Leukaemia Care Fatigue Day

[Pauline43]

I said I would report back on this Information Day in Sheffield - here goes! The speaker throughout the day was Dr Anne Johnson, a consultant occupational therapist at the Bath Centre for Fatigue and also a Research Fellow and lecturer at the university in Bristol. She was extremely knowledgeable about her subject and communicated it very well. She described what fatigue is and it’s impact and gave ways of coping (establishing routines, pacing and prioritising, sleep habits, relaxation and exercise etc). Finally she discussed the expectations we have of ourselves (guilt, low self esteem) and how to communicate how we feel to others. There was also an excellent talk by a patient on how he deals with fatigue and his strategies. The section on fatigue on the MPN voice website covers the subject well but I think I learnt a quite a lot by going to the information day. It gave me time out to think through things and I didn’t fall asleep after the lunch!

[EleanorPV]

Oh thanks Pauline43. I’m going to the fatigue day in Edinburgh.

[Pauline43 in reply to EleanorPV]

Hi Eleanor. I am sure you will find it useful. I came back with lots of booklets and work sheets that we did on the day and activity/ sleep logs to use at home.

[mhos61]

Glad that you found it worthwhile.

[Wyebird]

Hi Pauline, we did text about the possibility of going to this together. I kept a photo of your text but closer to the event I couldn’t find it. I decided not to come because my blood nurse referred me to a fatigue clinic attached to my hospital which I’ve found helpful. I’m really glad you found it useful.

[Pauline43 in reply to Wyebird]

Hi. I’m sorry it has taken me so long to get back to you. How are you finding the fatigue clinic at the hospital? Is it an ongoing course or just one visit? I’ve read all the literature I was given at the ‘Coping with Fatigue Day’ but I have to admit that I haven’t started filling in the hourly log to record activity, rest and sleep yet! But I do mean to! Pauline

[Wyebird in reply to Pauline43]

Hi I had an initial interview with an OT. It should have included a physio but she was off sick. I have an appointment with just the physio in 2 weeks. I’ve had to keep a 3 week diary of my daily routine. I am more interested in seeing a physio so that I know what to expect of my body. The OT was lovely and I’m looking forward to the next appointment and set targets

[Bluetop]

Thanks for taking the time to explain the day.