fluffy rambles (chronic pain)
Rambles that are fluffy, by fluffy
- indieweb: fibromyalgia
- indieweb: chronic pain
- indieweb: intersectionality
- indieweb: disability
- indieweb: rant
I’m in the midst of a really bad fibro flareup lately, and am burning through my sick days at work pretty quickly. It’s frustrating and I need a way out, and something else that I can do as sustainable income.
I’m in a bunch of differently-intersectional support circles, and I’ve noticed the following:
Disability circles: Doesn’t understand the impact of my disability on my profession (because they don’t understand what my profession entails)
Technology circles: Doesn’t understand the impact of my disability on my profession (because they don’t understand what my disability entails)
The thin segment of disability+technology together: Doesn’t have any answers either, just sympathy and relatable experiences with not knowing what the hell to do
I keep asking in technology circles to see if anyone knows other jobs that would use my brain without needing to use my body and I keep on having to grow the list longer and longer with preemptions. No, I can’t go into management; I’m not good at coordinating other peoples' moving parts and it’s not what satisfies me as an engineer, and the brain fog from the pain makes this not a thing I’m likely to be able to get good at. No, I can’t go into teaching or training; that has even more requirements and rigidity in terms of my scheduling and I cannot do anything that requires that I be available at precise times on specific days.
I ask in disability circles, and there’s another, different list; no, I can’t use voice recognition software to program (not while there’s shared open-plan workspaces or I’m working in languages which aren’t suited to it – and I usually don’t have a choice of language). I still can’t go into management; it’s a completely different set of skills and not a natural progression. I already have a good ergonomic setup, both at home and at work. And employers don’t look too kindly on me smoking weed all day.
And in the intersectional circle, the only response I ever get is: “I have no idea, let me know if you figure something out.”Read more…
I was kind of thinking about skipping this last week because the previous few sessions were feeling not very useful for me, but I ended up going anyway and I’m glad that I did.
Also, I’m not sure if I mentioned this before but if you’re in Seattle, these workshops are available to you whether you’re a Kaiser Permanente member or not! There’s more information about that on their living well classes, including online versions (and they also have additional online resources).
Main topics today:
- Working with healthcare providers
- Weight management (ugh, but don’t worry)
- Looking forward
Oops, I forgot to post these earlier while the session was fresh in my mind. I’m going to have to work a lot harder to decipher my handwriting this time around.
This was the 5th week. Next week is the last one. I’m kind of glad to see it ending. Sigh.
Topics covered this week:
- Depression management
- Physical activity
- Mind management
Week 3’s curriculum covered the Moving Easy Program (a simple but effective stretching and minor strength training regimen), pacing and planning, treatment evaluation, and decision making strategies (both for treatment seeking and for other aspects of life).
Last week’s action plan was to do 10 minutes of yoga in the morning, 4 times. I was mostly successful, but only did it 3 times, as today I slept in from having to work late last night (doing a final build of the iOS app for Borealis).
Throughout today’s session we also got some useful affirmations that I can put onto my affirmation board:
- Practice makes progress
- You choose
- Are you choosing pain?
This week was a lot more comprehensive than the first week, and it feels like a lot more happened in about the same amount of time.
The major areas of focus were: problem-solving, dealing with difficult emotions (especially useful for me right now), physical activity, relaxation techniques, and dealing with fatigue.Read more…
A few months ago I signed up for the “Living Well with Chronic Pain” workshop that’s put on a few times a year by my HMO. It’s a six-week course that meets once a week. I figure it would be helpful to share the key insights from each session here, since I know a lot of my followers have similar issues and would like to benefit as well.
The textbook for the workshop is Living a Healthy Life with Chronic Pain (affiliate link). It also comes with a pain-management exercise audiobook on CD.Read more…