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Georgina Paulina's avatar

This is the most vulnerable thing you have written, and it broke my heart to read how you really feel. I am so proud of you and of the person you have become in these last years, and I am glad I could be by your side, supporting you. You will get through it; if not, at least we have each other.

Nova Scribe's avatar

The research rests in CFS/ME with Long Covid. I am sorry to hear you are struggling. 20+ years ago I was rendered bedbound for about 1.5 years. I managed to get out of the bed but life as I knew it NEVER returned. The establishment does not really understand it, it is ripe with well intentioned but unmeaningful abuse around this. Maybe not so much with Covid, but absent tangible evidence and proof we're all pretty much relegated to head case. The invalidation cost me the support of family and friends, some who in so many words might not have said it to my face but also considered me 'lazy' 'whining' and 'malingering'. Trying my best to mask, to fit in, I pushed harder than I should have. I am now at irreversible 28% ANS. Keep a sharp eye on your ANS. You have to be really strict with your pacing. Do not overdo it. You want to keep what you have. Your good days will indeed fool you. 20+ years of doing more than I ever should have has found me at risk of bedbound once more. You don't want that. Protocol at this juncture is: "Choose between bathing and eating" there is no provision for actual cooking. I don't have anyone to help me, I have no choice. 20 years in looking back, what I thought was 'improvement' was conditional and I missed the mark. STOP before you begin to feel the symptoms. Acceptance for me was hard, but I would never want anyone to realize a gain then throw it all away. This is playing for the LONG GAME. Many blessings to you. Please take good care of you, it's real, it's not all in your head.

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