What people don't understand about "no excess physical activity/exercise" is that everything is physical activity.
I told the people at orthopedic urgent care that I can't do physical therapy because my condition doesn't allow for exercise. They gave me a list of things I could do at home. They were exercises. I was frustrated at first, but it made me realize how able bodied people can't conceptualize "no exercise" at all.
Walking down two hallways to get to my college class is exercise. Cooking and baking are exercise. Getting something from downstairs is exercise. Even typing is exercise. Each one of those things chips away at my ability to do simple things, like sit upright or speak or even just stay awake. When someone says they can't exercise for medical reasons, that means they can't, and pushing them to do physical activity because it "doesn't take that much energy" is dangerous. Everything takes energy.
Breathing takes energy.
Thinking takes energy.
Having Emotions takes energy.
Being in Pain takes energy.
Even being Unconscious (Sleeping) takes energy.
And those things are non-negotiable. Those aren't even „do them or you'll suffer“ things, those are an automatic part of just existing.
Moving enough to prevent sores.
Regulating yourself to not be in Crisis.
Coping with symptoms – chronic ones as well as additional illnesses or infections, if you have. (Many chronic illnesses make people more vulnerable to infections, and many chronic illnesses get worse when currently sick. Cue the Doom Loop of Sickness.)
Having some kind of stimulation (a podcast, a book, …), because boredom is a form of torture according to Geneva Conventions (and can make a whole bunch of mental issues a lot worse).
Having the sensations of Light and Sound around you.
Taking your meds (being at least a little upright, reaching to the meds, getting them, getting them out of their container, getting them to your mouth, drinking after, swallowing, hopefully not choking – alternatively doing IV or liquid meds or whatever, with usually even more steps)
Drinking (being at least a little upright, moving the glass to your mouth, not spilling, swallowing, not choking, hopefully refilling the glass, putting it away).
Eating (being somewhat upright, cutting the food, getting food to your mouth, not spilling, chewing, swallowing, not choking, digesting the food).
Being upright (having postural stability, either freely or supported, holding your head, keeping your blood going, not fainting, being alert to presyncope signs so you can sit or lie down, ...)
Bathroom trips (getting out of bed, getting to the toilet, sitting on the toilet, getting your pants down, doing your business, getting your pants back up, getting to the sink, washing your hands, getting back to bed, getting back in bed).
Those things also take energy. More energy, in fact.
Those things are necessary – Basic Needs.
And yet many times I can't do them, I have to wait for hours until I have the energy to do one of these small actions. Because they take a lot of energy. So I suffer (more).
So when I get told that something like making a simple meal or showering or leaving my room doesn’t take energy and is so simple, I want to scream.
Wrong.
Those are like Extra Credit Work. Things that weren't existentially necessary, but if you have extra energy, you can do them and get something fun – time spent with people, nicer food, a sticker reward. A little bit of Living, to break up the endless gray of struggling to just Exist.
You *want* those. I at least desperately want every shred of extra-credit I can get – because those are the moments where I feel alive, not just Existing. But way too often, I just can't.
And just like that, a cooked meal, a talk with friends, a shower, a change of clothes, having and expressing an opinion or just some fresh air become a luxury. Sure, sometimes it's worth it – for mental health or for keeping the connections to others. At least you tell yourself that, until you meet the consequences.
Because oh yeah: Consequences.
There's a price to pay for (over)spending energy. You'll probably hurt a lot. Like a lot. You might not be able to move at all for a while, just lie wherever you got stuck and be trapped in your own body and brain, until you get enough shreds of energy back to do more than breathe.
And that’s just short term. There might be permanent consequences too. Every time you spend more energy than you had, you’re gambling – you will have destroyed your energy budget, your muscles, your body a little more and be able to do even less in the future. Maybe it’ll come back in a few days. Maybe in a few weeks, months or years. Maybe just a bit will come back. Maybe it won’t at all. Who knows. Certainly not you, or anyone else (though they’ll be more than happy to decide on something and be upset when their expectations for “reasonable recovery” aren’t met).
Actually, even if you do everything right, this might happen anyway: any common Sickness or additional Strain on your Body contributes to this too, and will very likely result in a crash too.
And what happens if you’ve overspent one time too many? What if those basic needs become too exhausting? What happens when dim light, chewing, or words become too exhausting? Further, what happens if breathing, thinking, being conscious becomes too exhausting? What happens if your body doesn't have the energy to keep itself alive anymore?
Well... I personally haven't found out yet. I only know that I'm right at the edge, and if I get any worse, I will have a big big problem.
Others unfortunately have found out, have become Very Severe Me/CFS patients, have had to fight to have their basic needs covered by the healthcare and social system, to be helped and not abandoned in the name of “encouraging independence” or “showing you that you can do it just fine, if you stop worrying” or other wrong and ableist reasons.
Think of them, and of this struggle, whenever you see a newspaper report that someone else died, because their bodies could not keep going and the medical team to help them did not exist or refused to do their job.
So that's the other side of the coin, when someone asks me if I can't just do ..., for them, surely it can't be that bad.
Oh yes it can and it will. I know. I’ve tried. I live like this. Do you?
Let's do some more examples.
Sitting / Standing takes energy – Holding yourself upright, either freely or supported. Holding your head up, usually freely. Keeping your blood going. Not fainting. Being alert to presyncope signs so you can sit or lie down. ...
Typing takes energy – Moving my hands. Concentrating on forming sentences. Reading what I have written. Correcting mistakes. Thinking. Having an opinion. Light and Sound. ...
Preparing food takes energy – Getting out of bed without falling. Getting to the kitchen. Moving around the kitchen. Sitting / standing. Light and Sound. Being alert to not burn the food. Not hurting yourself on knife or stove. ...
Being around people takes energy – Having more Light and Sound around you. Masking your symptoms. (I'm not saying this should be done. It's sad and wrong. I'm including it because many of us do, to seem more socially acceptable, and also because crying from pain kinda interferes with talking.) Hopefully listening to them, concentrating, understanding their words, reacting appropriately, regulating your emotions and nervous system, processing the additional input...
Showering takes energy – Getting out of bed. Deciding what clothes to wear after. Getting your clothes, towels, shower stuff. Undressing. Getting into the shower without falling. Turning on the tap. Getting wet. Not fainting – hot humid environment is very bad for circulation. Enduring flashbacks because trauma (if applicable). Getting your hair wet – arms over head takes more energy. Getting soap on yourself and in your hair. Rinsing yourself and your hair. Getting back out of the shower without falling – caution, wet! Drying yourself. Getting dressed. Putting away the old clothes, towels and shower stuff. Getting back into bed without falling.
And so on and so forth. For Everything. By now, you hopefully get the picture.
(Oh, also: Binders.
Binders shouldn’t be worn for excersize, because they can affect your breathing and your ribs. So if existing is excersize and my breathing is already bad, I shouldn’t be wearing a binder ever. But I need a binder, to have less dysphoria and not have to spend energy trying to not have a breakdown because of that.
Other transition options like surgery are even worse, because – where would this body get the energy to heal and struggle even more? Where would I get the support needed while I'm restricted in mobility from yet another issue– especially arms, which are important for transfers and if you can’t walk well anymore and all sorts of tasks?
Yay.)
I know if you're abled, you don't even think about energy and exertion aside from strenuous tasks – and that then exertion is more a matter of temporary discomfort and not very real and permanent danger to your health.
If you're disabled, things are different. Doing anything, even "natural automatic" stuff means a million little tasks, many of which are impossible or simply too costly – including the need to think through all those, plan them, and judge what you can do.
There is trade-offs. Because I typed this, I won't be able to eat lunch. If I sit up now to breathe easier, can I still go to the bathroom later? If I took a med / had a heating bottle / drank something / ... it would help a little, but I don't have the energy to do so, so I'll suffer. Can I afford to have an opinion now, to think, to be awake?
There is the constant knowledge that we need to do some things to exist, but adding on anything will result in losing elsewhere, and doing more for whatever reason means risking our remaining health.
So please go away with "oh that's easy" and questioning and doubting our assessment of our abilities in that moment and pressuring us for activity and excersize.
We already do activity and excersize – probably more than we should. You just don't see, because for you that's "simply part of existing" and nothing even worth thinking about.
And that is a fucking Luxury.
