Thanks
@jonathan_h
I agree with
@Jaybee00 comment above that definitely applies to me as more on the introvert side. Spending over 90% of my time without in person contact doesn’t really trouble me. Online contact is a good mitigation for me on a daily basis then in person once or twice a week on average.
Other factors include the age of onset/diagnosis. I had diagnosis in mid 50s so already had a range of swings and roundabouts in my life experience that I’d learned from so haven’t got stuff like introspection, mental resilience, as a new thing since being ill my personal politics hasn’t changed as a result of having ME. So I was already able to put my illness experience in a context eg of my parents both having different illnesses and difficulties.
I actually wouldn’t put anything in the genuinely appreciative level.
Having time off work or school is definitely an Eff off. That time is not available for doing “good” stuff to anything approaching the extent a healthy person would assume. I am spending a lot of time on the couch watching tv sure but I used to be an avid reader of novels, I attended one concert last year, left the country on holiday for the first time in 8 years. My peers are retired and going to concerts involved in running charities going on long haul holidays. I’m excited if I make it to watch my football team once or twice a month.
Despite the invidious comparisons I have definitely learned to face the facts and try to prioritise my activity towards stuff that gives genuine enjoyment and connection to get the most I can manage out of the situation, including small pleasures.
The online ME community is such a mixed bag that I can’t say it’s approaching wholly positive. Obviously luckily the Forum is a place I feel pretty comfortable and appreciative of just wish I had capacity to understand more.
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