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Replies to "I feel the same way I want my life back. I have trouble just maintaining my..."
I contracted Covid January 2021. I want my life back too!
Yes, Yes, Yes. I can't keep my house up. I have to unload the dishwasher in stages most of the time. I have to cancel plans a solid 90% of the time. It more than sucks. I don't make plans often for the same reasons that you mention. It not about taking a nap either. It's hard to explain, that is not like you didn't get enough sleep tired. It's my entire body, brain, muscles, joints, eyelids, hair, body is tired, it all hurst and it all need to lay down. There is a long list of other things to accompany that but I can validate you right now - I know how you feel your body feels, how it makes you emotionally feel, how you feel others think they know how you feel or think you are exaggerating or its psychosomatic or the medication.
I don't know what steps you have or have not taken but I will share with you what I have done to this point. This is just what I tried and it may give you an idea of something you have or have not yet spoken to your healthcare professionals about:
I have been on a boat load of medication in many combination's for my Long Covid symptoms: there are a lot - for example: I am on Adderall XR because I cannot concentrate or focus - my husband says it helps (a higher dose would probably be his preference & mine) but it does help
Acupuncture for migraines & joint pain
Collagen Peptides - these were already in my daily diet, but recommended
IV therapy with NAD
FODMAP diet -
Gluten free diet
Miralax - I switched to Prunes - then to Amazing Grass Alkalize & Detox -it works very well
Physical Therapy
Speech Therapy
1 NIH Clinical Trial Study - Medication Paxlovid / I was in the cognitive group. I will know if I received the medication or a placebo by the end of January -ish. It was a 120 day study period.
1 UCSD Blood Brain Barrier Study - to compare Long Covid patients brains with those with Alzheimer's
I have found a few peer to peer groups and my experiences have been very positive. The once I have found are with a heath group and are zoom calls with a medical pro and Long Covid sufferers or long covid and oncology patients or survivors. I have learned a lot from them. You are not alone. Be kind to yourself.
Ditto to everything you said. I can’t wash my hair in a shower any more because it’s too exhausting. I have to do it in bathtub with long soaks in between, then only about 15 second of rinsing in shower.