The constellation of symptoms and extensive testing but no definitive leads over many years has led my doctors to ME/CFS.
I was denied palliative care, for which my PCP had referred me without my knowledge. His decision to try such measures showed me he cared, saw the difficulties, and didn’t know what to do next.
It would be very helpful to have any kind of support; my husband teaches full time and has reached compassion fatigue.
So, though this is not long covid or covid related for me personally, “long covid” seems to be the closest topic this Mayo Clinic forum site presents. I have been directed to “find support for ME/CFS.”
**Is that a legitimate treatment plan?
I have been experiencing immune problems, post exertion malaise, hypersomnia, progressive peripheral neuropathies, alongside a few dx autoimmune conditions for almost fifteen years. I also have MGUS which I believe may be related, though we lack research and information about all of these conditions.
I can relate to the reduced quality of life.
By age 42 I was already having to give up my rigorous exercise for lesser versions and much more gentle approaches to movement.
The fatigue I experience is catastrophic.
After a day, maybe two of “normal” household tasks, spending maybe 4-6 hours up and working, or being out and active, I literally crash and may sleep night and day for 18-21 hours. It can be very difficult for anyone to wake me.
Sometimes intense pain and fatigue is triggered by much less activity. The unpredictability makes consistency impossible for me.
Being 53 with school aged children at home and feeling “absent” due to my symptomatic and necessary recovery days makes me feel incredibly sad, guilty, and concerned for the future.
I also am hit very hard by viral infections. Currently, I am on Week three in bed with what started as the current cold making its rounds. Kicking these things is difficult. (My plasma cells are affected by MGUS and proper immune responses are often absent. I can have severe infections and normal white cell counts.) Strange and rare infections seem to find me as well. Last spring after blood work I was contacted by the Dept. of Health -surprise!-because I was positive for Yersinia (which is a dorm of the plague); thankfully antibiotics treated this effectively.
If I did not have faith and rest upon the Lord, I would have not perseverance. But this is where I live.
I am embarrassed to discuss this with others.
I cannot keep up with people anymore.
I am so often absent from regular events like church services that people think I have just disappeared.
BUT I am STILL HERE, trying to meep moving forward.
I appear healthy.
That seems to work against me.
When I am out, I behave normally and can usually move fairly well (or I wouldn’t be out and about), which just adds to the misunderstandings.
I try to walk along a tightrope secured by hope on one side and contentment on the other.
After years, going on decades of this, watching my own decline, in spite of healthy lifestyle choices (good diet, suitable exercise as possible, mindfulness practices, therapy, spiritual work, brain retraining, “letting go,” emotional regulation…), I cannot even pretend to have this figured out.
It is with great empathy that I read your posts, consider your plights, and offer a thought and prayers for your own situations.
I hope you can enjoy the bird song and loveliness of springtime wherever this finds you.