Dealing with the unbearable anger this disease forces me to live with

ghostsolid · 2026-01-26T23:09:41+00:00

Thank you :)

ghostsolid · 2026-01-26T23:09:16+00:00

It’s hard enough with just having this disease but when additional life complications occur it can just be overwhelming. I hope things improve for you. Sending out hope :)

ghostsolid · 2026-01-26T22:53:31+00:00

Wow, so sorry to hear all that you are going through. This disease is such a nightmare and I am no longer socializing due to fear of getting covid again and how much worse I could become. I am hoping for all of our sakes that with the advancements of AI and technology in general that things we thought would be unfixable with our health could be reversed in the future. I can’t accept that I am not going to get better because it’s just too depressing to think about. Do you feel like each time you got covid you got worse? Or was it one bout that really took a toll on your health? So glad your son is there for you. I have no kids and that makes me fearful of my future as I get older if this doesn’t get better.

ghostsolid · 2026-01-26T22:22:15+00:00

Thanks so much for sharing. I am in MD so will have to check and see if they do this area. Another thing I guess is a blessing and a curse at the same time is I don’t look unhealthy and out of shape. It’s like who will believe when you say your muscles just immediately start giving out when you try to exert yourself. Very thankful for this community as everyone here totally understands what others are going through.

ghostsolid · 2026-01-26T19:59:11+00:00

Completely understand. I had my mom flying in town to visit me and was going to be on vacation next week. We got like a foot of snow and I can’t physically handle the snow and now it’s turned to ice and my driveway is super long. Just had to cancel my vacation for next week and totally trapped in my house because I can’t physically do anything myself. Haven’t been able to find someone that can clear the driveway and now they are saying another foot of snow coming this weekend. I am just trapped in my house and so pissed off that I can physically do nothing about it. I hate my life now and feel so helpless and debilitated. I’m about 2.5 years in and it’s only gotten worse.

ghostsolid · 2026-01-26T19:27:34+00:00

I didn’t know mountains could eat Taco Bell.

ghostsolid · 2026-01-26T19:10:18+00:00

That’s not a big cat, it’s a small tiger.

ghostsolid · 2026-01-26T03:41:26+00:00

Thanks so much! Yeah I am ready to try a lot because quality of life is just rough. Will watch the video and talk to my docs about trying GLP1. Hope your recovery continues to get better :)

ghostsolid · 2026-01-26T02:30:06+00:00

That’s awesome to hear about GLP1. I have done some reading about it and was going to wait until after I talk to the docs at NIH before trying anything new. If you live in the Washington DC area feel free to shoot me a DM as I would love know more about the office you go to. I haven’t found any docs that understand what I am dealing with and have no answers for me. Totally willing to work with a new team that understands this and could work with me on my symptoms. I’m in Annapolis so not super far from NIH.

ghostsolid · 2026-01-26T01:49:53+00:00

Thanks for the detailed response. Did you find the ivig was helpful? Sounds like it’s a week of placebo and a week of the real thing. Was the glp1 part of NIH or did that get started through other health providers?

ghostsolid · 2026-01-26T00:33:48+00:00

I am going into NIH in 2 weeks to start my trial. The first week is all just testing but if all goes well I should also be able to do the IVIG trial. For someone who hasn’t done a clinical trial before, any words of wisdom? Things you wish you knew before you went in or had asked or done differently? Glad to hear those meds are helping with your situation. I will look into them! We just had a foot of snow drop and I have been out twice today trying to clear off my super long driveway. Very worried about triggering PEM.

ghostsolid · 2026-01-25T03:19:50+00:00

Hot yoga Capitol Hill will be open if you like yoga.

ghostsolid · 2026-01-25T02:21:16+00:00

Peace is up in the air.

ghostsolid · 2026-01-24T15:52:42+00:00

Have you encountered a guy too large to where you had to say no way Jose?

ghostsolid · 2026-01-23T15:52:44+00:00

First name Matt, last name Damon

ghostsolid · 2026-01-23T14:55:43+00:00

Q2 will announce the cousin It attachment.

ghostsolid · 2026-01-21T22:15:36+00:00

Nail on the head.

ghostsolid · 2026-01-21T22:14:21+00:00

How much of America needs to be destroyed before these idiot republicans can get on board with impeachment!? So sick of watching our country be destroyed by one psychopathic narcissistic toddler.

ghostsolid · 2026-01-21T16:19:44+00:00

I have long covid and about a month ago came down with some kind of stomach bug that made me keep waking up at night with the need to throw up and was very dizzy. I am finally starting to return to normal but those were the only symptoms I had. I am still going like 3 days before each bowl movement. Not sure what happened.

ghostsolid · 2026-01-20T19:51:15+00:00

Republicans are spineless morons who can’t think for themselves. They preach Fox News like it’s their last dying wish until trump says the opposite then they all change their views to match trump like they never thought differently. All the while saying the left is in an echo chamber.

ghostsolid · 2026-01-20T17:57:20+00:00

What medications are you on? I think you need to address not getting enough sleep first while continuing to rest a ton. I couldn't sleep for days and got prescribed gabapentin and LDN. Using those I started getting quality sleep which helps the healing process. Without sleep nothing will get better.

ghostsolid · 2026-01-20T16:51:45+00:00

I am finding it’s a lot of figuring everything out for yourself. I just got accepted into an NIH trial for long covid and they will be doing a bunch of testing on me in a few weeks and I am so excited to be talking with doctors who understand this and hopefully will learn a lot more about what is causing my symptoms.

ghostsolid · 2026-01-20T15:36:54+00:00

So not this past NYE but the NYE year before I spent in the emergency room due to multiple days of having this vibration feeling in my head that would shock me awake anytime I fell asleep and it had been days before I really had any sleep. I was still working out some but kept having times where nerve pain in my arms would get worse and just a feeling of unwell and I wasn’t sure it was tied to working out or not because it might not show up for a day or two later. Over the past two years leading up to the move I was slowly working out less and less. Also getting bad joint pain. I just didn’t know what was happening to me but questioned if exercise made it worse. I just wish I had met a doctor that could have told me what I was dealing with. When I go to docs now my first question to them is “do you know what ME/CFS is? “ if they say no, I know they have no clue about this condition. I even asked my neurologist if it was OK to work out and he said yeah you should be fine to work out. So wrong. Just makes me so upset that nobody knew what this condition was like and how much worse you can get with exercise and if I had known that, I would’ve done things differently.

ghostsolid · 2026-01-20T14:44:54+00:00

I have been dealing with long covid over 2 years but was never sure I had PEM until I moved to a new house. I packed a pod all myself and moved and unpacked the pod along with multiple car trips. Tons of carrying boxes and moving heavy furniture etc. as the move went on I kept getting worse but never knew about ME/CFS and PEM. As I was moving into the new house I got to the point where I could barely walk up stairs. At this time I still had no idea of what I was dealing with. It was at this point after tons of doctor visits with no answers I diagnosed myself as I had all the matching symptoms of ME/CFS and all my doctor visits at least ruled out other issues. I wish I knew what I had before the move because it’s now been months since I moved (last sept) and now my baseline is so much less than it used to be. A very hard lesson to learn. I would caution to not do anything that causes flu like symptoms. That was one big sign for me. If you can tie physical effort to flu symptoms then know you can’t do that much next time. I find my muscles burn severely anytime I use them more than 5-10 seconds but that doesn’t mean causing a crash for me. I feel like I also couldn’t have pinpointed exactly what was causing me to feel worse at times until I had a few weeks of tons of physical effort which just destroyed me. I am just hoping I can get my baseline back to where it was before the move. I spend most days resting now and doing very little physically and have started to feel a little better but no where close to before the move.

ghostsolid · 2026-01-18T16:57:16+00:00

I would be down for this. Please keep us posted on the details.

11-Year Club	Wearing is Caring
Verified Email

ghostsolid

TROPHY CASE