Hi. I was diagnosed with Essential thrombocythemia (ET) with JAK 2 two weeks ago. I have had good support from medical, family and colkeagues, but i am struggling to sleep. Myplatelets are quite low for Essential thrombocythemia (ET) although i do have symptoms. I am also due to have a hysterectomy in 2 weeks.
I am trying to be positive and keep working (I am a teacher for SEND children), but am not sleeping. The moment i try to sleep my mind races. I guess i am reaching out to this group for reassurance that this will reduce in time. I feel guilty about being off work, even though they are being really supportive.
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Hello @BronteK
A warm welcome to the forum, thank you for taking time to reach out and for feeling comfortable to do so.
My heart goes out to you, it must be a very uncertain time, and I hear your concerns regarding sleep, or the lack of it.
When first diagnosed it is a very confusing time, despite the various support structures out there. I felt similar to you (I was diagnosed with Chronic lymphocytic leukaemia (CLL) in April this year), and to compound this you mention your due a hysterectomy, so even more things on your mind.
If you haven’t already, please make sure your GP / Medical experts are aware of the way you are feeling and see what support they can offer you.
You may fins the section - Blood cancer: mind and emotions | Blood Cancer UK - useful, but beyond this, if you feel comfortable, you can always speak confidentially with our support services team for information and support on 0808 2080 888.
Please take good care and do feel free to let us know how you get on
Mike.
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Hi @BronteK I found your post because I was having trouble sleeping and was doing some research! I was diagnosed with Essential thrombocythemia ('ET') with JAK2 in the Fall. My main symptom has been fatigue. The fatigue has disrupted my sleep. I do pretty well getting through a shorter than usual work day (I am a college professor and I can pretty much choose what times I will work) but I have started wanting a nap of an hour or two around 6 or 7 pm. That was never my habit before. I usually have a cocktail (not too much but something tasty) which relaxes me and leads me to sleep. The nap is not really a good routine, my wife and I are usually watching a baseball game or movie and I miss a lot of it–and then it’s hard to fall asleep and stay asleep at a normal bedtime. I don’t really want to give up my cocktail (I have become a pretty good mixologist and my wife enjoys my creations too).
For me the biggest issue with Essential thrombocythemia ('ET') is that I have always been someone who gets asked to do extra work (lectures, journal reviews, committee work) and who has liked being really busy doing things that I enjoy and are meaningful. I have worked on saying NO to the extras and my colleagues know that I have fatigue and have had to cut back. I am 71 and have done more than my share for years so they have been understanding without knowing full details. I have also cut back on professional travel, long days at conferences and on planes and airports are more challenging.
I’m near the end of my semester and when I have a gap before summer classes, I want to try doing light exercise in the afternoon and seeing if that might give me an energy boost. I belong to a gym and love working out but have not been since my diagnosis.
In your case I know you were dealing with having a hysterectomy, I hope that went as well as possible and that you are doing well. I constantly have things on my mind as well, mainly trying to help my sons and granddaughter thrive, and that can make sleep a challenge.
Take care and I have found that there are good and helpful people on this site. Hang in there.
Bill
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Hello @BronteK
Apologies for the delay in replying.
We are so sorry to hear about your diagnosis of Essential thrombocythemia ('ET') and that you were having trouble with sleep.
It’s reassuring to hear work are being supportive and it’s important to be kind to yourself and not feel guilty about this time off at all.
I can see that both @GenesisDevice and @ProfessorJAK have left really helpful comments, I just wanted to ask how you are doing now? and to share our page on Sleep problems | Blood Cancer UK as this contains some tips that may be helpful to improve sleep as well as information about what causes sleep problems, advice to help with well-being and questions you may like to ask your team too.
We hope you are doing well.
Warm wishes,
Emma (Support services nurse)
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