Connect
Turning down invitations
Long COVID has upended our lives, that I know. For those who've had it since 2020, I do not know how you have survived if your symptoms are as bad as mine. And I'm just 2 years, 5 months in.
Here's where I need help/advice -- well, one thing: Bec of this, I retired from self-employment in Dec. 2024, tho' didn't announce publicly until May this year. (It just felt too awful after 44 years of my own biz.) All the usual "congratulations" posts on social media which, when a bit more like my contributions were like a pre-Celebration of Life! Nice to be alive to read it!
It's NOW - friends come into town and want to see me - for a meal or to come over; those in town think that now that I have all the time in the world I should be eager to see them or have them "make something to eat" and come over. I can't - literally CANNOT. To shower and put on clothes I'd want to be seen in takes up to 3 hours and wears me out. I am rarely not in pain. The exhaustion hits when it chooses - yesterday, I literally couldn't wake up - or I'd wake, and within 5 minutes, fall back to sleep.
How do you explain it to people, this awful illness about which only those of us with it know? I've put people off even for Zoom unsure I want to be seen or have the energy to talk. I'm still doing a bit pro bono consulting bec my brain needs stimulation. How many times can you say "no, thanks, tho' I so appreciate your offer" without losing friends? A dear friend called the description of our ills "organ recitals" which I know too few want to hear. How else?
It feels so rude when people want to be nice!
Thanks.
JE
Like
Helpful
HugInterested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.
Connect
THANK YOU to each and every one of this group who wrote to me and commented on others' posts about living with LC and trying to maintain friendships and some semblance of life. THANK YOU to the Mayo Clinic for this platform where we, for once, do not feel that it's "just us" or "nuts" or sad or depressed or that there is no hope. Your comments all were amazing. I apologize for not responding to each. The "long weekend" turned into one when I was unable to do much at all - even with good intentions of coming to the computer (much easier than my iphone) to respond to each note. Pain and fatigue overwhelmed me.
To those who mentioned different treatments (I am on synthroid - or the generic form -, having had hypothyroidism since my teens) and to @vostie, Low Dose Naltrexone, I can't take it because of other meds I'm on. I am thrilled it works for you.
Today, Tues., 2 September, tho' I feel no better, my emotions are in a more "suitable" place to engage with colleagues and friends, you all among them, and family. I have lived my life for 78 years with purpose - and from my parents (z"l) told me, literally from day 1 it seemed so. Having LC and being forced to retire from the business I started in which I was able to earn enough of a living "doing good" for causes and people that matter to me, experiencing the death this Summer within weeks of each other, 2 friends of many years, both my age, I was in a downward tailspin. LC has made me realize more than ever the mind-body connections. There will be good and bad days for us all, and for those of you with other illnesses and with LC for 5+ years, brava and bravo for being able to give back.
You have all helped me grab on again and my gratitude is immense.
Let's take care of each other, and if we are able, get an updated vaccination, and carry on the mission of helping others understand.
Joan
-
Like -
Helpful -
Hug
2 ReactionsYes, the use of antidepressants to treat LC is something that's being pursued, essentially as an "off-lable" use, particularly with SSRIs.
Quick net search turned this up, for example:
https://www.psychiatrist.com/pcc/growing-evidence-potential-use-antidepressants-long-covid/
Yes, I quite agree with the idea of treating symptoms as you say, since a treatment for the cause, per se, doesn't really yet exist!
There's an element here of throwing things at the wall to see what sticks, but given the variability between people perhaps that's the best approach.
At the same time, although LC is definitely not the RESULT of depression, depression certainly can occur as a reaction TO suffering from LC!
Each of us needs to find what can best help maintain our mental/emotional equilibrium, be it via limited social activities, gentle walks near nature, mindfulness/meditation practices, communing with your god(s), etc. etc.
And, yes, appropriate psychiatric medication may well be helpful for many of us, too!
NO STIGMA!
-
Like -
Helpful -
Hug
3 Reactions