I'm a firm believer in making space for marginalized people. I am a minority in many ways, except that I am white. I acknowledge that privilege, and try to use it to benefit others.
@halcionandon@disabilityjustice I am in the US and my pain management provider usually only makes me go in every other month I just called for a refill on the off months.
Last month I asked if I could increase my dose by 5 mg a day because I’m just not getting enough coverage with the amount of insomnia that I experience. She agreed but only if I would come in next month rather than call in. I laughed and I was like yeah I can come in whenever I’m like 15 minutes down the road. But I am well aware that they are just trying to get as much revenue as they can before the end of the year. And I’m not objecting because I really do need the extra 5 mg. But it feels gross that it was presented that way.
And man, just having that extra 5 mg if I need it made such a difference, I have noticed that about half the days I don’t even take it because I don’t need it. But knowing I have it if I caused myself extra pain makes it easier for me to do what I need to do because I don’t have to worry that I will be an extra pain later because I can do something about it if I am.
Of course I still have to pace because of the #MECFS but at least I know I don’t have to put myself to bed at 6 PM on a heating pad because the pain is just overwhelming.
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I'm considering going to this protest, "“Scrap The Green Paper” coalition calls on the Department of Social Protection to "Scrap the Green Paper" on Disability Reforms." outside Leinster House on Thur, Dec 7.
Doctor appt today, and he happily wrote up all the pain relief I needed prescribed for my shoulder.
I thought it might be difficult to get him to prescribe endone, panadeine forte, mobic, panadol osteo, and palexia.. but we went over how I was taking them all and he agreed that I was fine with how I was approaching it - and that taking such a variety of things meant actually taking less opioid based meds because I was able to keep on top of the pain with things like panadol osteo.
We also did my mental health plan and I hit a 40 on the K10.. which is Very Fucking High. We talked about that, and about how therapy is helping and that a big part of the 40 score is probably actually pain related as well.
He agreed that I showed great insight into my illness and that I was comfortable with being vulnerable enough to ask for help, so I get to skip hospitalisation (fucking yay!) because I have a good support system and I know how to access acute assistance if needed.
But still, 40 was even higher than I was expecting tbh. I'm usually around a 25-27.
I woke up having a hypo this morning and I don't know if I still feel gross after that, if I'm getting sick, if it's a fibro flare, or if my body is just overreacting to the sudden change in temperature.
But I feel exhausted, I have such a headache, and my pain is like a 7/10, and I can feel my brain moving slow like molasses.
I've started a new Fetlife group for disabled people. It was started after it became apparent that the other group was going to allow chasers to fetishise and objectify disabled people and that the group wasn't safe for us.
Philosophy and Madness a combination that makes me smile!!! #MadLiterature
Too mad to be true II - The promises and perils of the first-person perspective
The second Too Mad To Be True conference that was dedicated to exploring the various links between philosophy and madness. The atmosphere was vibrant and it initiated new ways of thinking and communicating around issues of madness and philosophy. The central theme was both relevant to philosophical and mad theories and practices: ' The promises and perils of the first-person perspective'. The conference was hybrid: both in person, in Ghent, Belgium, as well as online.
I have a silent migraine at the moment, and it's so weird.
I have all my usual migraine symptoms - blurred vision, black floaties, dizziness, my eyes are streaming with tears, blocked sinuses etc.. but no pain at all.
It's so strange. I mean, I'm not complaining. If I can switch out all my migraines for this I'll be a happy muffin. But, it's weird!
"My doctor signed it without question. I still was not comfortable with the term “disabled” then and I was still trying to pretend I could physically do what I was longer able to do. “Passing” as able-bodied was significantly easier than trying to live with disability (or so I thought at the time), and I was coasting on denial as long as I could."
This is why asking people with chronic pain issues what their pain scale number is doesn't work.
When I did my shoulder injury, there was a definite POP sound, & the pain was about a 2/10.
I ignored it for about 4 months before going to the doctor, bc while it was still sore & I couldn't' move it quite properly, I knew that my doctor would tell me it was probably a sprain or a strain & that they could take some months to heal.
My doctor said exactly that, & when I pointed out that it had already been 4 months, sent me for an XRay and ultrasound, decided it was bursitis & sent me for a cortisone injection. The pain was maybe a 4/10 on the worst days at this stage. My range of motion was impaired, & the pain being constant day after day was wearing on me, as was only sleeping a couple of hours at a time... but hey, I have a chronic pain condition. I can just suck it up.
6 months after the cortisone injection I go back to the doctor bc of the pain, it had gotten slightly better for a while, but now it was about a 6/10 & by this point had been going for nearly a year. He explained that cortisone often needs a second course, & that 6 months is about normal for it to 'wear off', so we'll do another cortisone treatment, & this time refer me to physio as well (to start a few weeks after the cortisone so that the swelling etc was settled).
The cortisone dropped the pain back to maybe a 2/10 most days, but I was still not sleeping properly and my range of motion was getting worse.. or maybe I'm just getting more tired of being in pain all the time? I don't know. At this point I started wondering if maybe this is just what 'old' is for me, & maybe I was being a sook & didn't have such a high pain tolerance after all.. especially if the pain is like a 2/10 & I'm getting this upset about it.
It never occurred to me that I was getting so upset about it bc my pain was NOT only a 2/10.
After another 3 months of physio not really doing anything, I went back to the doctor & asked for an MRI.
The MRI shows:
the shoulder had dislocated
one high-grade tendon tear with a significant retraction of the tendon
3 other tendon tears
muscle volume loss
bursitis
mild arthritis with degenerative changes and joint effusion and thickening
a SLAP tear with fraying in two places
two lesions where the bones smacked against each other in two different spots during the dislocation
a muscle and a tendon sprain
2 other effusions
another thickened and frayed ligament
All of this should be able to be dealt with via physio rehab, except the SLAP tear, which will need a surgical review & will (best case) be able to be dealt with via an arthroscopy.. but might need a more serious & invasive surgery.
That's 18 months of pain, sleep loss, & inability to function to my normal level because the experiences of someone with a chronic pain disorder can't be summed up with "between 1 and 10 how painful is it?"
Sanism is normalized in relationships with institutions.
It’s not talked about.
It’s woven tightly into unquestioned assumptions (common sense knowledge)
It’s a tool for power and control.
Refused meds by GP who promised to prescribe until I found a new GP (he dropped me because my case is too complex). Changed his mind! Now have 13 days to find any doctor to write a script or #withdrawal agony for me & no #pain control.