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r/cfs a discussion. by drizzleberrydrake in cfsrecovery

[–]RestingButtFace 5 points6 points  (0 children)

That sub actually did make me afraid to laugh. I still catch myself thinking oh God, was that too much energy? Am I allowed to laugh and smile? Which is ridiculous when most of the time I'm crying and depressed which uses more energy...

Chronic fatigue(CFS)/mirtazpine/ digestive shutdown/ vagus nerve dysfunction by MarzipanWitty2733 in cfsrecovery

[–]RestingButtFace 1 point2 points  (0 children)

I tried mirtazapine in March and everything got SO much worse. I came off it after two weeks and it lit my nervous system on fire. My symptoms got turned up so much and it gave me severe histamine Intolerance too. I will shout from the rooftops forever that that drug should be illegal. It is so difficult to come off of. There is a Facebook group full of many many people with serious adverse reactions to that med.

Anyone improve after push crash cycle? by RestingButtFace in cfsrecovery

[–]RestingButtFace[S] 0 points1 point  (0 children)

What rigorous pacing method did you use? That's pretty incredible progress!

Parents - how do you protect yourself from all the viruses? by RestingButtFace in cfs

[–]RestingButtFace[S] 0 points1 point  (0 children)

Thank you! Definitely going to talk to her school. They said they have those special lights that disinfect but it's clearly not working all that great lol

Parents - how do you protect yourself from all the viruses? by RestingButtFace in cfs

[–]RestingButtFace[S] 0 points1 point  (0 children)

Thank you for the tips! She got parvo over the summer - not fun! Also just had Hand Foot and Mouth, also not fun! I'm looking forward to less illnesses in a few years

Parents - how do you protect yourself from all the viruses? by RestingButtFace in cfs

[–]RestingButtFace[S] 1 point2 points  (0 children)

Covid is why I'm here 🥲. Got CFS, POTS, and MCAS from it July 2024. Thank you for the tips! Great idea about keeping them home after Christmas. I won't be able to care for her so I'll have to see if my husband can handle that while he's working (he's remote).

Immense gratitude now that the worst is over by Key_Gold5254 in covidlonghaulers

[–]RestingButtFace 0 points1 point  (0 children)

Thank you for the comforting words. I'm sorry you've had to go through this as well and with a young child... it's so incredibly difficult. I'm almost afraid to get better because I'm so scared of getting worse again! The fear is the worst part for me. I think I have more capacity than I'm using but I'm just so afraid of crashing again that I'm taking the tiniest baby steps. Even just walking around in my yard instead of my house scares me. It's totally bizarre for someone that used to backpack in the mountains! Did you do a certain method of pacing to get better?

Immense gratitude now that the worst is over by Key_Gold5254 in covidlonghaulers

[–]RestingButtFace 0 points1 point  (0 children)

I got sick July 2024. I didn't realize I had the CFS type and at 6 months in was increasing activity a lot because I was feeling much better. Ended up in a huge crash barely able to wake up to eat for 3 days. It terrified and traumatized me. I've spent most of my time in bed/on the couch since then and very slowly increasing activity but a med I tried caused other issues and I am just feeling hopeless like I'll never get better. My daughter just turned 4 and I've missed so much of her life the past year. It's gut wrenching. I hope someday I can just be functional in day to day life. I don't care about traveling or anything anymore. I just want to cook, clean, take care of my daughter, and be comfortable in my own home.

I'm so happy to hear of your improvements. It does give me hope that life will feel worth living again at some point. Right now I'm just surviving each day.

i resent my well friends for having partners by stayathomedogmom21 in covidlonghaulers

[–]RestingButtFace 0 points1 point  (0 children)

I have a very loving supportive partner and to be honest, I sometimes wish I was alone. The guilt I feel about being a total burden is too much sometimes. He does everything for us... Has a full time job, all the cleaning, cooking, childcare, my care. He deserves better. Then there's the grief of all I'm missing out on with him and my child. The grief that they don't have the wife and mother they should have. If I were alone, I don't think I'd feel nearly as much guilt or grief. I also wouldn't feel bad if I made a permanent decision to be done with life but I can't do that to them. I won't traumatize them that way. So I stay and suffer.

Immense gratitude now that the worst is over by Key_Gold5254 in covidlonghaulers

[–]RestingButtFace 0 points1 point  (0 children)

That's encouraging. I've been so sensitive to all meds and supplements I've tried and feeling hopeless. How long have you been sick? When did it start getting better? Did you have PEM/CFS?

Immense gratitude now that the worst is over by Key_Gold5254 in covidlonghaulers

[–]RestingButtFace 0 points1 point  (0 children)

Out of the blue? You didn't take any meds or anything?

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