the first thing I did in my journey out of bed was kind of an accidental win. I bought a weighted blanket when I didn’t even have a gp because my other one left the area just before the pandemic hit, and didn’t give me any suggestions where to go when I was struggling a lot with brain fog; so I was without support or painkillers for a year.
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 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.
you can exercise. you just need to vastly vastly change what the word exercise movement activity mean for you.
big pain day today so I’m feeling very bitey esp about doctors
