← Return to Long haul Covid tremors and muscle spasms

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@kymmiejane72

Hi there, how are you now? I just wanted to encourage you by saying ‘you’re not alone’. What you have experienced sounds very similar to myself, right down to the ‘ataxic gait’.
Hang in there 😊

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Replies to "Hi there, how are you now? I just wanted to encourage you by saying ‘you’re not..."

Please, I beg everyone's forgiveness for my frustration in this post, but I am willing to say that I am NOT alone and some of you share my frustrations.

I really appreciate you writing as your post has spurred me to share some of my experiences in hopes of helping others and in the spirit of sharing ideas and possible solutions.

I am experiencing a very similar situation; I am also in my 50s and was healthy with a kicking immune system until the biological weapon (COVID) hit me in January.

Incidentally, I got this from a lousy long term care facility that had an outbreak in which they neglected to say anything about. I visited briefly to bring my spouse supplies while they were regaining strength from a hospital stay. Had we known, the spouse would have come directly home and not gone to the facility where they didn't give any of the rehabilitation strengthening exercises they billed Medicare for because of their "lockdown".

Yes, I used a mask. Yes, I hand sanitized after stepping out of the room and once again after getting into my truck - I wiped down my hands, my keys, my phone, AND the steering wheel. So much for preventative techniques and oh, how wonderfully well those masks we were forced to wear work. Hah! More lies and deception.

I used to walk or hike 2 miles per day on 4-6 days weekly. Now I struggle to walk 1/4 mile once a week, if that. There are weeks I can't even do that, like this week. I am now walking with a cane. I can walk into the next room and back and my heart rate jumps up to 150 and I am panting like I ran. I have nearly all the "typical" symptoms listed for long COVID except loss of taste/smell. I also experience feeling ethereal.

I am now in jeopardy of losing my job and income as of July because I haven't been able to work since January when it hit. My short term disability ends in July. Then what? Once that happens, who in the glorious medical community will see me??? (Do you really think they will volunteer any of their time??). And I am repeatedly told to rest, get sleep, eat well and reduce stress??? How?? Will anyone provide me with surety of a job/income?? How about nutritious food?? Water???

As sole caregiver to an elderly disabled spouse (wheelchair bound) whom I can no longer help, rendering me rather useless as a sole caregiver!

What and who is available to help??? Crickets. No - this is NOT at all stressful. Where is the care and compassion of our medical community??? Perhaps it left when they got their paychecks.

But! I am "better"...since January. My lungs look "relatively clear" on X-ray after also being diagnosed with pneumonia in January.

Extremely frustrated with our medical system prior to this as it has deteriorated immensely; this only magnifies it. Having to wait and play the phone tag games with doctor's offices is another frustration. It often takes 2-3 months to get into a specialist office. In the meantime the damage to the body continues. No doubt the patient is to blame because they didn't seek care immediately. 🙄. Whatever. Except, I did and the national healthcare system that everyone rushed to vote in puts more barriers to care than actually helping.

There is no help, no answers, only - "You STILL don't feel well????". "You STILL are sick???". "Will you ever go back to work??".

Additionally, the medical community in their infinite wisdom demands appointment after appointment which are all at least an hour drive away making the outing about a 4-5 hour day by the time you grab something to eat and return. What part of exhaustion and fatigue and weakness don't they understand?? Do they not teach this in medical school these days???

I am tired of all the BS and want answers and help.

Again, my apologies for my frustrations. I only hope others will share theirs and their stories and solutions as well.