Myalgic Encephalomyelitis, or M.E., often referred to as Chronic Fatigue Syndrome in the US, or considered to be a similar illness, has a very long list of recognizable symptoms, though some vary from person to person and even from time to time. Some symptoms are so odd, and so subtle, it makes it hard for someone to figure out what they are suffering from. Symptoms can be hard to explain to others, or for others to even imagine. Even doctors may not be fully aware of what these things feel like, though they are listed briefly in many papers about the illness.
I was diagnosed with this, myself, after having it for a major part of my life, and would like to describe what it’s like in some of those subtle aspects. Difficulty standing is one of the major diagnostic symptoms, and many reasons are proposed for this, as well as tests.
People with M.E., the preferred name over CFS, because it is the actual clinical term rather than a label that downplays the actual severity and complexity of the illness, may have trouble even understanding why they aren’t able to stand very long at times. There can be feelings of weakness, shakiness, heat, overwhelming desire to sit down or lie down, dizziness, fear of not being able to stand, and progressive worsening of symptoms such as an acidic pain in the muscles, and a creeping paralysis.
So, as much as you can manage to walk, sit, or lie down, even dance or play with an M.E. sufferer, rather than stand, your relationship will improve. And don’t ask him to get a job in an industry in which he’d be standing all day. Pay attention to whether he seems to be starting to get week, and start walking with him. You’ll notice he may often leans on things, holds onto things, when standing. He may even do it in a way that looks stylish and hip, trying to hide what he’s doing. But now, you’ll know.
If he’s doing something while standing, like washing dishes, especially if he can lean on the counter, move around a lot, he may be OK, but if he has to stand there holding a heavy dish in his hands for long, while you interrupt his activity, he may have to sit down and rest. If something requires him to stand there a long time, he may drop the dish, and sink to the floor.
So, if you are telling long stories to someone with M.E. who is standing there, and he looks fidgety, uncomfortable, ready for your story to end, pale, casting about for a place to sit, don’t take it personally that your story isn’t interesting. He’s doing his best to concentrate and be polite, but every second can grow more difficult.
If you are kissing or hugging someone standing, don’t take it personally either if he doesn’t let it last as long as you’d like, going into deep passionate romantic moments, because distraction by standing makes that form of affection far less intimate and satisfying that doing the same thing in a different position.
If an M.E. sufferer is walking past, and you want to ask him something, walk with him, rather than stopping him. He may look fine walking quickly past, and start to fade suddenly the minute he has to stop and stand. He may not seem to give you enough time to thoroughly get your idea across otherwise. And if he is affected with memory issues, he may have more trouble remembering the conversation. His words may come out backwards.
If he has to continue standing for long, he may get more emotional, even start to cry, or become faint. But, a different day, he may be able to stand relatively easily. It can depend on how much water he drinks, he hot the weather is, how much exercise he’s gotten lately, as almost any amount can sometimes be too much, if he’s eaten enough, if he’s slept enough, and if he’s under emotional stress.
He may be able to stand well, until someone gives him a dirty look or says something irrational, and suddenly, he’ll have to sit down. He may even have to crumple to the floor, even lie down where he is, and be unable to move. This may seem like histrionics, but it’s simply understandable effects of so called Chronic Fatigue Syndrome.
Once he goes down, he’s probably stood as long as he can, which in itself is exercise, and stress. So his illness can proceed by first starting with shaking in the legs, then other parts of his body, though the shaking may not be visible. His muscle weakness may even go to his face, and he can’t talk. He may not be able to do anything at all for minutes, hours, or days.
If you adjust the temperature if possible, give him something to eat, possibly favoring carbs, which may require putting it in his mouth, some water, which may require using a straw, don’t expect him to talk, which even if he might wear him out, especially if it requires answering difficult questions. Leave him alone if need be, be kind to him and understanding, maybe even joke about his condition, and provide help getting up and walking when he’s ready to move elsewhere, most likely, to lie down again. Let him express his emotions if he’s stressed, see if any newly cramped muscles need massage, and get used to it.
So, when he says it’s hard to stand any longer, take him seriously. He’s not just a little tired, or lazy, pampering himself. He means it.
http://aboutmecfs.org/Rsrch/OISource.aspx gives some specifics.