Any tips on coping w/isolation, loss of support. LC since 2020

Zoom group sounds interesting!
Keep us posted-- And thanks!

@Everyone, and @annewoodmayo and @rms your stories resonate with me I’ve been feeling so isolated and alone lately. I also have a nursing license and am an educator. I had support for the first 18 months but it’s like everyone is over it and moved on. They all expect me to have an “answer” like cancer, MS, etc. to explain symptoms or they don’t believe me. My work was supportive (work in academic leadership at a college) but when I turned in FMLA paperwork, now it’s like I’m an alien there and I feel as though everyone resents me. I cannot function at work - physically, cognitively, etc. I am home most of the time and just try to make it through without being let go. I’m scared. Not to be intrusive, but what is everyone doing for income? I have been looking for online/remote work but there are hundreds of applicants and I don’t believe I could even make it through an interview. I have a doctoral degree but I feel like I now have gone back to first grade. The way you describe what you can do at home is the same as me. I get about 45 min of something I can do and I’m shot. My husband does all the cooking as I cannot follow recipes or stand in the kitchen very long. I am in bed most of the time and my kids lives are just passing in front of me. I too feel they would be better off without me sometimes.

bsd86
Income...
I was on FMLA, 12 weeks at a time, that was extended repeatedly for ~10 months. I had no income, but I could keep my insurance as long as I paid in the deductions at the rate I paid while working-an amazing price! At 10 months I was let go and started COBRA insurance for 18 months at 4 times the cost. I wasn't quite 63 1/2 years old to get medicare then so I am fully out of pocket for insurance at ~$1200 a month. I have sent my divorce attorney numerous thank you's for the settlement-that and good retirement planning is keeping me afloat now-but it won't last long enough. I need to apply for Medicare; I dread the process for the amount of information I need to understand to make an important decision. Finding private insurance earlier this year was overwhelming.
What I do know is I'm not paying for theater & concert tickets, travel, dining, adventures, sports--I gave up trying because I had to cancel all the time due to my stamina, so I don't have discretionary spending any more-it's just not worth trying. Although on a whim I did get tickets to a minor league hockey game in the afternoon to "try it out" and see if I can handle the much lower price, shorter drive, noise, excitement and an unfamiliar place without that horrific 'crash' the next day. So, starting small with baby steps. Getting back to a Blackhawk's game would be MY personal Stanley Cup win!!!

Hello, I am so very sorry that you are going through this. It’s discouraging that the medical profession does not yet have effective treatments for this complex and currently poorly understood illness. I struggled with similar problems both physical and emotional. It sounds like you have a supportive caring husband and children who love you. Give yourself grace. Pacing yourself is important. Don’t force yourself to do more than your body can do at this time. Take naps when you can. Your body needs to recuperate. I consultated with an immunologist in NYC and she prescribed a very low dose of prednisone 5 mg daily for my muscle and joint aches. It resolved the pain and gave me a lot of energy to do things . I also take low dose naltrexone 4.5 mg for brain fog issues. That has also helped. Antidepressants have done nothing, but. Mood stabilizer lamotrigine 100 mg has been really effective in stabilizing the sadness and depression. These few medications have allowed me to find the energy and interest to do the things I like such as gardening, bird watching, reading, walks in nature, meeting a friend for coffee and even taking a class in swing dancing - the music is so joyful it lifts my spirits even if I can only through one song. When you have a little bit of energy, try to do something you enjoy but never force yourself. Be kind to you. Your last sentence worries me ..it sounds like you are depressed and perhaps seeing a therapist or counselor to talk about your feelings might be helpful. Please have faith and hope that as we learn more about this illness you will improve. Also consider applying for federal disability Long Covid is now categorized as a disability. Monthly payments are over 3,100 dollars. Speak to a physician with experience in disability benefits. It’s clear that your illness is preventing you from working as you once did. Apply for every government assistance that you may be eligible for. NYS is very generous even with SNAP which provides 800 dollars a month for a family of three with low income. Don’t hesitate to speak with a local social services case worker. Find a thoughtful physician who is open to allowing you to participate in your own care and be your own advocate. Based on personal,expericme - prednisone 5 mg one daily, low dose naltrexone 4.5 mg daily and lamotrigine 100 mg once daily have been life changing, I wish you all the best

I appreciate the suggestions about the medications. I’ve tried so many things w/no improvement, which is discouraging.

If you’re able to garden & go swing dancing, it sounds like you’re doing pretty well!

I improved quite a bit for about 8 months. I was able to go on walks, run errands, etc. I’d give anything to have that level of mobility back.

I then began having cardiac issues again. Since reinfection, I’m nearly bedbound. I can’t walk to my own mailbox, let alone go out to see friends or to the store.

Friends, even family, who were supportive for the first 6-12 months stopped returning my msgs quite a while ago. I heard from someone else that it “makes them too sad to see me so sick”. And others, don’t want a friend who can’t go anywhere. I basically have to live like it’s still Spring 2020.

I only leave my house for doctor appointments & that leads to days-long crashes.

Of course I’m down bc who wouldn’t be? I think a lot of people in this forum are a bit older as they discuss taking early retirement due to cognitive issues. I’m in my early 40s. I was a competitive swimmer & runner prior to this illness. I’ve gained over 50lbs due to my inability to exercise at all (SVT). I have a therapist & psychiatrist & am fine but this situation is just incredibly hard. I’ve had my whole life ripped out from under me in my prime.

I also lost my father to Covid. So this has been 3 nightmarish years.

I work with my therapist on coping strategies but we can’t change the logistics of my situation. There’s not much wiggle room.

I’ve also been to countless specialists & honestly none have been any help at all. They recognize all of the severe cardiac issues but kind of shrug as to how to move forward. Ive tried 3 cardiologists! They’re all baffled how I could be so young & previously very fit & now can’t walk 10’ w/out my HR jumping to 160. It seems too complicated & they don’t really want to try.

And the appts are so physically taxing for me, it’s hard to keep searching for new providers who may actually care and/or help. At what point am I actually impeding my healing by continuing these countless appts. that are no help at all?

So it feels like I’m in a holding pattern until there’s a breakthrough in research. This is the hardest thing I’ve ever done. So few understand how difficult it is. Thanks again for your suggestions.

Are you taking prednisone every day?

I can relate. Long Covid left me confused, tired, a jerk to be around, and altered who I was.
The long Covid program at Northwestern referred me to a neuro-psychologist. She works with long Covid people and others with brain diseases and injury. She understands the frustration, desperation, shame, anger, loneliness,
Just another tool to consider.

Hi bsd86, [and others, too 🙂 ]

sorry for delayed reply. I've just had a string of very bad days...

income- first short term disability, covered by work
then- long term disability, also covered by work
then, lastly and currently- social security disability

Our long-term plan is to move to somewhere with lower property taxes. We won't be able to stay in our current home. It's hard to find someplace near family with lower taxes.

Time--- I am hopeful and really do think that for a lot of people the passage of time may help symptoms improve, especially if you can rest and not stress [Hah! pretty difficult!] and add a tiny bit of activity.

Toxic positivity-- I'm sorry if my bit about Time seems too optimistic.
Sometimes, I get really fed up with the folks who simplify or deny the illness. "Just stay positive" (which is generally good advice) or "keep fighting"-- makes me crazy sometimes, though I know they are trying to be helpful...I have said stuff like that myself, too.

REST cures
Way back in the day-- late 1800s, early 1900s-- people would take "rest cures" for certain illnesses if they could afford it. They would go to a healthy place, like the mountains or seaside, and rest. Get fresh air, good food, maybe a little exercise. Not have to think or worry about anything. Sorta sounds like a low-key all-inclusive spa vacation. I think we need these again.

Sorry to ramble. I think another bad day is upon me.

Hope you have the best day you can!

Positivity is difficult when negatives abound. I've felt isolated from others for most of my life, starting with getting bullied in 6th grade. I had a moderate TBI 30 years ago, and was able to write my PhD dissertation even tho I couldn't always remember my name. Hardest part of that was the isolation; I wasn't who I was and mostly coworkers excluded me and called me names like "massive headwound ..." and "brame damaged". After a year, I realized I was calling myself those names as well. Then celiac hit 14 years ago, more social isolation and lost friends because I couldn't eat gluten (fad diet...). I had to find new friends, clugs, and volunteered for my social connects. I can't volunteer much now with LC, but even bits help with isolation. So, with this plethora of negatives and now long covid, how to deal with it? It sometimes felt like my injuries/illnesses were me, rather than things I had. I didn't go on antidepressives, but that is an option. Cubbyholes to escape into are good, reading short stories and the paper (avoid the evening news), small bits of exercise with rest between, non-aerobic resistance and stretching is easier with LC, writing down good memories, when you do talk to others try to focus on them, and get outside of yourself however you can. Does your community have home visit volunteers because having people to talk with and listen to you helps them and you. After my TBI a friend asked what I would like for Christmas and I said teddy bears (I still hug them sometimes; second childhoods count too). Being stuck and isolated is mentally and emotionally draining, a deep hole that must be scaled. Twenty years ago a casual associate had a massive head injury from skiing; she had a lot of friends and most disappeared, which is common. I and another associate helped her family with the isolation, keeping her active and engaged until her friends came back. It helped her and us. I hope the bad days get shorter and the days get brighter, but it is a hard climb.

I struggle with the isolation also, but in my case it is a bit self-inflicted. I have fear of reinfection, so avoid indoors - no bars or restaurants. I will go indoors to a store or pharmacy on occasion but wear an N95s. I mask at my doctors office though no one else does, not even my doctor or medical staff. So yeah, it’s like living in a different world. And yes, have lost friends who think covid is no worse than a cold. It’s a tough spot to be in - everyone else has moved on, but I’d still rather be safe than sorry.