After an amazing Christmas break, I returned home with a long list of jobs to do and people to see before I have to go back to work next week. So far I’ve been able to tick very few items off my list, as a bout of energy-sapping fatigue has gradually crept up on me.
Yesterday, I planned to go to the cinema in the afternoon with Niamh, then to a local pub with a friend, to see another friend, singing with her band. When I woke up, I realised I didn’t have enough spoons to get through both, so I cancelled my evening out and had a lovely afternoon at the cinema followed by a quiet evening at home.
This morning I awoke after 9 hours sleep, feeling exhausted and heavy. My feet and lower legs feel cold and dead. After struggling for a few hours, I cancelled my plans for the day and went back to bed.
I hate the way this disease is robbing me of being able to do what I want and of time with people I care about. I am comfortable with my own company, I really don’t mind being on my own, but I’m also a sociable person and my friends and family are important to me.
One of the things I have done to help me cope with bouts of fatigue is to reduce my hours at work, so when the new term starts I will be working 4 days a week instead of 5. I’m a bit concerned about how this will work out financially, but I’m hopeful I’ll manage and it should give me more time to rest, to see friends and do all the other things I need to do.
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I wouldn’t usually wish to link to the Daily Mail, but they have written a piece on Caroline Wyatt and her experience with HSCT. The piece also refers to the sad death of Nyta Mann, a BBC political editor who chose a different route when MS took over her life.