Waldenstroms macroglobulinaemia

Recent diagnosis
1

Is there anyone who is struggling with W.M. fatigue?

1 Like
2

Hi @Toni welcome to our forum and thanks for posting.
I hope others with experience will help you.
However with most blood cancers we live with fatigue.
I will copy you the link to the Blood Cancer UK information on fatigue
Blood cancer and fatigue | Blood Cancer UK
I have to go out now but I can respond further this afternoon, depending on if you have further responses.
It is my specialist subject !!!
Look after yourself and please do keep posting, I look forward to hearing more about you

1 Like
3

Hi @Toni
I have replied to you on the other post Waldenström Macroglobulinaemia (WM).
Take good care
Gemma

2 Likes
4

Hi @Toni It’s me again.
Very personally, not a medical response,
I do not deal with what personally stresses me well.
I was diagnosed with another blood cancer 20 yrs ago and I have found that I have got to know myself and how I tick since then.
My fatigue can set in immediately or up to 48 hrs after an event
I do not deal with what personally stresses me well
My fatigue can come on by what personally stresses me, emotionally physically, medically or practically.
Sometimes I need to rest, nap or duvet dive other times fresh air a reasonable exercise helps me.
I found keeping a sort of diary helped me with when, what I did and how I felt.
I am a walker and Pilates girl.
The Blood Cancer UK support line is there for you on 0808 2080 888 if you need them.
If you are in employment your rights at work are that you’re protected by The Equality Act (in England, Scotland and Wales) and the Disability Discrimination Act (in Northern Ireland).
For more information about your legal rights at work, visit acas.org.uk or call 0300 123 1100. You can also read the article Acas wrote for us about blood cancer and your rights at work.

Reasonable adjustments

If your employer knows about your diagnosis, then legally they have to consider ‘reasonable adjustments’ to support you at work. This includes adjustments that protect your health, such as allowing you to work from home, or adjusting your duties or hours to help you with side effects such as fatigue.
You can ask for reasonable adjustments at any time, not just when you’re first diagnosed or when returning to work. It’s helpful to have regular catch-ups with your manager to check how things are going and see if you need any other changes.
Examples of reasonable adjustments include:

  • support to work from home as someone who’s at high risk from covid
  • a phased return to work (building up your hours gradually after being off sick)
  • taking time off for medical appointments or telephone counselling
  • taking more breaks
  • limiting work that you find challenging as a result of your diagnosis
  • changing start or finish times
  • reducing your working hours.
    The main thing is to be very kind to yourself and look after yourself and please do keep posting.