears as everyone passed me on the sidewalk.
I try, I try so hard to be grateful. At least I CAN walk, right? At least I'm under my own power, on my own two feet. But I think I would have mugged someone for an electric scooter on Wednesday, pushed them off and zipped away. Because I'm 35, and dammit I wasn't ready for this, but then I think, who is? Probably not even being 75 makes you ready for granny steps, makes you ready to be old. I have no idea how long it took me to get to the metro, but I can tell you it took me about 45-50 minutes to get from the metro to the doctors. I always leave super early, because it's the day you don't that the subway train breaks down. I don't mind long waits in the office; it gives me time to read on my Kindle, and I take a painkiller before I leave the house anyway, because the subway seats are just as uncomfortable as the chairs in the waiting room. Either way I'm sitting up in a way that hurts. So I made it on time, anyway, but I was so thirsty by the time I got there I thought I was going to drink the water cooler dry. Almost an hour to go a half mile, from the same girl who once ran three miles in 35 minutes on her first (and only) 5K run. Try doing this sometime, try walking a 2-hour mile, can you go this slow? And I'm not even the exception, there are many, many fibro sufferers who have trouble going to the bathroom even, fibromyalgia tightens the connective tissues in and around your joints. Spend a day just doing everything walking heel-to-toe, and see how long everything takes you, how hard everything gets. It's a start, anyway.
When I got home, the fatigue set in. AFTER day two. I guess whatever toxins were in my blood had pooled in my lower legs at first, but finally they just took over my whole body. I barely managed to straighten up the house for the maid to come today, and was able to stay up while she was here. But the rest of the time, I've been asleep. I napped on Wednesday after I got home, and went to bed much earlier than normal. Then I slept until the hour before the maid was to show up, then straightened so she could do the heavy cleaning, then after she left I pretty much took to my bed, for a lovely five hour nap. Now I'm writing this, but I'm truly exhausted. I'll be going back to bed after, and I will most likely sleep the night through and probably on and off through most of tomorrow, and I might nap excessively on Saturday as well. I feel terrible. I feel as tired as I did after rugby practice when I was well, only I've just gotten up after nearly 24 hours of almost continual sleep, and I'm STILL exhausted.
It's theorized that fibro and CFS/ME and certain other illnesses cause mitochondrial failure in the cells, that our cells can't clear the normal toxins that build up from doing routine things. I think the body has ways and means of working, despite being full of these natural toxins, lactic acid and such, otherwise we wouldn't be able to exercise. I think that's why the fatigue is delayed; at first the body responds as if this is everyday, normal toxicity, it just keeps going, thinking that your cells are going to do their job and clear our all the gunk like they should. So we don't feel the fatigue right away. But then, later on, when the chemicals that should have been removed are still floating around, suddenly something in the back of your brain kicks on and goes, hang on a second, we have a serious problem here, maybe we should shut down for repairs, and WHAMMO! you are down for the count. That's my guess anyway. But 90% of all fibro and CFS/ME sufferers have some form of orthostatic intolerance, that's wonky blood pressure in layman's terms, which might also be a cause of fatigue. It certainly doesn't contribute to a feeling of wellness, that's for sure. I can't tell you how often I get dizzy and sick spells and take my blood pressure only to see it's dropped to something abysmal, my lowest recorded so far has been 99/64, for no reason at all, and then less than an hour later it will be back up to something normal, and goes as high as 130/85, all resting rates.
So just because you see someone with fibro or CFS/ME doing normal activities doesn't mean they are well again. I can have a completely normal day, full of completely normal activities, the difference being is in how much I have to pay for those days in the time that comes after. I even attempted to go back to dance class (I used to dance ballet) but I paid for a week after each class. I thought it might work, after all, it was a weekly class and I so desperately wanted to go back, but I have other things in my life that can't be neglected, like the unfortunate doctor appointments, if I didn't, I might just be that crazy. And if you do have a fibro or CFS/ME friend, and they choose to use up their valuable energy spending time with you, don't take that for granted, because even if you aren't doing anything more than watching television together, the gift they are giving is much bigger than you think. They are PAYING for that time. I mean, no need to get all wishy-washy over it either, but just, you know, respect that they paid for it. It may not look like much, but it doesn't come cheap.