r/cfs

Thank you all for being here

It can feel so lonely; alone in my bedroom all day every day. And this sub reminds me that I’m not alone and that we are connected with each other all over the world

Even when we don’t feel it, we really are

🩷🩷🩷🩷

Just choose a random job. Bob is an accountant.

• “This is the new accounting software.”
• Bob: “Pass. It wasn’t covered in university.”
• “Here is the manual. And testimonials from thousands of users.”
• Bob: “Hard pass. I’ll stick with the old software.”

In any job, this would be seen as incompetence, Bob would probably be fired.. Now replace “accounting software” with ME, and “Bob” with doctors...

it's been years but i still miss her. i had a pygmy hedgehog. she was adorable. but i was struggling so much to change her water and food, cleaning her tank out especially, and my family wouldn't help.

at the time, my POTS was also unmedicated and not taken seriously. i often fainted from cleaning the tank, standing by the heat lamp, and kept being told to "stop huffing" every time i was sorting her out (i felt like i couldn't breathe).

i had to beg for months to rehome her. she deserved so much better. i lost all contact with her and never saw her again. i don't know who she went to. i think she would be dead now.

i don't really know why it's hitting me now. i don't think i really grieved about it when it happened. i just really miss her. i loved her. i'd love to have a pet hedgehog again but i justthfhf ahh :((

i just keep seeing how much this illness has taken away from me. i barely experienced school. i only lasted maybe 2 terms max in college. i'm missing out on university now... i hate it.

No drinking. No smoking. Strict sleep schedule. Strict food balance. Sticking to the certain way of thinking. Meditation. Patience. Limited social contacts. Avoidance of almost all modern entertainment such as videogames, porn, loud and aggressive music, parties, thriller movies, phone usage and overall content consumption. You need to quit everything that can make you tired mentally of physically. Be better as a person. Be ideal to your disrupted mind and tortured body. Stick to one idea. Like buddha monks trapped in modern society that doesn't care you're ever existing.

And maybe then - just maybe - you have a chance to feel yourself slightly better.

And the worst - seems like you don't have much of a choice. What a purgatory, man.

(Post has been cleared with mods)

Hi Everyone,

My team recently launched a new symptom/med tracker aimed at folks with chronic illness.

While the response has been good so far, we realized that our app store screenshots need a lot of work & it just isn't something anyone on our team really has the skills for. So we are currently looking for a graphic designer to redo our app store screenshots.

We posted on upwork but would rather hire someone who has personal experience with complex chronic illness if possible. (I have ME/CFS & POTS and our other two team members are very familiar with the realities of complex chronic illness as well.) We are currently offering $250 to redo the screenshots and are open to discussing logo redesign and/or getting advice on the general app color scheme as well as an additional project. While the job is currently listed on upwork we are also open to doing it just via paypal or similar.

These are the current store screenshots (we know they look rough, we tried...):

https://preview.redd.it/xxpbsjwopfug1.png?width=802&format=png&auto=webp&s=0b2ed0148c4b0a4edd239af5c6e4179443103c40

Feel free to message me & share any relevant work.

Edit: I'm getting a lot of messages from people who seem like they might just be bots searching for job listings rather than people who are actually part of chronic illness community so if you message me maybe confirm you are part of chronic illness community not a bot searching for job listings.

The upwork listing is here:

https://www.upwork.com/jobs/~022039101361857748891

(if you reply via upwork mention that you saw the r/cfs post so I can prioritize people from here)

Full text of the upwork listing:

We are looking for a designer to redesign our app store and google play screenshots (phone & tablet for both) & hero image to make them more cohesive and professional. App is a health app aimed at users with chronic illness and has a clean white background with a mostly pastel color palette.

Currently the colors of the screenshots and logo feel a bit chaotic & amateurish overall. We want to redesign the screenshots to something that looks good with the app. We might also need to redesign our logo, we aren't sure an this one and are open to input. Looking for a design that feels calm, premium, and distinctive in a crowded market.

To apply

- Start your proposal with the word "chronic" so I know you read this

- please share screenshots you have designed for apps with a similar color scheme or for a similar market.

-Please show examples of "spanning" or "panoramic" layouts.

- Confirm you can provide the full suite of sizes (iPhone, iPad, Android Phone, and 7"/10" Tablets).

Current screenshots look like this (we know they are rough, we tried):...

I have so much respect for everyone here who is dealing with severe or very severe ME and still manages to get through the day, week after week, month after month, and sometimes for years on end.

It’s getting harder and harder for me, and I don’t feel any bright spots anymore. I can’t do anything at all during the day, and it’s driving me crazy.

I don’t hope there are many more days ahead for me.

Hi folks,

I'm new to the community and just thought I could share a few items that help me daily, in case they might help someone else. Of course, you likely know about most/all of these, but I'm hoping one or two things might be useful.

• Compression socks - can't go without them
• Pink/FL-41 glasses - they really help me with fluorescent lights
• Noise-cancelling headphones - noise affects me so much
• Cane
• Shower stool
• Heated pad
• Ice packs
• Weighted pad - for anxiety, much lighter than a full weighted blanket. It actually doubles as a heated pad.
• Projector - more gentle than a computer screen
• Compression shirt - it really helps me to stay calm/regulated
• Artificial tears - for dry/itchy eyes

I would love to hear about any tools you use that help you too!

”Im praying for you” first of all, neglect (at best.) from christians is a big reason i got this bad. I also need money more than prayers. AND these people are only helping me in the hopes i return to their church

Is this request okay? I dont know if its too much of an ask or even how to go about it.

Seriously, sick for more than a decade, at this point I don't even try to explain how I'm doing or what it's like to people. I'm lucky to have some family members who help me with different things and some old friends I'm still in touch with, but I've come to a point where it just feels like this illness is too specific and bad for remotely healthy people to even begin to comprehend. It's extremely, intolerably lonely, but not as lonely as I feel when I'm around other people. Are we just incapable of empathy about certain things?

I really struggle to feed myself, because I'm in bed most of the time, and standing in the kitchen for too long is very painful. As a result, I have ordered more food delivery than I can realistically afford.

Here's whatI have started doing:

-Pan sheet vegetable meals (yam, broccoli, mushrooms, carrots)

-Keeping fresh veggies in the house for snacking with ranch dressing

-Drinking Ensure as meal replacement when I am too tired to cook but that still leaves me craving food

What are some easy to make, healthy, affordable meals?

Hi 👋

I hope it’s okay to post here as someone without CFS.

I wanted to say that even though I can’t fully understand what you go through on a daily basis, I see you and I respect what you’re carrying.

I wish you nothing but the best and I hope gentle things come your way.

🫂❤️❤️

Necesito ducharme, pero también necesito ir a la farmacia hoy. Tengo que elegir....

No lo escribí yo. Lo leí en un post cerrado. Creo que describe brutalmente lo que hay. A mi me da mucha depresión. Porque esto significa que NADA más puede ocurrir en tu vida. No pareja, no viajes, no amar, no comer ni beber fuera de casa, no trasnochar, no conciertos, no cine, no trabajar... no no no no... y para qué seguir?????

im struggling to find this described anywhere in literature or in posts online. maybe someone knows what this is or has experienced it.

\- occurring the last 15 years

\- Can experience no sleep up to 4 days unmedicated

\-Occurred before I was medicated, can occur in extreme exhaustion, occurs with sleeping meds

\-Can be sedated for hours (various sleep meds over the years) but I dont fall asleep until I am hit with this sleep tsunami

\- I feel extremely unwell when this occurs, I am virtually non functional, its feels like I am being pulled/falling, I immediately try to go with the wave and get comfy. I am usually asleep within seconds

\- If I dont go with the wave (very short window) I could be hours waiting for another wave to hit

\- its very to interrupt it, for instance if I need the bathroom

I hope Im not the only one. I have mecfs and POTS

While i still go to the regular toilet for bowel movements i have saved so much energy just having a bedside commode these past few days. I asked here for support on getting used to it and if it would actually help etc and im so glad i was able to get used to it. Thank you all. I love this community

It's so funny to me that even in my dreams I am sick. I didn't have this problem before my diagnosis, but now I am scared of PEM even while dreaming. Maybe it's my brain finally realizing that I am sick.

Last week I had a dream I went skiing, I caught covid on a ski trip and I always told myself that if I ever recover I would go to symbolize it. It's been six years, I am 21 now.

In my dream I was dancing, skiing ofc. But I remeber also talking about the whole thing like it was in the past. I said to people that it took me 9 years to get better. I was 24 in this dream

So I guess 3 more years to go, it's not so bad.

I will give u an update in 3 years, who knows, maybe that dream will come true, I sure hope so!

Salut tout le monde,

Je suis gravement malade depuis un an et mon état s'est considérablement aggravé (apres blocage du ganglion stellaire rate…). Bref, je suis désespérée.

J'ai finalement accepté de commencer les immunoglobulines intraveineuses (séance obligatoire à l'hôpital au début du traitement en France) sans avoir fait les tests GCPR, etc. Ma première séance est dans deux semaines. Je peux encore annuler.

Deux problèmes :

• Le trajet : 120 minutes aller-retour. L'ambulance, ça va, on est allongé, mais vous savez, quand on est gravement malade, je ne sais pas pourquoi, même allongé, etc., on a quand même des PEM…

• Mon corps ne supporte rien. Il ne supportera pas les immunoglobulines intraveineuses au début, c'est certain. Je peux encore parler, me lever pour aller aux toilettes et utiliser mon téléphone. Je pourrais tout perdre…

Y a-t-il d'autres personnes atteintes du syndrome de fatigue chronique sévère qui ont tenté IVIG ?

Je lutte à chaque instant, mais je veux vraiment essayer. La dernière fois (ganglion stellaire), ça a été un désastre…

My life up until this point had been super turbulent to say the least so I've not finished a single degree. When I finally got stable and happy and thriving I got sick :/. I made the hard decision to drop out today & I am pretty heartbroken cuz I pushed myself so hard the first 6 months, I was a straight A student & I was doing so good. But since January I've been in a bad crash and lowered my baseline together with insanely debilitating brain fog.

I am so heartbroken over the fact I can't finish my studies right now, especially cuz it's something I love so much. I feel like a useless part of society & I know cognitively that's not true but I don't know how else to feel right now. I don't have a degree even though I am cognitively capable and I don't have the capability to work either. I had big dreams and I was also the expected gifted daughter but instead I am sick.

It's so hard to deal with grief but I also feel relieved. I don't know. How do y'all deal with this?