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Karenironside
When I read your blog I was struck by the fact that you still have this degree of investment from others - that in itself is pretty cool. My time as a 'shut-in' only dragging my ass to appointments and being reliant on others to drive, took a toll on my friendships. Not that I had that many to start with.
I had personality changes with this illness as well. I was self-absorbed and only wanted to talk about certain health related topics. I am sure that people were muttering under their breath when they say me approach. There just aren't that many who think that mitochondria are conversation worthy
I can hear the sadness...and ? self-rebuke in your blog? You seem to have become invested in this phase of your recovery - as much, if not more, than the people you worry about now (?) I am wondering how many serious set-backs you have had. I don't know what recovery means yet or who has achieved it - I am 80% some days and still whittling away at it. I still have bad days but have learned to roll with them. One thing that ME has taught me is how to cope with disappointment.
Like you, I was a high energy person. My illness has two components. There is the ME with its PEM and there are the intertwined issues with my adrenals. I am not sure where you are at with this but the associated fatigue is immediate, incapacitating, associated with a drop in BP but does not produce PEM. At least in me.
My wife is able to gauge how I am doing by my eyes. The colour, how they are focusing, whether the eyelids are drooping....I have learned to trust her predictions and it has saved me from self-harm. I can be a bit driven or so I have been told. brad