Hi,
After nearly 4 months off work due to being hospitalised, I am noticing that my Fatigue is gradually getting worse. I still have an ongoing musculoskeletal chest problem, along with low ferritin levels. Last bloods gave a reading of 11 ferritin level and my fatigue is awful, not everyday but when it hits it makes it hard to even get myself out of bed. When I walk it feels like my legs are two concrete posts, literally have to drag myself to do simple things. I recently joined a Fatigue group at my local Hospice, hopefully I gain something from these sessions and learn to how to cope when the Fatigue hits. I am also due to see my consultant soon, I will discuss this with him and hopefully there is a positive outcome. I do know that this won’t just vanish but for me it’s all about feeling better, day to day life needs to improve. My Essential thrombocythemia (ET) is monitored every 3 months and I currently take daily Aspirin. Just wondered if anybody else with Essential thrombocythemia (ET) struggles with fatigue.
Chris
4 Likes
Good afternoon @Fleming97 , and everyone else. Chris, I know what you mean about the fatigue, and also the difficulty in trying to explain/express just how debilitating the fatigue is to those who don’t suffer/endure/live with it.
I suffer from Essential thrombocythemia (ET) too, having been diagnosed back in March of 2018, some 6 months after my (to date!) first heart attack. Currently I am feeling absolutely and totally knackered, not helped by having just moved house over the last few days!
I am currently on 3 Hydroxycarbamide capsules per week, along with a Besremi injection every 4 weeks, plus a bunch of other heart medication, but I keep on smiling as well as working full-time, although that last item is becoming more and more of a strain to me.
I guess that what I am saying is that you aren’t alone in your fatigue and I’m sure that other “Forum Followers” will chip in with their own fatigue reports.
Meantime, take care, stay safe be kind too yourself and keep on smiling.
Best wishes,
Jimbo165
4 Likes
Hi @Jimbo165 thanks for your reply. It seems i am not alone with this fatigue issue, sounds like you’re experiencing much the same. It’s so frustrating for me being a Postman for a living and usually walking ridiculous distances everyday, to now struggling to get to the local shop. Thanks for your words and yes I always remain positive. I hope to get on that road to recovery soon, with my issues being complexed I fully understand that I will need to be patient.
Many Thanks
Chris
2 Likes
Hello @Fleming97
Thank you for taking the time to reach out and post in our forum.
I’m sorry to learn about your circumstance, and my heart goes out to you.
I am a Chronic lymphocytic leukaemia (CLL) patient, and although this is somewhat different, I can relate to your experience with fatigue.
My circumstance is that I was diagnosed in April this year, and I do find that if I sit on an afternoon in a comfortable chair, I will nod off for 30 minutes to an hour or so. This could just be may age, but I’m tempted to relate it to the Chronic lymphocytic leukaemia (CLL). I tend to just go with it, if I need the rest, I need the rest.
You will find a number of posts covering Essential thrombocythemia, by typing the same in the search bar at the top of the forum.
If you feel you want to discuss the matter in more detail we have nurses on the forum who can support and of course done forget you can always call us and speak confidentially with our support services team for information and support on 0808 2080 888
The forum is extremely supportive and friendly place and I hope you keep in touch
Take good care of yourself
Mike
3 Likes
Hello @Fleming97
Thank you for your post.
We are sorry to hear about your diagnosis of Essential thrombocythemia (ET) and that you are experiencing fatigue.
We can imagine this is frustrating for you. Do let your consultant and team know how you are feeling so that they are kept up to date and will aim to support you as best they can. It sounds positive that you have joined a fatigue group and we hope that this is useful for you.
We are pleased to see others have shared their experiences with you. Sometimes it is difficult to get the balance right of resting when you need to, but also remaining active.
You may find our pages on Fatigue | Blood Cancer UK and Looking after yourself with ET (essential thrombocythaemia) | Blood Cancer UK helpful to read over as they contain small hints and tips to help navigate fatigue.
If you would like to talk any of this through, please get in touch on 0808 2080 888.
Take care and warm wishes,
Emma (support services nurse)
3 Likes