Fatigue is one of the most commonly reported symptoms in PSC, but not everyone experiences it. It’s difficult to describe, let alone understand. Here’s what people with PSC say:
‘I'm extremely tired. It's not made better by an early night. In fact; all my nights are early anyway.’
‘Some days it’s not as bad, but it's never what I would call normal. I suppose I'm lucky as I retired last year. However, without PSC I would have kept working part time.’
‘Although I feel permanently tired, I prioritise what I want to do, and I plan rest time. If I do that, I don’t feel so guilty about doing nothing. Luckily, my partner understands.’
‘I have good and bad days with fatigue. I can literally sometimes sleep the clock around. I can no longer work because of it.’
‘I work full-time, and I crash at the weekends. I want to work and that’s how I manage it.’
‘I struggle to get up in the morning.’
‘If I push through it, I find I am tired out for days afterwards. I have learnt and accepted that I have to manage my life.’
‘I can sometimes get 12 hours sleep. However, when I wake up, I feel as though I haven't even been asleep and feel just as tired as I was the night before.’
‘I decline invitations to go out at night because I am always so tired. People have stopped asking me now.’
‘If I know I have a day where I am doing something, I plan to do nothing the next day if I can. Even just talking to people exhausts me.’
‘I wake up after a ‘good night’s sleep’ and feel like I haven’t been to bed. I can’t remember a time when I felt refreshed when I woke.’
‘When I'm tired, my muscles hurt like I was walking all day. However, I sit in an office.’
‘My arms and legs feel like they don’t fit me when I am tired.’
‘The tiredness can come on quite suddenly, like when I am shopping for example, and I just need to go home and sleep.’
‘I feel like I have permanent jet lag. The silver lining is that when I fly, I don’t suffer with jet lag like everyone else because it is normal for me!’