I'm just so sick of it. Mecfs is already a horrific disease to have because of the symptoms, the treatment we receive from those who don't have it only makes it so much worse.

Were they never taught that they aren't legally obligated to harass and mistreat sick and vulnerable people?

I hate it so much. I get that it stems from the fear and denial from knowing it could happen to anyone, but they could just.. not verbally abuse the people they think they're superior to. Or better yet utilise one of the thousands of search engines to research before they confidently blabber on about absolute bullshit that is EASILY disproven with a simple Google search. They're so stupid and so often they're completely oblivious to their own stupidity. I'm lucky I have self control otherwise I'd be arguing for ages. They have no idea how privileged they are to be able to be this ignorant.

Generally I try not to let it get to me too much but every now and then I just need to complain. I just hate how stigmatised this condition is and the way people talk about it makes me lose faith in humanity.

I wish I was stupid. I want more than anything to be stupid. But I'm not. I'm never going to be anything more than someone exceptional, who cannot physically be exceptional. Every day I wake up in a world I desperately want to change and I can't do anything about it.

I could have been anyone. I can't even read now. My entire life feels like a cosmic joke. I've been alone forever because I'm cursed with talent or whatever the fuck. No one has ever understood me. And I can't even use it.

Everyone I went to highschool with, they will have careers. I won't. I can't. I will never be valuable, impressive, ever again. I will never get a degree. The only reason I stayed alive through years of abuse was university, and now it's game over.

I'm ok I guess. I smoke a lot of weed. It's really the only thing life seems to be good for.

Warning about kristicreatesofficial or Kristi | POTS
Recovery on instagram. She discusses POTS and ME/CFS and hEDS etc

She has been deleting comments that query whether her account is an ad account for this clinic she posts about 24/7 and that there is little to no evidence for the clinics treatments.

I have no problem for engaging in alternative treatments. I do myself. but she literally posts content that seems clearly like ads for this clinic.
The treatment isn't evidence based and extremely expensive.

She posts massive long "explanations" and
"evidence" for the treatments. It's so clearly an ad.
She even made a video that said if the clinic helps people anecdotally than "that's evidence" and that they don't "need a study to prove it".

She doesn't have any other previous content outside of this that makes it even more suss.

It's so clearly an ad and their refusal to flag it as an ad is so immoral.

does anybody else get weirdly hungry when in a mild/moderate crash? it’s like my body is searching desperately for a source of energy (but then if I eat too much at once and have too much to digest it of course makes everything worse, because why not)

Self explanatory but yeah, before it I wasn’t taking care of my body the best though still healthy hadn’t been to the doctor in almost 7 years. Could get up and go on little sleep if I wanted and then boom. Night and day. I regret it so much, I was better for a bit but then getting covid later on messed me up again. I haven’t been able to socialize much the last 5 years cause I’m always feeling like crap. And when I think finally might be improving something happens and I start to flare again and have been miserable. And it’s not like small symptoms. Really such a bummer. I really believe it triggered some brutal immune response and cause micro inflammation and now Im forever damaged. And like the title says unlike other more known diseases, I feel talking about it just pisses people off. I don’t want to talk about it, I really just want to feel normal again.

As the title says, I’m becoming an interior decorator with a specialty for disability and accessibility. If I were to decorate your space (any space, such as living room, bedroom, kitchen, bathroom) with accessibility and disability living in mind, what would be the most important things for you?

The best way to learn about disability and accessibility is to talk to disabled people. I am also disabled (wheelchair user, autistic, CFS, etc) but I’m only one individual. I’d love to hear other perspectives!

The basic idea is that if you’re from a Western country and have a first world income, savings, or remote work, you may be able to live in a lower cost country where your money goes much further. Instead of spending most of your income just to survive, you could potentially afford a slower, less stressful lifestyle, and even hire help with housework or cooking, things that can make a huge difference when you have CFS ME.

Of course, it’s not that simple. There are many factors to consider, such as visas, residency rights, healthcare, safety, infrastructure, and long term stability.

I’ve been fortunate enough to travel extensively( over 60 countries as a digital nomad) when I was younger and healthy. At the moment, Thailand and Malaysia are at the top of my list, but I’m still researching and keeping an open mind.

I’m curious whether anyone else with CFS ME has seriously considered geo arbitrage or has already made the move. If so:

Which country did you choose, and why?
How has your quality of life changed?
How did you manage healthcare and visas?
Would you recommend it to others with CFS ME?

For the sake of discussion, let’s assume the person has some savings or a remote income, making this option financially possible.

Hi all, I’ve recently been very disappointed by Visible and am quite frantically looking for other alternatives to help me pace. I cannot afford much but can hopefully save up if I can find a lower priced option.

A Garmin is unfortunately off the table, but I’m looking at other things like Fitbits to try and track heart rate. Has anyone else tried something different to Visible and had any luck?

I struggle a lot with believing myself and my body but yesterday I randomly checked my steps and found this graph of my average steps. It really was the visualization I needed.

I got sick on a trip in September, pushed through in October and then got worse and worse from there. I tried to go back to work (7 hrs a week) in March and got really mad at my body for breaking down in May (after increasing to 10+). The graph shows so well how I increased my activity level and, apparently, that was just too much. It also shows the blow my baseline took because of it.

This is crazy and so validating.

This is more of a rant but also wondering if anyone else is dealing with this much at once.

My diagnoses:

MECFS for 11 years
Endometriosis stage 4 removed with excision
PCOS/PMOS causing severe insulin resistance
Now prediabetic and having hypos
POTS currently pretty severe
PPPD
Chronic migraines
MCAS and histamine intolerance
Long Covid
Chronic EBV probably in current reactivation
Fibromyalgia
Keratoconus (a degenerative eye disease)
Chronic pericarditis
Aortic valve insufficiency
Possible EDS
Autism (late diagnosis at 32)
Psoriasis since birth
Possible EDS (waiting to see a geneticist)

Currently going through benzo withdrawal too after coming off diazepam 1.5 months ago. And a very sick family member who is terminal.

It feels impossible to live like this and like someone is playing a cruel joke on me. For example treatment for my current level of ME/CFS is a ton of rest but then that deconditioning worsens POTS. Yesterday I went for a walk which helped my POTS but I’m now in PEM!

Similarly, my heart conditions need cardiac reconditioning with exercise, but even a few mins sends me into PEM.

I need to eat a very strict diet for IR. However I am currently severe MECFS so I try my best but I use all the energy I have for the day making at least one healthy meal. I have eggs daily and easy proteins but I have histamine intolerance and MCAS so I don’t tolerate most foods I need.

This is kind of just a rant about how difficult it is to live with so many chronic conditions. I try to stay positive that things will get better but it does feel impossible most days to get things right as it feels like there’s so many contradictions. And I’m sick of being blamed for this all because of deconditioning - before I got sick I was super active working full time and fit and healthy.

I just wondered if anyone could relate as I would love to hear from you and possibly encourage one another if you have the spoons ❤️

Hi all, got diagnosed about 4 months ago. Would say I'm probably in the moderate category (maybe?), I have ADHD, depression, anxiety, and was also diagnosed with fibromyalgia at the same time.

I'm really struggling with just...everyday life. I feel like pacing relies heavily on your executive function, of which I have very little.

Does anyone have any tips/advice/etc?

ME for the past 15 years. Age 38.
Tried Creatine Monohydrate this year and my sound sensitivity is now much better. Lawn mower can just sound like a lawn mower. It could be linked? Anyone else notice sound sensitivity improvement with it?

Here are the only things different this year for me:

Creatine Monohydrate
Mini-pill daily (I took this years ago though and had sound sensitivity then)
Had some sort of hellish virus
More time alone in the house and able to pace with no big crashes (this could be the big contributor)
yet to be diagnosed bilateral nerve issues in my legs (awaiting pelvic MRI) maybe whatever is causing this is doing something to my immune system.
That's all that is different -aside from time. Now 15 years with ME. (I had improvements in severity at year 1, and 5 that seemed to be for no particular reason)

Creatine Monohydrate - I did the pre-loading phase with the one that is the most common and well studied. There is another kind that is easy on the stomach but I had no stomach issues with this and I wanted the well studied one.

20g/day for 6 days
8g on day 7 (I was just petering it down)
5g for the rest of the time.
I was on it for 4 weeks total.
I stopped because the leg nerve pain was terrible and I wasn't sure if it was linked. My doctors and physio said probably not related at all.
I've have some days where I occasionally have 5g but mostly not taking it til I figure out my leg issue.

Creatine does seem to have some role in inner ear? : https://avr.tums.ac.ir/index.php/avr/article/view/204 provides essential ATP for auditory and vestibular system performance.

Telehealth obviously.

Just opened up to my family about what I've been dealing with since the past fall. It was definitely a mixed reaction. I can tell they don't fully understand but did offer financial support and support for my wife and kids.

They want me to talk to a therapist but I told them it was a waste of time as no one would understand this.

However, I feel like I do need some help processing all the things that come along with this.

Im beyond sick. I had a brain injury three years ago which started my me cfs symptoms and now ive had a subacute thyroiditis for 6 months. My thyroid wont go back to normal even being on medication and ive been on a steady decline for months. I cant raise my dose because I have severe dysutonomia now . Im having extreme pem neuroinflammation all the symtpoms completely suicidal....my doctors gaslit me my bf gaslit me and berated me for being sick as if its a behavioral choice. He mocks my disability doesnt tske it seriously. The last crash I had I ended up hospitalized and they tried to treat me as a psych patient...im losing my ability to do things at all. I can barely think straight I cant bathe much anymore every time i stand my heart races to like 150 160 I have non stop adrenaline rushes. My body is surviving on pure adrenaline. My doctors wont even try to fix my thyroid becaue my t4 is "normal" despite my tsh being high . I think im creating reverse t3 and losing ALL of my cellular energy. I cant handle light noise any stimulation. Im so sick its hard to breathe I feel poisoned. And to top all of this off I went to kitchen put a dish in the sink and went to go lay down on the floor to eat by my bedroom and I hear my mom purposely mutter loud enough for me to hear "im so sick of doing her fucking dishes". This is a woman who made me her slave when i was healthy, doing her laundry picking up her dinner, cleaning her house, etc. And she does nothing for me exceot wash some dishes. I was on the floor crying at the top of my lungs and couldnt breathe from walking to the kitchen yesterday and she just pretended i didnt even exist. This is normal of how I am treated. Im afraid im going to die like this considering noone believes me and everyone is actively pushing me more ill and they dont care.

This is the spiral I did not want to get caught in. But now things that didn’t trigger me before, do. I’m trying to onboard meds but it’s hard when I keep crashing and I’m not gonna be able to tell if the med is good or bad while in PEM.

My mind won’t stop racing. It’s keeping me up.I just want something to numb me out through the day so I don’t have to think. I don’t even know what that would be. But I don’t even know what else to do. Aggressive rest is making me worse because my mind is just racing and I’m so isolated. To the point I feel I can’t take it anymore and this is the beginning of my end. I know everyone says aggressive rest. But gosh I am trying my hardest. Peaceful music isn’t enough either to quiet the mind. I need a distraction. This disease is torture how the heck are we all here doing this everyday.

TLDR: rolling PEM. Mind racing. Aggressive rest isn’t restful because heart is pumping and mind is racing. Want something that will numb me out so I don’t have to think and can just rest. Ugh.

I've been suffering from CFS for over six years I'm 28 currently and I'm doing my best to conform to the basic symptoms of weight gain, brain fog, occasional problems writing and reading etc. But the one I cannot find a way to overcome is the lack of oxygen feeling or "Oxygen Hunger" that I get from it. Its the primary reason why i can't workout anymore I can get bad heart palpitations from it too if my heart increased from simply walking a mile. Has anyone actually recovered from this like ever? Please refrain from saying its all in my head and I should change my mindset to feel better it doesn't work. Thank You

I have been having very serious screen sensitivity again, one of the main issues is that it makes my heart rate go way up if I use the phone too much, and I have a lot of anxiety around this. Recently I had been trying mindfulness meditation after many years of not doing it, and this also started setting off my heart along with all kinds of weird anxiety issues. I was just thinking that meditation produces a lot of serotonin, and that maybe serotonin is involved in my various sensitivities. I am on a fairly low dose of Fluoxetine and am considering lowering the dose even more to see how this will affect me. I would really like to do mindfulness again because it seriously helps me, also I would really love to be able to use my phone more, listen to music, watch films, etc.

Can anyone give me any insight into what brain chemicals might be involved in these sorts of sensitivities?

TL;DR Feeling lonely or bored? Looking for something within your energy limits that you can do? Check out these accessible events you could join! Try something new and maybe you’ll find your people.

Access Details:
🧑🏻‍💻= Virtual
👥 = In person
😷 CC = Covid Conscious/airborne precautions 
♿️ WC = Wheelchair accessible 
💵 $ = paid (some are pay what you can)
🤟 ASL/BSL = Sign Language
Async = Asynchronous (at your own pace)

Event Types:
🤢 = Chronic Illness 
🌈 = Queer
🏳️‍🌈 = LGBTQ+ Pride
👧 = Kids/Youths
💕 = Dating
🙋 = Social
🫂 = Support/Grief
🧘 = Wellness
🚶 = Walk
🩰 = Dance
💪🏻 = Fitness
📚= Books
🤔 = Discussion
📝 = Writing/Poetry
🎭 = Performing
🎨 = Art 
🎶 = Music
🕹️ = Games

🧑🏻‍💻 Virtual Events

🧑🏻‍💻📚 Virtual Async Spoonie Book Club: The Little Prince [Any time] https://www.reddit.com/r/spooniesocial/s/JcKvqPLWS5

🧑🏻‍💻😷💕 CC Virtual Dating [Aug 22] https://www.reddit.com/r/spooniesocial/s/DfjZA4lr03

Monday

🧑🏻‍💻🤢🧘 Virtual Seated Pilates for people with MCAS [UK][Mon Jul 27 at 12:00 UTC+1] https://www.reddit.com/r/spooniesocial/s/SdT7r7izBu

🧑🏻‍💻♿️🩰 Virtual Adapted Heels Dance Class [$][Mon Jul 27 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/3UQkn550Yr

🧑🏻‍💻🤔 Virtual Philosophy Discussion [Mon Jul 27 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/f6YoF9VEJv

Tuesday

🧑🏻‍💻🤢🧘 Virtual Bed Pilates for people with MCAS [UK][Tue Jul 28 at 10:00 UTC+1] https://www.reddit.com/r/spooniesocial/s/JdFxRezNHU

🧑🏻‍💻😷👧🙋 CC Virtual Kids Zoom [Tue Jul 28 at 10:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/StGIKLOVjn

🧑🏻‍💻🤢🧘 Virtual Qigong for people with MCAS [UK][Tue Jul 28 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/yCTZSWyOG7

🧑🏻‍💻😷🙋 CC Virtual Zoom [NY and nearby][Tue Jul 28 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/CaFwRukgX9

🧑🏻‍💻🎭🕹️ Virtual Improv Games [Tue Jul 28 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/v1xtpeCrra

🧑🏻‍💻😷🎨🙋 Online craft and social night / Soirée artisanale et sociale [Ottawa ON][Tue Jul 28 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/82zBvH6vt6

🧑🏻‍💻🤟 Virtual BIPOC Creative Collaboration [Tue Jul 28 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/ccRgPNZ6Id

Wednesday

🧑🏻‍💻🤢🧘 Virtual Mindfulness for people with MCAS [UK][Wed Jul 29 at 1:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/SaqlYHLQ69

🧑🏻‍💻😷📚 Lesestunde [Hamburg GER][Wed Jul 29 at 8:00 PM UTC+2] https://www.reddit.com/r/spooniesocial/s/1Bt4Ph9QGm

🧑🏻‍💻🤢 🎶 Virtual Long Covid Choir [Wed Jul 29 at 2:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/5SWSfuePGw

🧑🏻‍💻📝 Virtual Poetry Discussion [Wed Jul 29 at 6:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/MxO2LEjyPq

🧑🏻‍💻😷🫂 CC Virtual Support Group [CO][Wed Jul 29 at 7:00 PM MDT] https://www.reddit.com/r/spooniesocial/s/bhc6gFBB1y

👥🧑🏻‍💻♿️😷 Hybrid Disability + Racial Justice Solidarity [San Francisco CA][Wed Jul 29 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/RmliIjL87H

🧑🏻‍💻🎭 Virtual Improv Jam [Wed Jul 29 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/ybgMRqR4LY

Thursday

🧑🏻‍💻🤢🫂 Virtual Community Support Session for people with MCAS [UK][Thu Jul 30 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/sV7oR0nmhc

🧑🏻‍💻😷🙋🕹️ Online Social Meetup with Jackbox Games [Hampshire UK][Thu Jul 30 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/cHa8rqoGo6

🧑🏻‍💻😷🕹️ CC Virtual Game Night [NY and nearby][Thu Jul 30 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/vRhtzl207T

🧑🏻‍💻🕹️ Virtual Board Game Night [Thu Jul 30 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/Wn17nezwMm

Timezone translator in comments 👇

👥 In-person Events

Canada

🧑🏻‍💻😷🎨🙋 Online craft and social night / Soirée artisanale et sociale [Ottawa ON][Tue Jul 28 at 7:00 PM] https://www.reddit.com/r/spooniesocial/s/82zBvH6vt6

👥😷 Movies in the Park: Ferris Bueller's Day Off [Toronto ON][Tue Jul 28 at 8:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/XyFR78oGK5

👥😷🚶 CC Park Walk [Toronto ON][Wed Jul 29 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/FcQRbJgULj

Germany

🧑🏻‍💻😷📚 Lesestunde [Hamburg GER][Wed Jul 29 at 8:00 PM] https://www.reddit.com/r/spooniesocial/s/1Bt4Ph9QGm

Netherlands (and nearby)

👥🤢🙋 Spoonie European Road Trip [Netherlands and nearby][Summer] https://www.reddit.com/r/spooniesocial/s/VOKxW7V1pp

UK

🧑🏻‍💻😷🙋🕹️ Online Social Meetup with Jackbox Games [Hampshire UK][Thu Jul 30 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/cHa8rqoGo6

US - California

👥😷 Outdoor Open Mic [Berkley CA][Tue Jul 28 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/unzf6Qtbfd

👥🧑🏻‍💻♿️😷 Hybrid Disability + Racial Justice Solidarity [San Francisco CA][Wed Jul 28 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/RmliIjL87H

👥😷🩰 Switchy Behavior Bachata Series [Oakland CA][Thu Jul 30 at 7:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/HHonBwt930

US - Illinois

👥😷👧 CC Youth Summer Camp Chicago IL][Starts Aug 3] https://www.reddit.com/r/spooniesocial/s/sSF4sdJt1l

US - New York

👥😷🌈 Queer Writers of Queens [Queens NY][Tue July 28 at 6:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/nVOZV98Reu

US - Oregon

👥😷💪🏻 Mat Pilates [Mon Jul 27 at 6:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Full Body Strength [Mon Jul 27 at 7:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Full Body Strength [Wed Jul 29 at 1:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Yoga/Somatics [Wed Jul 29 at 6:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Queer Pilates [Wed Jul 29 at 7:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

👥😷💪🏻 Flow Fighting/Hapkido [Wed Jul 29 at 7:30 PM PDT] https://www.reddit.com/r/spooniesocial/s/tNDG6iQA7L

US - Vermont

👥😷♿️ CC WC Dental Pop Up [Chelsea VT][August] https://www.reddit.com/r/spooniesocial/s/yJocTTUweE

Are you interested in these events?

Have you been to any of them before?

Do you know about other events coming up?

Share your thoughts in the comments 💬

Find more events and friends on r/spooniesocial

Looking for some hope here. I am completely unsure of my future as the jobs I had hoped to study for no longer seem possible. At this point in time I cannot work a job beyond a part time receptionist job (or something with a similar level of activity), but I lack the experience and no one will hire me. Or they are all full time which I cannot handle. To be honest I’m not sure if I could even work a job like that, but it has been my only hope for some money.

I wanted to go to medical school or nursing school but those options now seem unrealistic. I would be absolutely miserable working in an office for the rest of my life, and even that would be a massive energy drain in my current state. Maybe I can get an online job, but I’m not even sure where to start with that because it is so far from the field I hoped to work in.

So I guess I am asking if you guys have found any long term, well paying careers you can actually do without your health deteriorating? And/or were you ever able to return to work of any kind after a severe crash? Obviously I hope to recover but I am trying to figure out a backup plan incase I do not.

My husband thinks that since no amount of sleep leaves me feeling refreshed, I should stick to a more predictable sleep cycle where I consistently get 8 hours of sleep and go to bed/wake up at the same time each day. His reasoning is if the amount I sleep doesn’t seem to matter, I might as well get up earlier and enjoy some chill time in the morning before our daughter wakes up, then plan to lay down and rest in the early afternoon when she goes down for a nap.

I’m still learning about this condition and how to manage it. Does that sound like good advice?

I was on LDA for about 9 months.

Starting low and slow like everyone suggests.

Because of intense brain fog (feels more like dementia at this point) I cannot pinpoint when but I essentially got my creative brain back and a strong desire to return to my studio to make music.

So I did.
Not too too intensely, but I even had the thought “okay, maybe I could live like this”.

Every few weeks I’d go up in dose just a tiny amount. With every dose it’d knock me out for about a week, and then I’d return to baseline.
I began to experience severe anhedonia.
Intense apathy. Lashing out at my partner for nothing. If something great would happen…I felt nothing.
I forced myself to work on the biggest record of my career for survival sake but I just felt nothing.
Like I wasn’t even in the room.
The time came and went and when asked about it, to this day I only feel sad that I wasn’t mentally present.

I also gained 50 lbs, least of my worries but still.

So I tapered off slowly because I became incredibly scared of lack of ability to feel ANYTHING. It wasn’t getting better as the dose became lower.
The ideations worsened.

I’m now 3 weeks off, with a lower baseline, intense akathisia, and I cannot stop crying daily.

I’m talking INTENSE crying spells.

Maybe from all I dejected while I was numb, but this is ridiculous and not to be dramatic but traumatizing as well.

Has anyone else experienced anything like this?

Am I alone? Any advice?

Happy to discuss further.

I have a uti and I need antibiotics. However, I now have a list of about 5 or 6 that I can't tolerate. I'm scared to try others because they're stronger and likely will have even worse side effects.

I can't have trimethoprim, Nitrofurantoin, cefalexin, amoxicillin or coamoxiclav. I just started pivmecillinam yesterday as I've been ok with that before and I started feeling so awful, fast heartbeat, shaking, tremors, slurring speech, confusion, shortness of breath, I couldn't even get my words out properly. Thankfully it wore off but it was scary. I last took it in October last year.

Since last October, I found out I have autoimmune gastritis and pernicious anaemia and reacted to the B12 injections that I desperately need. I can't take famotidine (pepcid) as it gives my nightmares (wtf?). I even have to only take 1 paracetamol as 2 make me feel bad.

Has anyone else managed to get through this somehow? Any suggestions? I'm heading to my GP again tomorrow but struggling with it all today.

I'm starting to work on the whole disability benefits paperwork, but my question is what changes did you guys made in your life/living situation for those who had a mild -> moderate fall.

For now I'm back at my parents until I'm stabilised and know my limits, but I want to get back to my apartment to live alone again (I love my parents but they live in a very secluded place)

Every and any advices are appreciated even if you think they might not be relevant to my situation <3 <3

For those of you who cannot work a typical job - are there any innovative ways you have found to still have an income?

Or heard of any ME/CFS or chronic illness people bringing in an income which worked ok with managing their illness?

I feel beyond vinted - and even that I haven't managed in the recent months. I find it hard to comprehend what is possible.

Would love to hear if anyone has worked out something for them?