Sinéad

I promised myself this year that I would open up more about my chronic ill health, and to spread awareness on how little support there is for those that suffer vaccine reactions in Ireland. So here it goes, my vaccine injury experience so far.. 🧵

I absolutely love this video by @Dysautonomia It gives such a great explanation of what POTS is! If you haven’t seen it, please give it a watch and let me know what you think!

I didn't prepare much for #SevereMEDay, so I recorded this rather unprepared. I rant about graded activity/GET & how these treatments can cause more harm, adding more people to the severe M.E. category. There is some swearing & an angry cat. Be warned. youtu.be/NJt5Zxwqhhk?si…

Lauren 🕯 Loes 🕯 Céline 🕯 Sophie (Joyce) 🕯 💔 Those are four people from the Netherlands who had #severeME and died between this year's and last year's #severeMEday. Please add names. Because sadly there are many more. Let's remember them.

@rhirhiarhii Yeeees I've missed you too 🫂🥰

@spoonless_me Miss u I added u on Instagram ! Let’s be pals again 🤝🥰

Hello! 👋 How is everyone doing?? I haven't been on here much lately because methotrexate is kicking my arse, and I also can't stand this hateful AF app anymore. What are your backup apps if this place goes to shit? I've just set up an IG account under the same username and ⬇️

@himmatb15 I wish I could give you the biggest hug 😭🫂

I have nothing additional to say today other than the fact that I'm significantly worse than I was last year. The future is terrifying and I wish I could still tell myself that a miracle is coming, but it seems I'm slowly and painfully dying instead #VerySevereMEnow #SevereMEDay

@rhirhiarhii HELLLOOO 🤗

@spoonless_me HELOOOOOO

This was me when severe. I documented it with daily photos because I couldn’t write. I was expected to navigate Dr, DWP, employers etc whilst barely being able to open my eyes or say a few words. Left to my own devices when most sick. Unfair. Cruel #SevereMEDay #ME

@renesugar Thank you! I've a suspicion that my issue is possibly high homocysteine levels due to MTRR gene mutation. I have added an appropriate supplement stack to see if I can turn this around. 🤞

@spoonless_me MRP8/14 (serum calprotectin) test to check methotrexate response: calprotectin.co.uk/wp/wp-content/… gosh.nhs.uk/wards-and-depa… Red Cell Methotrexate Polyglutamates (eg. methotrexate being consumed by gut bacteria) synnovis.co.uk/our-tests/red-… x.com/renesugar/stat…

@ZebraLoveCo Oh, interesting! Do you have normal CK levels too? I was expecting to need a muscle biopsy, but my rheum was happy to treat based on my MRI. Best of luck with your appointment, I'd love to hear what the next steps are. There are so many seronegative patients in this community.

@spoonless_me So far I just have the blood test for JO-1 and chromatin antibodies. Very worried about getting a biopsy as I get a lot of fibrosis—about to see my rheumatologist next week so we'll see what she says!

I have officially been diagnosed with the autoimmune disease Polymyositis. My MRI showed evidence of symmetrical chronic disease in both thighs, which fits with PM. Treatment will be steroids and methotrexate. 🧵

@CiaraAnn6 Thanks Ciara Ann x

@spoonless_me Followed you on IG, sorry to hear you have had a setback. Dealing with Chronic Illness is soul destroying.

@fionangreg @mewarrior1 I followed you there ☺️

@spoonless_me Sky is blue as @MEWarrior1 Fiona Wood 😘

@briimii Thanks bri! Followed you back

@kirstler31 Thanks Kirst! 💜 I was hoping I'd get on ok with it but I've been getting worse every week and bloods are getting worse too. Bloods again next week to see if I need to change to something else x

@spoonless_me Ah sorry to hear that Sinead. I was really hoping the metho would give u a good boost. Hope things pick up for you soon. X

@PnoTuna Thanks Mike, I have returned the follow ☺️

@spoonless_me I've followed you there!

@phi_psd Thank you, I've followed back! 💜 This medication has thrown me about a year back in recovery 💔 but it's looking likely that they will change me to something else soon so hopefully I'll bounce back. 🤞 I hope you're doing ok x

@ZebraLoveCo Hi! Apologies for my very late reply. I'm sorry that you might also have this. Have you made any progress with your diagnosis yet??

@spoonless_me Just found out I might have the same thing also had normal ANA etc.

@super_catho Oh that's such a shame!! So sorry for not getting back to you, I haven't been on here in a few weeks. Thank you for sharing this, I was going to look into this if I didn't get anywhere with rheumatology.

@ThePOTSPostman GP: "You should go to the pub, you'll have too much fun to notice your pain." Medicine in Ireland. 🥴

What has been the worst advice someone has offered you on how to handle your chronic illness?