Turning down invitations

All of your post rings very true for me also. The aspect of close friends and family completely just not getting it, but not caring to take the time to learn about it now has me more than frustrated. I'm at the one year mark and that's still going on, actually has gotten worse. Many days just feeding the cats and throwing something in the microwave feels like I climbed Mount Everest and can't get back to bed soon enough! How being expected to still go out to eat, have others here to eat, even a long chat on the phone or online just isn't doable most often is beyond me now. My Stepmom and Stepsister live in the connected building next to mine. Neither has stepped foot in my apartment or even asked to. My old next door neighbor who I texted with or talked to several times a week also hasn't visited. Don't get me wrong, I'm really not able to engage in even a quick visit, but there's no trying to be "nice" coming my way from anyone now. Sorry to say I have no advice, but can only commiserate. I'm trying to settle in to acceptance of this. I can't change them. Can't force them to gain knowledge in order to understand. It's only hurting me and is sort of at my own hand now as I'm accepting their behavior. We shouldn't have to deal with this on TOP of all else. PS: How do you move on to a new paragraph here? Can't figure it out. 🙄

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/

Yes, we sure find out who our real friends are don’t we? I was very hurt in the early years of my ME/CFS by that same thing too. Many years later when Facebook came along I’d post informative articles occasionally to spread awareness and make mention of my struggles with it. It did help some people who wanted to understand. Over the years I’ve made some wonderful new friends online who shared similar stories.

My symptoms of post covid syndrome have not included exhaustion or fatigue, but those I did get have persisted since Sept 2023. Some resolved thank goodness. So, I’d keep hope alive that the symptom can fade.

Has anyone considered treating the exhaustion and fatigue as depression?

I've had this since Nov. 2020-an ER nurse in a pandemic, go figure. For me, I call them 'crash episodes' because I have crashed head on into a semi, at 100mph, hauling military missiles...then they go off and I am on fire.
I am only seen when I feel good and able to leave the house and I look perfectly fine-I am not hauling oxygen, a cane, wheelchair, missing body parts. I describe it to others as profound, incapacitating, overwhelming, leaden exhaustion-loosing days at a time. I wait as long as I can to get up to walk to the bathroom. Shower and hair puts me out. Food is microwave or Door Dash-when I feel like eating. I have groceries delivered, my bills are on autopay, my body has aged 20 years.
My life is divided into before and after. I used to be an ER nurse, at a Level I trauma center who not only prevented death, but sent electricity through the human heart and brought people back to life, ran 15 units of blood over 20 minutes into a trauma patient. I ran a half marathon for my 60th birthday. I was one of the top weight lifters at the gym, maintained a 1/2 acre garden, cooked for and hosted family events like Martha Stewart, traveled internationally. In short, I was Wonder Woman.
Now I decline concerts that I have waited a lifetime for, Cubs game over the dugout, Blackhawk games, anything social after 1:00 (if it is a 'good' day), dinner and a movie. sex knocks me out for 2 days, is it really worth it? I lost a 40year career due to stamina and cognitive loss-I am not safe. I'm stuck at home looking like Nick Nolte's mug shot. I am a mere shadow of myself. The only thing that has stayed the same is my social security number and color of my hair. I'm in counseling for grief from loss of what used to be my life, anger when I forget and do something that turns out to be overwhelming, lost a committed relationship and fear/dread of the next crash episode.
It takes what little I have to remind myself that I can take care of bathing, toileting, nutrition, dressing myself, shelter-the absolute basics of living. I could have had that truck hit me, had a serious stroke, be in hospice for caner, be in line for a lung transplant (like a woman I worked with), unable to walk, unable to live independently in my own home . I have worked with countless patients who can not. It is hard to remember gratitude-something I am working on.
What really got to me was media coverage of 5 years since the pandemic, no one talked about the lives left behind, especially the emergency providers who were out there 24/7 and what became of us-the physical and emotional toll 5 years later. Only a small handful of fellow ER workers are still there in my hospital; the experienced nurses are gone. The pandemic wiped us out, one way or another which frightens me for the future when I need help.

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 🌈

Dear Jeindc,
I offer agreement but without solutions. I am 79 years old, was diagnosed in 2020, still experience all you mentioned, but have no solution. Other than us, who could possibly understand the effort and exhaustion to shower and dress? Who could imagine how we fall asleep so quickly and unexpectedly? I have no solutions but offer total reassurance that you are not alone. It is incredibly sad that our socializing has been all but eliminated due to our symptoms. I know no one in my situation so was drawn to and grateful for this website. I am exhausted beyond description because many Long Covid symptoms mirror the symptoms I endure from a rare incurable blood cancer. I have more horrendous days than good ones and those for only a few hours. There is no solution but am hoping this message brings you total understanding, compassion, awareness and all else you need to get through today. Aging is sad when afflicted by conditions that we did nothing to cause. Am with you in spirit realizing that is less than what you need while being the best I can offer. Hugs from afar.

Thanks, Suz. Yes, I too post articles about LC and some still, even reading them, can't imagine that a 'simple' virus could do so much. And I look fine on Zoom -- if I put on make up and clothes that look better than what I usually wear around home. About new friends who understand .. that's wonderful!

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

I'm Joan - so we'll do that part!

This that you wrote "...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." mattered so much. It's been harder for the last months because my best friend - local to me - and a huge help moved bec of her husband's illness, and two other friends, my age, died - one I think of long COVID symptoms tho' it was listed as pneumonia but he'd had al the other stuff for some time after getting COVID 3x even vaxed after the first two when we were able to get them. Learning to live w/o those who know you best and longest is what's difficult. I think I'm rounding a corner....

Your words and other here make such a difference in feeling less alone about symptoms and the whole thing. And I'm in the US (unsure where others are) and the restrictions on COVID vaccines now worry me. I got COVID once in '23 when my husband brought it home from an office team building. Mask otherwise always on, just off to eat ONCE and boom! Most of the people thus will not be boosted. I hope "here we go again" is not our "song" this Fall.

Joan