meganellis.bsky.social
Freelance technology journalist. Gamer, nerd, and animal lover living with fibromyalgia.
🔗 www.meggwrites.com
83 posts
56 followers
40 following
Regular Contributor
Active Commenter
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Yeah I've heard it's difficult to get referrals, especially for mental health conditions and neurodevelopmental conditions. My ADHD and autism screening processes were so quick and I have a specific psychiatrist I see. But then the downside is how expensive medical aid and medicine is
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People going on about Starlink when satellite solutions already exist here. The only way poor communities would be able to access the internet from satellites would be if they were heavily subsidised by private or public companies. And it looks like govt is leveraging mostly 4G to connect rural ppl
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I'm glad you have a support system. Disability grants here are about R2500 (£107) per month, which wouldn't even cover my medicine costs. My Aimovig is only available through a specialist pharmacy and medical aid doesn't pay, and that alone is R6000 (£258)
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Yeah it's really difficult to work with it. I've been freelancing since 2017 and whenever I do full time work I get migraines and my fibro symptoms become really difficult to manage. Are you able to apply for disability grants? My friend in Norway gets a grant for her fibro
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I think they're separate to my fibro but related to the central nervous system sensitization that contributes to both. I'm sorry to hear you've struggled to access the pain clinic. I use private healthcare in ZA so it's a bit easier to get treatment, but there are fewer migraine meds available
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It's so frikkin difficult managing two painful conditions and the comorbidities that come with, I really empathise. I was diagnosed 14 years ago with fibro and was really hoping we'd have more solutions by now. My migraines started around 2022.
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It could also be worth looking into an alternative to codeine that has less side effects. Palexia has very few side effects for me (much less than Tramadol), but it's quite strong and you develop a tolerance. I might look into nerve blocks this year to try get my pain more under control.
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Have you looked at the potential that you're experiencing rebound headaches? It's possible when you use painkillers daily. The highest risk is opioids, but it also applies to things like naproxen. My neurologist thought that was the case with me (I'm on Naproxen (Vimovo) and Palexia.
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When I was on topiramate I had worse brain fog and pins and needles, and beta blockers made me really fatigued. But the main reason I failed most of the meds is because they wouldn't reduce the migraine frequency by much. Had a 2 month intractable migraine while switching meds
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For Aimovig, not really. You have to watch out for constipation though because it's the main side effect. For Trepiline 25mg, weight gain and daytime sleepiness. Otherwise no significant side effects.
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Glad to hear the Pizotifen is working! They don't seem to sell it in South Africa so I've had to go on Aimovig since Sibelium was discontinued here and nothing else works.
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Feel free to DM me if you have any questions about migraine treatments. I have chronic migraines and fibromyalgia
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I did think the Starlink rejection and the executive order were suspiciously close together.
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Tooth mouse in South Africa too, but some people use tooth fairy
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It's worth trying to email them again. I emailed for a press release and got invited to the event.
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I'm really sorry to hear this. Wishing you the best and hope you find something soon.
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Big shoutout to @jimjamfroo.bsky.social for helping make this happen
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Have you been to his room? There's a D&D table in it 😂 nerdiest emo boy
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If it's true & not just a perception, it could also be that with some issues we're fighting for our lives. For example, when someone says "not all men" to me, I get upset because it detracts from a conversation about GBV & assault. And I'm someone who has been assaulted and lives in fear of it.
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Check em out if you like alt rock. While I don't like every song, they have a bunch of really good ones that I listen to over and over (hence being in the top listeners)
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I wash my hands really frequently which, while seemingly a silly concern, is one of the reasons I've never really been excited by smart rings. Just seems inconvenient
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For two years in a row I've been in the top 0.5% of Badflower listeners 😅😂
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Machine Gun is the song that might the most thoughtful and 21P-esque so maybe give that a try too. Sorry for all the suggestions 😅
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I'm being the opposite of a technology journalist and yelling at changes to software like an old man telling kids to get off his lawn 😂
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To see if you like Badflower's vibe, I'd recommend these songs:
30 (sexual lyrics but very self critical)
Ghost (warning that it's about suicide though)
Johnny Wants to Fight (overall a fun song)
Drop Dead
They're definitely on the more rock side than Twenty One Pilots, but the songs are complex
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I specifically like Car Radio by Twenty One Pilots, so if you like that vibe (in my head I call it burnout) you might enjoy Badflower. Though they're more on the pop/rock/alternative side and their lyrics can be rude 😂
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When I do get a migraine, I use an over-the-counter medication called Migril. It helps control the nausea.
I can't promise it will work for you but it has really made a difference for me. I was also getting 2-3 times a week and now it's like once a month.
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So for chronic migraines, it's better to get a prophylactic medication. Epilepsy medication is usually prescribed but that didn't get mine under control. But a medication called Sibelium has really helped (it's pricey though). I also use Trepiline which seems to be helping too.
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Let me know if you want any migraine advice. I had chronic migraines for two years and still get them occasionally
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Now we have two massive unethical conglomerates to choose from.
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Apparently you can use the element blocker in Ublock Origin to get rid of it. I have yet to try it though