The Chronic Fatigue Fitness Blog

I asked him “how?”

He looked confused. Said I should try a bit every day

I said “not when, how?” I asked what exercises I should do

He suggested half a dozen options that had all been explicitly banned by other doctors. I’m not allowed to run. I’m not allowed to bike. I’m not allowed to use my rowing machine or my punching bag.

I walk my dog whenever I have the energy and when it doesn’t hurt too much

What else can I do?

He told me I should exercise more

it’s pale pink and fluffy. lighter than the one the company recommended for my age and size, and it’s still very heavy for me. the way all of the beads pull in such an unwieldy fashion can make it difficult to pull onto the bed. I could only handle half an hour at a time at the beginning.

but slowly, completely by accident, it actually helped. especially my core muscles and thighs from turning over in bed. I was just feeling anxious. I had no room in my head for thoughts of exercise. but I actually put on a scant bit of muscle. it was crazy

the second bit of exercise I started doing was to get out of bed and sit in a chair by the window instead of laying in bed.

the third, wearing clothes. showering a little more often. putting two braids in my hair instead of one.

then doing laundry

then learning to cook again, because brain fog had robbed me of most of what I knew.

and of course cooking meant more and better food, which gave me more energy and helped my body get a bit stronger

in there were stretches. I had no room in my head for videos or books so I did the three I could still remember from back when I saw a good physio years ago. I could only do three repeats at first, not even the five that was a recommended set.

all of that helped me get strong enough to make it to sit through a two day course at the pain clinic, and thankfully they weren’t like OP’s doctor, they were adamant that pacing is vital to any improvement if you have chronic pain. pushing too far too fast is the enemy. low and slow. persistence. is key

it was crazy to sit in that chair with my blanket and a pillow to hold onto so I could lean on it, and prop myself up, because a lot of what they said I’d kind of worked out. but they were scientists and doctors who had all experienced chronic pain and so they had the terminology and were able to piece it together

and most of all they vindicated my own course that I’d stepped on by accident.

and finally when my new gp asked me every month whether I’d thought about taking some walks I was able to say ‘I believe I’ll get there, but not yet. and the pain climic agree with me.’

and I did get there. I don’t walk as much as she would like but honestly I don’t think she’ll ever be happy lmao

the thing most doctors, even many chronic illness specialists and chronic pain specialists fail to account for is that the activity you’re already doing is important (vital, even, because personal maintenance and living life is very important!) and it’s already exercise and strain and very energy consumptive. it counts! and also they greatly underestimate the incredible value of seriously seriously small, tiny, incremental steps that can actually account for massive improvement over time for the chronically ill—if we’re allowed to pace ourselves properly, for, like…ever and not just a certain period of time

I don’t know your pain, I don’t know your body. but I recommend that you sit down and think about—or perhaps actually just take note over the course of your days and weeks, what activity you’re already doing. maybe at first you’ll only notice when something makes you hurt, but take note of it. because that matters*. and you can build off of that. slowly slowly slowly.

you’re a persistence predator. we walk slower, we do everything slower; and many of us will never get to a place where the average physio will approve of our condition.

but fuck them. we can build muscle; I’ve seen it. we can gain small amounts of improvement without undoing all of the good work we put in. but we have to be patient, and persistent, and we have to be cautious and we have to be brave

*I do feel the need to add that I also learned how to arrange my day so that some activities hurt less. and I learned over the course of a year —and really i’m still learning—to see my days in fifteen minute to half hour increments because I have to consider PEM as well. stretches have to happen if I sit in the chair too long. especially if I’m on my computer. a very short walk is best if I’ve been out and sitting at tables because that puts so much strain on my back. it takes spoons and it’s really tempting to think it’s too much but I generally find the pain the next day if I don’t takes more spoons than if I do. most activities at home are done in fifteen minute on thirty minute off shifts. when I say slow I mean slow

that’s not always possible. I don’t have kids, and just sent the cat I was living with to another home with someone who could bend without crying all the time. I have time and space to set that pace and not everyone can. life can be complicated.

but

you can exercise. you just need to vastly vastly change what the word exercise movement activity mean for you.

anyway I hope that helps

He suggested swimming. "You're right," I said, "I love swimming and I can do it better than just about any other aerobic activity. But I don't have a swimming pool, and I live about 45 min from any facility with a pool that I could join, and I don't have a car of my own, plus driving is a huge trigger for my back. So do you have any other suggestions?"

Same thing happened when I got into fighting. I got even stronger, and I got *fast*, man, and nimble, like a cat. Still chubby.

Body-building culture is a bunch of crap, my dude. Functional muscle is not necessarily toned or lean. You can be swole as hell and still be heavy. And that’s cool.

And every damn one of those huge shredded motherfuckers has the endurance of a fucking newborn puppy. Fifteen minutes into warmups and they’re panting for air like like they’re about to die. I’ve sparred them and every one of them telegraphs their moves about two weeks in advance, and are slower than my dead grandpa because their huge useless muscles get in the damn way. 

Now. I also work with a couple of guys who are not weightlifters. They do, however, do very physical jobs and are Big Dudes. Picture this sort of build. 

No abs to speak of, a bit of a tummy, and those motherfuckers can pick up one of the weightlifters and throw them. 

And they’re fast. Like, unfair fast. 

it’s also okay if a disabled person isn’t trying their best. abled people sure aren’t trying their best every single day! so why should we, as disabled people, be expected to? why should we have to work our asses off every day?

(tldr at bottom)

I absolutely hate when people invalidate chronically ill people with exercising. Someone could be like. hey I’ve been in heavy pain, experiencing extreme fatigue and nausea daily, and am unable to perform daily tasks, and it’s been like this for a very long time now. And then someone else will respond. Well you know, it’s because you don’t exercise. I cant stand this.

This is bad for so many reasons!!

it puts the blame on the chronically ill person. being chronically ill is very difficult physically and emotionally, and many people already feel a lot of guilt and shame in relation to their disabilities. And some don’t. But either why, a person is not to blame for being chronically ill, and implying so can be so damaging and honestly, heartbreaking.

it can be so invalidating!! You’re basically saying, well it’s your fault and if you just exercised you’d be better! But that literally not the case for so many disabilities. It’s not true. Exercising can be so difficult and even painful for so many.

if someone knows that exercising won’t be the fix all solution, but you keep insisting that it is, that can make people become discouraged from exercising and even resent exercising. If you’re blaming all of someone’s already emotionally and physically difficult medical issues on something, especially when that something can be so difficult and might not even be a realistic solution, it can be so hard to view that thing as something can help you. And resenting exercise can be so difficult in the long run. Because it’s true, exercise is so important that in some cases can be a really important part in healing, in others not, but weaponizing exercising can make people see exercising as a weapon, as something offensive, as something used to invalidate you.

with any other form of ableism, it can actually make people believe what you’re saying, at least on some level. Even if they know it’s not really true, it’s difficult to not internalize the stupid shit that ableist people say to us.

My experience of all these effects for me:

I’ve been hyper mobile for most of my life, if not all, but I didn’t know that. Then when I was ten, my knees started to hurt. And it’s hard for anyone to go through mass amounts of pain, but especially at such a young age. It was especially hard for me because I was very isolated at that age. For me, my only life was home and and school, nothing else. And at school, I spent the first few months barely speaking at all because of my autism. I was at a new school, with a class full of strangers, and I didn’t feel comfortable speaking to anyone or just at all.

Eventually, I made a friend and being able to speak to people just kinda kicked in. But it was still difficult. And it was around that time that I started having more problems at home. I was fighting with my parents, my parents with each other, bad, my sister with me and my parents. So when my knees starting hurting, it was really hard, I think especially because they hurt so bad. Whenever my knee would lightly brush against anything, and because of autism I would always be spinning in ny chair a lot, hitting things, that would be often, I would be in excruciating pain. I would hurl over and have to stop myself from screaming out in class.

And it took a while for me to finally come up with the courage to tell someone something was wrong. It was mainly because my home and school life at the time wasn’t great, and my pain was very great so it was really sensitive, but I don’t even really know why I was so scared to bring it up, but I was. My mother and I pulled up in our drive way after school and before we got out, I told her that I had to tell her something. I told her that my knees have been really hurting lately. It was probably going on for a few weeks or a few months by that point, I can’t really remember a lot from that year but I know it was going on for a bit by then.

And maybe if she had asked more questions, I could have told her more. I could have told her that my pain was excruciating, I could have told her it was going on for a while, I could have told her about the growing bumps on my knees, I could have told her about how I whenever I hit my knee on the leg of the table at school it would take all of my energy to not scream at the top of my voice in pain and burst into tears. But she didn’t ask. She told me, well, it could be something, but she was scared I’ll get mad. I told her to tell me, and she paused and told me that people that are fatter sometimes have knee pain. At that point in time I was always getting frustrated with her cause she was telling me I was too fat and too heavy and trying to restrict my food.

I would’ve stormed out of the car then, but because of her being like oh you’ll just get upset I told her. No but it like really hurts. And she just brushed it off and said it’s because I’m over weight and I need to exercise more. And then I stormed out. I never brought it up again. Fast forwards four years, more or less, summer of last year, it was arthritis. Osgood Schlatters. This specific type of inflammation affects the growth plate in your knees. Obviously, since then I have grown, and I no longer have a growth plate, but my knees have been fucked up since.

And when I finally went to the doctor for knee pain, I brought up other symptoms as well, and it was like a flood gate. And since then I’ve been diagnosed with various disabilities (partially to fully diagnosed. Also self diagnoses). And throughout my disability journey, I was so resentful of exercising, and of my parents and doctors. My parents, my ableist pediatrician, just loved blaming most of my problems on my exercising habits. And it was hard to differentiate that blaming and good doctors actually trying to support me with exercise. I was finally able to get over my resentment once I started physical therapy.

5. Resenting doctors and help is another reason! This can cause people to become afraid of doctors and appointments and reaching out for help. The more sensitive a topic is for a person, the more painful it is when they’re let down, and then the more sensitive it becomes, and the more they fear getting let down. Let down by parents, friends, partners, teachers, bosses, etc. Not just doctors, but sometimes also especially doctors. And it’s so hard to be able to advocate for yourself to doctors, when you shouldn’t have to, they should be helping you. It’s painful when a doctor lets you down, and it’s really not easy to insistent more testing, more options, more treatments, different doctors, etc.

But because of my difficulty with exercising, I have such a hard time with exercising habits and at the moment I can’t exercise because I just don’t know how to form these habits.

6. and also!!! (Back to the list) All of these reasons are so important, and especially if you’re disability makes exercising extremely difficult or near impossible. In many cases, people won’t be able to or will be too afraid to exercise prior to a medical appointment. For example, I have pots (well basically but this isn’t the time to get into that). For a lot of people with pots, it can be so difficult to exercise. And if you don’t know your limits, you can push yourself too hard (especially when your entire life is basically pushing yourself just to get by) and that can cause a flare up! Or let’s say for example you have pots and are hyper mobile. Some exercises can be really painful and damaging. Without knowing that, exercise can just seem to make things worse in it and of itself, or worsen things. And without a doctor to explain that and how to advise on a routine or something, a lot of people just avoid exercise! But the thing with pots is that the less active you are, the worse it will get, and then the harder exercise will be and it’s this horrible loop. And it’s loop that some people don’t even know that they’re in because others are invalidating their experience and just telling them to exercise and discouraging them from going to a doctor and blaming the disabled person, furthering the vicious cycle.

And this is an example specific to pots, but situations like this or similar are so prevalent and fucking blaming someone’s lack of exercise is just horrible, even if someone just does it out of ignorance. There’s a difference between knowing exercise will help and blaming someone for not exercising. It’s heartbreaking when this happens, and it does happen, a lot. People need to learn how to treat people.

TLDR: blaming people’s disabilities on them not exercising is horrible and shit and damaging. It’s invalidating, blaming, and leads to people not taking symptoms seriously. Don’t do it. And if someone blamed your disability on you not exercising, fuck them, and don’t give up on yourself, I know it’s hard.

[Image Description: gif of sleepy gray kitten's head falling, face planting onto bed]

Comforting 1-pot meals 🍂

One pot red lentil chili

One pot butternut squash quinoa chili

One pot everyday lentil soup

One pot chickpea tomato peanut stew (West African-Inspired)

One pot curried chickpea soup

it’s also okay if a disabled person isn’t trying their best. abled people sure aren’t trying their best every single day! so why should we, as disabled people, be expected to? why should we have to work our asses off every day?

If you’ve talked to other people with CFS/ME this is probably the first thing you’ve heard, but if you’ve only talked to medical professionals you might not know this or may have been told the opposite. Exercise fucks us up, hard. Or at least, too much exercise does, and “too much” is probably much less than you expect it to be.

CFS is characterized by PEM (post-exertional malaise). You’ve probably noticed that sometimes you’ll be doing something and then just abruptly have no energy left and feel completely wiped and have to lie down and maybe sleep for a while. You’ve probably also noticed that sometimes you feel awful for no apparent reason. The reason is that CFS is fucking evil, and sometimes you’ll basically overdraft your spoons account and feel fine in the moment, only to get hit by the aftereffects a day or two later.

(And it is like overdrafting your bank account, in that it’s not just you have to pay back the amount you didn’t have, you get extra bank fees on top of it. Which if you could afford them you wouldn’t be having this problem in the first place. Anyways.)

When I didn’t know what was going on, I’d swing from having days where I felt almost normal to days when I couldn’t leave the apartment, take a shower, get myself food, or even sit upright for extended periods, and my health was getting worse over time. After I figured it out, I followed advice* to track my activity over two weeks and aim for not going over the average of that on any given day, and that (while admittedly inconvenient) did mean my symptoms started leveling off. Along with things like starting to take a folding stool with me wherever I went so I could sit down as often as I needed to.

At this time, I was also getting lower back pain and knee pain. I saw a PT who was actually really helpful as a support person for figuring out how to pace myself (this might not generally be the case; my doctor was willing to refer me to one with experience with chronic illness which I would recommend if you look for a PT) and who gave me exercises to help with my back and knees that I could do for just a couple minutes at a time, and, this is important, while lying down.

She also explicitly gave me permission to only do part of the exercises if I was having a rough day.

Sometimes you get body parts that are gonna hurt unless you pull off some minimum level of moving your body. But even with CFS — well, maybe not at all levels of severity, at many levels of severity including anecdotally for some bedbound patients with a very loose definition of exercise —if you pay attention and make very small changes and notice how you’re doing right after and for the next couple days, you can find that sweet spot of not too much but enough to be helpful.

In general exercise that raises your heart rate is the riskiest, so it’s worth being extra careful about that.