An invisible illness... but only if you don't look closely.
ME/CFS is known as an invisible illness, because often we don’t look sick and standard medical tests often come back normal. But you don’t have to look far to find abnormalities.
Orthostatic intolerance (being unable to tolerate being upright) is a common feature of ME/CFS. It shows up as either elevated heart rate (me) or drop in blood pressure when upright. It’s one of the aspects of autonomic dysfunction associated with the illness.
I’ve started wearing my HR monitor again, after a long hiatus, and the trace (showing beats per minute) from yesterday tells a story: lying in bed resting before visitors arrived for Dad’s 70th, going out to greet visitors (initially standing up, but then needing to sit down after a few minutes (you can see when I sat down)), then sitting chatting to relatives as my HR slowly creeps up, until I can’t sit up anymore and need to go back to bed.
I went back to bed, and rested for about 45 mins before going out again for the singing of happy birthday and cake cutting (but I forgot to turn the app on, so didn’t record the HR data for my second trip), but my body hadn’t recovered from the previous trip, and I didn’t last as long. The second time, I crashed halfway through eating my cake (couldn’t speak much, was zombie-faced, had difficulty walking and needed help getting back to bed). Most people don’t usually get to see that side of the illness.
Research has shown that people with this illness don’t make energy properly, and we need to keep our HR under a safe limit (which, for me, should be around 105bpm) to avoid going into energy deficit and triggering payback symptoms. Clearly, I didn’t do that yesterday!
So, today, most of the day I’ve been in pain, have had difficulty moving, brain has been mush, my temperature regulation has been off (I’ve been feeling too hot, despite it being winter and the heater not on very high). I’ve spent the day lying flat and am only just starting to be able to sit up and type now.
This is why patients object to the name “Chronic Fatigue Syndrome”. This stupid illness is many things, but it’s not being chronically tired.
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