What fatigue feels like

Fatigue is one of the most commonly reported symptoms in PSC

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!’

Want to share?

Tell us about your experiences of living with PSC

Want to share?

Tell us about your experiences of living with PSC

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