Having #fibromylgia today is like: trying to get all my important shit done before the storm comes in and replaces my brain with fog and fatigue

After years of searching I finally found a #bra that doesn’t hurt. No underwire. No itchiness. No pain in my shoulders. People with #pain #migraine #fibromylgia #mecfs #chronicfatigue might benefit from this. It’s even better than cotton camisoles, my prior only choice. https://www.amazon.com/Calvin-Klein-Invisibles-Adjustable-Bralette/dp/B07798L2QL/ref=mp_s_a_1_4?crid=2PJBIMGZOGA5O&keywords=calvin+klein+bra&qid=1689787940&sprefix=calvin+klein%2Caps%2C159&sr=8-4

#NEISvoid #fibromylgia #longcovid

I don't know what to d,o or to say.

Or even how to support her.

I guess all I can do is to cry out into the wind.

#NEISvoid #fibromylgia #longcovid

It's funny, as my health collapsed, she walked away because she didn't sign on to be a carer, and yet, what she is demanding...

The irony.

And I can't move, and she doesn't believe or accept that.

So after all the hell I am going through with my own health and raising a child, she is going to upend everything for people she walked away from.

Yes, I am bitter. and I also hurt for her.

6/

“There is no biomarker (measurable substance indicative of the specific disease) for what I have. The endless dead ends, and “normal” test results, lead me to doubt myself. Labels of depression, anxiety, hypochondria are being thrown around because my physician does not believe in my disease.”

#mecfs #cfs #fibromylgia #MyalgicEncepahlomyelitis

More #mecfs thoughts about the guilt that comes from #pacing, especially when you have #SevereME
I average about eight hours of sleep a day, which is normal, right? Except I also spend most of my day either in bed, my hobbit hole (as I affectionately call my pile of blankets and pillows in front if the fireplace), or the couch doing little more than watching television (#WarriorNun is on as I type this from the couch) and checking social media
I am constantly shamed by those around me for my "abnormal" sleep schedule, my lack of energy, and my inability to do much of anything, none of which is helped by the fact that doctors see no issue with my levels of #fatigue and prefer to treat my #chronicpain (which would be great! If #fibromylgia was my only #disability !)
Rationally, I know that I can't control what I'm capable of doing anymore, and I'm trying to pace as much as I can, but it doesn't stop the guilt of thinking that I could do more with all the time I have-- even if it feels like no time at all. This is what the cultural narrative around laziness has done to #disabled people, especially people with an #invisibledisability. Until we stop associating value with contribution to society, we won't stop shaming disabled people for taking the time and energy they need to not even heal, but survive.

In all honesty,
I just hosted, cooked for & served 12 people today. I am shattered beyond belief, yet here I am still engaging in life online…
All I want for the holidays is good health & a decent BBQ❤️ #Peace #HappyHolidays #ME #fibromylgia #Crohns #autoimmunedisease

Ranteita, sormia ja lonkkia särkee. Olenkohan ainoa, joka toivoo talvella mieluummin kunnon pakkasia kuin tällaista nollan likellä lillumista? Kivut ovat paljon vähäisemmät, kun ilma kylmenee alle -10 asteen.

#kipukroonikko #fibromylgia

(Nyt tuli mieleen, että kun yksi fibron oireista on lepoa antamaton uni, niin voisiko tällainen kivuille altistava säätila vaikuttaa myös siihen, että olen kuolemanväsynyt, vaikka nukun 8-10 h yössä? 🤔)

It is snowing and cold. I am hereby resigning from society until everyone gets their act together. #fibromylgia is my enemy and I'm unimpressed mother nature is taking her side.