Himmat

Writer and editor. Life derailed by Long Covid/vaccine injury. Very severe and fully bedbound. ME | hEDS | POTS

[Himmat @himmatb15]

I miss:
- sitting
- standing
- walking
- showering
- talking on the phone
- reading
- thinking
- living
#severeME

[Himmat @himmatb15]

@rhirhiarhii Happy birthday love ❤️

[Céline @healingfromlc]

My cognitive decline is so severe that I think I would probably qualify for a dementia diagnosis now. It makes me so sad. It’s been going steeply downhill since I had the CT contrast. I don’t even recognize myself.

[elle carnitine 🍉 @elle_carnitine]

Does anyone know of any document by an ME charity/organisation/clinic that mentions the fact that people often already experience some symptoms before they fully develop ME?

This could include the 'multiple hit' theory for instance

[Antoine 🇫🇷 V.Severe MECFS @AntoineMECFS]

For those in Germany who tested positive for GPCR AAB, did you do anything after that/accessed any treatment ? Did that help ? I'm living near the border and want to try a desperate thing, I'm positive to M2 and B2 Aab. The new study convinced me. Any doctor that would accept to consult a French patient,ideally that speaks English or French ? Thanks for your help #MECFS

[Jack | amatica health @JackHadfield14]

People don’t realise how much you can lose and still have to live every hour.

I’ve lost walking, my brain, normal vision, friends, food, music, love, career, hobbies, sunlight, sleep…

I can’t even grieve it without getting sicker.

Disease takes more than you realise you had.

[Broden 🇬🇧♿✝️ @Gavtaraysin]

Please can people consider giving @rhirhiarhii a donation or reposting her page.

She does so much for the community and is daily highlighting people's donation pages, and helping people irl get help from doctors. All the while trying to pay her own bills and supplements.

So please help our friend Rhi 🙏
https://t.co/7z1QHLLO1L

PayPal is [email protected]

[sean stidston @seanstidston]

Has anyone come off triple therapy and they feel like they’ve got a new infection ?
Burning up, nausea, head pressure, vision more blurred, but burning etc.

[*Slaps dick* comedy @hiimchiralkthx]

anyone got a good therapist that knows about BPD/NPD stuff and chronic illness and uhhhh trans stuff and autism and adhd and idk masks and doesn't cost 200 dollars a session.

looking for a friend that is me

[a tired human @saffronandsky]

Hey folks, I'm reaching out to see if we might find someone to help a young woman I've been in contact with whose life if in danger due to a dire medical situation and not receiving proper care.

She has very severe MCAS, MECFS, Lyme disease, CCI, IIH and possibly other issues. For the last year she has become dangerously malnourished due to inability to swallow and keep down food (ineffective esophageal motility) and severe reactions to all foods.

She recently got a peg-j tube, but her severe MCAS reactions (difficulty breathing, difficulty keeping formula down, severe itching and burning, rashes, severe GI pain, etc) to formula mean that she still cannot get sufficient calories.

However, instead of exploring alternatives such as tpn or hypoallergenic formulas, the hospital is treating this issue as psychiatric and says she doesn't have MCAS and sending her home. She's also losing vision, having intermittent full body numbness + heaviness/weakness, brain fog, seizures, dizziness, painful eye bulging and more.

After suffering severely for so long and having multiple hospitals refuse to take her issue seriously, she's considering going home to die. Unfortunately, she does not have supportive family or friends to advocate on her behalf.

I am very severe myself and have limited ability help but I've been wracking my brains trying to figure out who might be able to help because I can't just stand by and watch her die.

She is in Tennessee and if you have any ideas if you could contact her @sadfoxqueen

Thank you so much! Also, please tag anyone who can spread this message or may have connections!

[Tara F, PhD MPH @TaraFotiPhD]

I have a teen w/ LC/ME who hasn’t been to school or interacted with anyone outside of our household (or healthcare team) in months. As you can imagine, he is desperately lonely. How do I connect him with other housebound teens?

Please help. I fear the situation is getting dire.

[The impatient patient @HalfThePerson]

Can confirm, Omalizumab (Xolair) removed hyperadrenergic character of my dysautonomia (adrenaline dumps with spikes in HR, dBP, intense feeling of doom, agitation) and majorly improved unrefreshing sleep, both secondary to MCAS

Was unable to control MCAS even with 8x H1 daily

[Emily Johnson (is on Mastadon and Bsky) @emily_rj]

Neurosurgery update! Please read, donate, share

Good news: I’m approved for 2 more major lifesaving surgeries

Bad news: There’s more physical damage, surgeries are costly & not covered in full by Medicare, I need more donations for this lifesaving care

https://t.co/lts1LL4Qnp

[Himmat @himmatb15]

@Squashedhedgi @Naomi_D_Harvey Would you describe the vision from that eye as blurry? And does it come and go?

[Himmat @himmatb15]

My vision out of my left eye has become very fuzzy since my recent decline. It was kind of fuzzy already but much worse now. It's also always watering and by the second half of the day it's extremely sticky tears that irritate the skin and the eye also swells up. Any ideas?

[Himmat @himmatb15]

This is where my search for a new doctor always begins and immediately ends.

[Rhi @rhirhiarhii]

“Can you come into the clinic for more testing”

Do you even understand my level of illness dr ?

[Himmat @himmatb15]

I literally can't read anything anymore if i cover my right eye and only look from the left. It's been many weeks now. I'd be freaking out but i really can't afford to. My left eye has always been the weirdest when it comes to illness related vision issues. For

[Kirst @kirstler31]

1) 🧵 I’m really curious if anyone else experiences the same sensation as me - when I say I feel different intensities of crashing/PEM/poison every single day, this is what I mean - it feels like a wave of something completely toxic and death-like that runs up my chest and sort

[Lou @plagueprose]

are people really seeing benefits from low dose glp-1s for long covid/mcas? I’ve been exploring it for endometriosis as well but I’d love any anecdotes to help

[Himmat @himmatb15]

So envious of people whose nervous systems let them trial medications :/

[Himmat @himmatb15]

@rhirhiarhii Yes very often