#fuckms — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #fuckms, aggregated by home.social.
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For reference, I pay about £80 for 2 month’s supply of oil, plus £50 consultation fee every 6 months. That’s a private clinic, so it would be a lot cheaper for the NHS to supply and, I’d argue, would actually save money. It’s political, isn’t it? They won’t allow it to be prescribed because it’s political.
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I used to be on a disease modifying drug that cost ££££ a month on the NHS. I’m not on that anymore, but they still aren’t able to prescribe a perfectly legal and proven therapy. Why??
The law was changed by Theresa May, and it perhaps won’t surprise you to learn that her husband is one of Europe’s biggest investors in cannabis cultivation.
Make it available, FFS.
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I have #MultipleSclerosis which causes muscle spasms in my legs that keep me awake. I take drugs to try and control this: baclofen, gabapentin. None work as well as cannabis. It’s legal in this country, but next to impossible to get on NHS prescription. When I finally convinced my neurologist to write me a (private) prescription, the estimated cost for 2 months supply was nearly £1000. I now use a private clinic at a fraction of that cost, but it’s absurd.
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My Facebook memories this time of the year are filled with marathons. I can’t run much any more, but although #MS has taken a lot from me, it will never take these memories away.
(And, let’s be honest, marathons are bloody hard work).
If you’re running this weekend, best of luck and, whatever happens, remember to try and enjoy it. There’s a million people out there and they’re cheering just for you!
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It’s #MS Awareness Week.
If you aren’t aware, #MultipleSclerosis is a chronic, incurable condition. It’s progressive, can affect any part of the body and can be devastating.
Progression was initially slow for me, but it’s picking up speed and is now taking more and more away from me.
I do as much as I can and remain positive, but it’s a motherfucker.
Here’s a film made a few years ago that always makes me well up & is so beautifully made. Please enjoy.
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I had a terrible night with leg spasms last night. Very little sleep and just the awful inability to get comfortable, never mind to nod off. After pumping all night, they’re then so fatigued the next day too. Better today (I even managed some rowing this morning), but I now find myself dreading going to bed in case it happens again. It feels so arbitrary and all the gabapentin, baclofen, analgesics and medical cannabis in the world sometimes just won’t touch it.
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I picked up my shiver squad badge at the lake this morning. 30 winter swims from the beginning of November. I absolutely love swimming in the winter and it’s a pleasure to be a part of this wonderful community.
I don’t even like cold showers, for goodness sake. This is my third year in a row getting this badge.
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So that was that. After 2 and a bit years of timing breakfast and dinners to accommodate #vumerity, last night, with some average tapas, I had me last 🤷
Roll on #mavenclad on Monday.
#drugfreeweekend
#MSawareness
#fuckMS -
So that was that. After 2 and a bit years of timing breakfast and dinners to accommodate #vumerity, last night, with some average tapas, I had me last 🤷
Roll on #mavenclad on Monday.
#drugfreeweekend
#MSawareness
#fuckMS -
So that was that. After 2 and a bit years of timing breakfast and dinners to accommodate #vumerity, last night, with some average tapas, I had me last 🤷
Roll on #mavenclad on Monday.
#drugfreeweekend
#MSawareness
#fuckMS -
"You never get used to it, you just get used to living with it" - LightningDuck
#MultipleSclerosis #MS #MSSucks #FuckMS #ChronicIllness #ChronicDisease
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Infusion for #MultipleSclerosis is officially done! And this time I got smart and took a couple days off so I don’t wind up in urgent care again. Woohoo!!! No more treatments for six months. Just an MRI and neuro appointment between treatments. #rituximab #FuckMS #rituxan
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CW: #MultipleSclerosis Infusion
I have my twice yearly #rituximab infusion for MS tomorrow. I’ve loaded up on snacks and I’m gonna charge my Switch, grab a book and download some tv. I’m lowkey stressed about it. Writing codes at the Co-Op backwards and shit.
Last 2x I ended up in urgent care because the directions about getting checked out for issues after infusion are pretty scary. Here’s to me knowing what to expect and not having issues this time! #rituxan #pwms #fuckMS -
MS is highly prevalent in people in the #PNW so even if you don’t think you know anyone with MS, you probably do. #MSAwareness #MultipleSclerosis #FuckMS
4/4 -
Today I get to talk to my neurologist about my MRI results, get whatever labs they assign and assess my current treatment. With two new lesions showing in my #MRI I have no idea what to expect.
#MSAwareness #MultipleSclerosis #FuckMS
3/4 -
This month marks nine years from the bout of optic neuritis that led to diagnosis. There is no cure for MS and every day of living with it is different. I’m lucky in that I currently go long periods of time without relapses. Not everyone is so lucky. And there’s no guarantee that my luck will hold.
#MultipleSclerosis #MSAwareness #FuckMS
2/4 -
March is #MultipleSclerosis Awareness Month and boy am I aware right now. How many doctor’s office fish tanks have I sat in front of throughout my life?
MS is a neurological condition where your own immune system attacks the myelin sheaths that protect your nerves. It can manifest for folks in any number of ways. For me, it has presented itself as optic neuritis, vertigo that lasts for weeks on end, intense numbness and tingling and pain from my rib cage down and more. #MSAwareness #FuckMS 1/4
