A huge part of my life now is that I always feel tired,
which makes me feel pathetic. Even when I have had a day of doing next to
nothing, like today (although I am going to see Through The Keyhole being
recorded later), I still can feel exhausted. I went to see an OT last week to
discuss my issues that have been getting worse over the last year or so. I
mentioned how I can be knackered from just sitting at the computer writing but
she said that although it doesn’t seem like I’m doing much, typing takes a lot
of brain, hand, arm and eye energy.
Another interesting point she made was that the body takes
longer to recover from everyday activities with Friedreich’s Ataxia so my
fatigue levels are dependant on what I have done the previous day. Obvious but
I hadn’t thought about it before. For example, a session at the gym can
completely wipe me out the day after but you’d expect. However, I get tired
doing the most mundane things. My car was being serviced yesterday (can you
believe it has been a year) so I had to wait in Harpenden for about an hour. My
carer and I sat outside a coffee shop enjoying the sun. Hardly tiring but I
feel shattered today.
Now, I’ve been told to try and make weekly plans so that I
don’t end up going shopping, have a hospital appointment and then go to the gym
all in one day. Also, I like to sit at the computer for hours on end but as she
said, it’s exhausting so I am trying to break it up into 15-minute bursts
throughout the day (although I have written this post today in one go as I’m
off out soon). This may sound like a weak excuse but fatigue is part of the
reason why I’m not that sociable. Talking and smiling takes a lot of effort
sometimes so I just prefer being a recluse.
Bye for now!
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