@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.
"Woman told exhaustion was just ‘A-level stress’ overcomes debilitating diagnosis: Elizabeth Hope, who was diagnosed with ME, has since overcome her adversity to become an award-winning wheelchair dancer"
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.
"an OCR investigation revealed a State denied a
prospective parent with #ChronicFatigueSyndrome & other disabilities the opportunity to become a foster parent"
It can be useful to get people who are not doctors to write reports about how an illness or disability has affected somebody when applying for disability payments in lots of countries
This document is from the US but the questions could give ideas about areas people in other countries could write about when writing such a report
Hi, I'm a science & tech nerd turned science fiction & fantasy author. My first novel (Machinehood - near future AI) was published last year, and my next one (Meru - far future space opera) comes out in Feb.
For the past 5 years, I co-edited Escape Pod, a weekly #scifi podcast. I retired because I've had #LongCovid for almost 2 years, now most likely #mecfs
Really like being here and connecting with friends who didn't show up as often on the bird site.