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Hello @jeindc,
I’m so sorry you’re suffering with this. I totally relate as I’ve had ME/CFS for 40 years. Saying no to pretty much everything and trying to explain my illness, even to doctors, when I “look great”, has been almost as frustrating as dealing with the many debilitating symptoms of it.
Long Covid and ME/CFS share many similarities. I’ve tried over the years to explain it but most people will never get it unless they have it or live with someone who does. They may be kind hearted (and some maybe not so much) but how can they possibly understand such a life altering affliction without experiencing it? It’s just so frustrating. We raised three children while I was sick and I honestly think they still don’t even fully get it. Thankfully my husband does and is now my caregiver and advocate.
I would suggest you check out Solve ME’s website for encouragement and information. This fantastic organization has been around since the 80’s and they now include Long Covid. I have sent their informative articles to people and posted them on social media to try to educate people.
Sending good thoughts and best wishes!
https://solvecfs.org/me-cfs-long-covid/patient-and-caregiver-resources/
Replies to "Hello @jeindc, I’m so sorry you’re suffering with this. I totally relate as I’ve had ME/CFS..."
Just realized I could've answered both in one and didn't. I so appreciate this additional information and especially the link. HOW you raised children and managed .. I do not know. We have one cat and after the deaths of 2 my husband wanted at least one more. I can barely manage one ... and her needs are NOT that of children!
A friend with ME/CFS has been helpful - she helped me feel comfortable about hearing aids, and doing nothing. It's the latter that's hardest! I'd worked for pay from baby sitting to a weekend job at 14 with only time off for surgeries and NOT working is the toughest. Yet, I have no choice. I can't.
I will read more at the site and continue to bug docs about looking for help - it has to be there eventually.
With gratitude and care,
Joan
My goodness, that's crazy you've had that for 40 years!
I got that too, as I've mentioned before, in the late 80s, but it went away after about two years.
Now that I've succumbed to LC (for just over a year now), it feels very much the same as CFS/ME did. Pretty much just constant fatigue for me, which is a lot luckier than for many people with either disease.
I tend to the view that they are both the same phenomenon--some kind of post-acute-viral malady (usually), and I'm frankly horrified that after all these decades, there still seems to be no definitive answer to CFS/ME (and now) LC!
I do suspect that it does attack people's susceptibilities / weaknesses, hence the variability.
There had been over a billion (!) dollars set aside to research this, but with the CDC being clawed back and compromised, I'm not feeling particularly sanguine about much progress.
You must be one tough lady, and I respect and admire you for that!
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Hi @db72. I have to laughingly admit I still dont know if I use the @ or real name correctly here after my 4 yrs of post covid and almost 40 yrs of now fully reactivated ebv🙃 This post meant to be as my moms name was Suz and she was the strongest woman I know going thru 3 different types of cancer. Oh how true the mindset “others just dont know” is so vital to literally maneuver each hour. Last week my lifelong dear friend said “she didnt realize” in her loving way and the polar opposite of a person I thought was my friend and helping me referred to this life I didnt want as exhausting and my crap!!!! For @jeindc and all others I hope you’re able to find healing peace knowing only those who really care, respect you, and may not be able to visit much, are the only ones who should be in your space as life is precious and our journeys need those supportive people who may not be able to fully understand yet add loving compassion we need. Quickest healing to everyone 🌈