Hello, I have not introduced myself (but will do on the appropriate forum), though I have posted.
But briefly, I am a recently appointed ambassador and looking forward to contributing more in the future. One reason I have been not contributing so much this month is…guess…yes, fatigue! It is a difficult topic, but one that resonates with so many blood cancer patients. I attended a seminar last year on this organised by our friends at Leukaeamia Care. It was interesting to get many contributions from people, and here is a brief snapshot of the contributions. I have also included some of my own opinions on the subject:
- Learn to be kind to yourself: Do not beat yourself up about it. Make time in the day to treat yourself or do something which you enjoy or helps deal with your fatigue (e.g. exercise. more of which shortly)
- Cancer related fatigue is now a recognised symptom of what we have to deal with, and do not listen to anyone who tells you otherwise. Of course the reasons can be complex and individual differences exist, but there is a common thread and even if it has not been proven scientifically (how is it possible to prove something that relates to perceptions), most specialists have a good appreciation of it.
- Learn how to recognise (or even describe it): At one of my appointments, when I described my symptoms my specialist immediately chipped in with 'Yes, that is definitely your Chronic lymphocytic leukaemia (CLL)"
I charectirsed my fatigue as follows:
i) Unrelated to lack of sleep (I can deal with that through…sleeping!)
ii) Sudden onset. One minute I was feeling fine, energetic. Next I felt the need to sit down, and doing simple things seemed like an effort. Sometimes even felt the need to lie down. Because it happens suddenly, I wonder if I am just being lazy…but see first point.
iii) My limbs felt heavy. Even lifting an arm felt like an effort.
iv) Slightly lighted headed.
v) People in the room seemed far away. I am outside looking in.
vi) Finally, I can only truly recognise this sort of fatigue by comparing it with how I feel when I am fine. Then I start to say things like 'ah, right, now I can do things again…this feels great. Now I really know that I was not feeling OK before.
- If you are still working (like me), then do sort out something with your employers (flexible working for example). They have an obligation of care. I managed recently to get my employers agree I could work from home.
- I know this is hard sometimes, but try to remain positive and remember the feeling will pass. If you can raise a smile or make a joke with a friend it can help tremendously.
- exercise if you can, Again, it can be hard to get out the door (I found this recently), but once outside I find it refreshens me right away.(Recently, you also get a chance to fly due to the storms, Just wait for an appropriate gust and watch with delight as you take off. But seriously, be careful at the moment).
Once you have followed some of the tips above hopefully it will help. But always discuss with your specialist. Hopefully they will be able to reassure you, but the discussion can help if it is an indicator of something changing with your condition.
As for me, I am currently on a clinical trial for Chronic lymphocytic leukaemia (CLL). And I am sure my fatigue is related to this, since whilst I did have some fatigue before it has definitely become more frequent. I do not even feel like reading when it is bad, let alone contributing. But today is a good day, hence this post. I am fairly sure it is just a temporary thing in my case. Probably fighting off some bug as well.
What helps most for me is running. I am currently training for my third marathon and have done a lot of fundraising via running for Bloodwise. Will be back again for the Great North Run! I have written about this in my first post somewhere on the list.
Enjoy the good days
I hope you found this post interesting and helpful. If not I will have word with the author