Turning down invitations

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.

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.

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

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 🌈

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

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/

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

@law59 I think I commented on this under another comment. Duh. Old people and technology 🤣
Eesh, sorry about your “friend”. With friends like that who needs enemies? I’ve had them too, unfortunately.

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?