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

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!