Ravn
Senior Member
- Messages
- 147
Problem 1: ME + POTS mean I can only sit in the passenger seat of a car for about 20 min before symptoms become bad.
Problem 2: The nearest medical centre is a 1-hour drive away. Cue major PEM. Worse, recovery from PEM is only partial: each time I loose about 2% functionality. If I continue at this rate they'll have to extend the functionality scale into negative % .
Problem 3: I also have haemochromatosis. Treated haemo is no big deal. Untreated haemo, on the other hand, leads to organ damage and is ultimately fatal. Treatment is essentially the same procedure as donating blood, except at the end of it they destroy my blood because obviously they can't give nasty ME blood to other patients. Anyway, they only do the treatment in the clinic, no home visits, and I need at least 6 per year.
Talk about being caught between a rock and a hard place!
Have tried breaking up the travel, 2 days to get there and 2 days to get back! Still crashed badly.
My doctor tried to track down some sort of ambulance transport, hoping that travelling lying down might be easier, but has found nothing.
Any bright ideas?
Footnote: Untreated haemo becomes a fatiguing condition and can get in the road of an ME diagnosis. Hasn't happened to me but have heard of somebody with haemo who was told if you have haemo you cannot have ME.
Problem 2: The nearest medical centre is a 1-hour drive away. Cue major PEM. Worse, recovery from PEM is only partial: each time I loose about 2% functionality. If I continue at this rate they'll have to extend the functionality scale into negative % .
Problem 3: I also have haemochromatosis. Treated haemo is no big deal. Untreated haemo, on the other hand, leads to organ damage and is ultimately fatal. Treatment is essentially the same procedure as donating blood, except at the end of it they destroy my blood because obviously they can't give nasty ME blood to other patients. Anyway, they only do the treatment in the clinic, no home visits, and I need at least 6 per year.
Talk about being caught between a rock and a hard place!
Have tried breaking up the travel, 2 days to get there and 2 days to get back! Still crashed badly.
My doctor tried to track down some sort of ambulance transport, hoping that travelling lying down might be easier, but has found nothing.
Any bright ideas?
Footnote: Untreated haemo becomes a fatiguing condition and can get in the road of an ME diagnosis. Hasn't happened to me but have heard of somebody with haemo who was told if you have haemo you cannot have ME.
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