Hi @BobK99, I am glad you have now got a better package, I wonder if anyone else has had a similar experience to you, we await hearing. Take care.
The NHS option seems to be the £395 programme
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Well I’ve come to the end of my 6 week programme in Sleepstation, I understand that there are 2 weeks of support available if required.
I’m waiting to see what they come up with for going forwards.
I have very mixed feelings about the programme as a lot of the tips and techniques are ones that I’ve already used and are well documented. I did try them again but didn’t find any of them useful.
The getting up, after not getting off to sleep after 20 mins just woke me up!
The most useful thing I found was doing a wind down routine before bed. Turning the lights down, tv off, music on and some reading and guided mindfulness meditations. Also made my bedroom a whole lot darker and took the noisy catch off the bedroom door so it’s now quiet when my husband gets up in the night to go to the loo!
I think their support could be better, as I said before you get different people answering your queries and messages and I’ve ended up getting the same information given to me of not having my queries answered.
The sleep restriction part of the programme, which is the main technique, is very hard and also the filling in of diaries and logging your sleep does make you overly conscious of your sleep. I have got quite frustrated with it all at times.
Where am I at the moment , well this last week finally I’m getting between 4.5 & 5 hours + sleep and feeling a whole lot better.
I have learn’t some interesting things about sleep, like it’s normal to wake up during the night and we all sleep in waves. It has been described as like a dolphin going down and then coming up for air.
So have found that if I do wake I tend not to worry about it so much and go back to sleep.
It’s more important to go by how you feel after you’ve got up.
I’m still getting up at 5am and have got quite use to it and have found it useful for getting on with the day and getting things done.
We’ll see how things progress from here. I’m still hoping to improve the amount of sleep I get each night.
It will be interesting to see how you get on Bob as each of us is different. Good luck with it, it’s not easy and hard on those living with you, I got very irritable and grumpy! It’s not something I would recommend to do while working best to start it when you have some leave.
I have ordered a book about sleep from the founder of the Sleep School, can’t remember his name now. They have a totally different approach, so that will be interesting.
If anyone is interested in guided meditation I would recommend the Insight Timer app. They have a huge library of free meditations using different methods for all situations, along with music, white noise and sleep stories. You can build up your own playlist, give it a go it well worth it.
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Franco sleeping in chunks throughout the night, I have come to learn is quite normal. Apparently we all do it it’s just that if you have a sleep problem you notice it more, then it becomes bigger in your mind.
Having other people disturb you in the night really doesn’t help and I don’t think it would be petty to mention it, as you say they probably don’t realise how noisy it is for you.
The one thing I have learnt is the more you worry about not sleeping the worse it is as it just takes over, even to the extent of worrying before going to bed if your going to get any sleep.
So if you go to bed thinking your not going to get any then…!
One of the techniques in the sleepstation programme is desensitisation, it used mainly for snoring don’t know if it would work for the noises you get? The idea is that you record the noise and then play it back during the day so that eventually you get so use to it your brain ignores it. Well that’s the theory.
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Hi @AnnD, I was interested that we all in chunks and the more you worry about not sleeping the worse it gets.
Perhaps we all vary in the amount of sleep we need (I don’t mean want) and many people seem to think 5ish hrs is normal and achieve so much in the early morning.
We await hearing how you are in your new routine. Take care that is the main thing.
…I have just paid £29 for a 1 year subscription to an app called CALM.
I have had 7 nights of uninterrupted sleep, having struggled with sleep at the ‘appropriate’ time!
When I go to bed, I put a ‘story’ on, thinking ‘that’s sounds interesting’, then between 5 or 6 hours later I wake up astonished I can’t even remember what the story was about!
I feel refreshed after just a week - sleep deprivation is the worst! It was recommended by my sons partner and the app has a free trial for a week! I’m the typical cynic - ‘that won’t work!’ - try it, and see what you think!
Keep safe and well! Kindest, Adam
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Thanks Adam for your experiences, very interesting.
As Adam says sleep deprivation is the worst, has anyone else got any hints or tips?
I’m
So glad it worked for you and that you are feeling better for it! Let’s hope it continues!
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Thanks for sharing those tips! I tried the Calm app, and it works. Still, sometimes I toss in bed for hours to find a comfortable position to sleep.
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Hi @RolanGoblen and @lauMercury a great big welcome to our forum.
This forum is full of experiences and handy tips and I hope that you will also find it supportive, I do.
I hope you will both keep on posting as I look forward to hearing more about you both.
Look after yourselves
Have you tried changing your pillow cases
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Hi @Ashleyjaz welcome to posting and you have just shown a value of our forum by suggesting an idea for fellow forum members.
I really look forward to hearing more about you, thanks for posting and really look after yourself
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Hello all. I am signing in here in May 2026, have been having trouble with sleep. So great to hear others discussing this issue. I am still working full time as a college professor, so for me the sleep troubles are in a different context on days when I need to be well rested to go to work, and on weekends. I have very frequently had problems where I nap in the early evening, go to bed at a reasonable hour, then wake up at 3 or 4 AM without having had enough sleep. I can live with that on the weekends, but during the weekday I can’t really go through a good workday if I can’t get back to sleep. So I have generally been resorting to taking a Benedryl, which knocks me out and gets me back to sleep (plus helps with chronic nasal congestion and sinus problems) but that is not a good solution. On the weekends I can live with not getting a normal night’s sleep and just sleeping as I wish later. But it is not good.
I am also trying to figure out, how much of the sleep troubles are related to the illness (in my case, Essential Thrombocythemia or Essential thrombocythemia ('ET')) versus my worry and rumination about trying to get things done that are hard to do with the fatigue I feel.
It is so good to read the comments of others and to know that others are challenged by these same issues. Be well my friends.
Bill
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Hello there @ProfessorJAK, sorry to read about your trouble with sleep. This is sadly pretty common from what I’ve read around the forum and this thread shows many of us have our sleep affected by all sorts, myself included—after lifelong insomnia, I can empathise with how a lack of good sleep can affect our daytime energy.
Something that may be of interest to you as a fellow survivor of Myeloproliferative neoplasms ('MPN') is that my (second) haematologist put me through a “sleep study” to check for sleep apnoea, where I simply wore a heart monitor overnight which took readings. This was free with my health insurance as it was considered preventive, perhaps for you too? Apparently, from what my haematologist told me, apnoea affects the amount of oxygen reaching the blood and thus getting pumped around the body, which can cause extra strain on hearts and other side effects like decreasing energy and dizziness.
Thankfully I did not have apnoea but did get a smart ring (Oura) to help me finally figure out my sleep issues. Smart watches can do a similar thing. The smart ring taught me that I’m actually an early bird and so I adapted my sleep and day routines to that and now I am back to pretty normal energy levels (for me) even with Polycythaemia vera ('PV').
One tip I learnt many years ago when I worked very early mornings on a farm was that taking early afternoon siestas, no longer than an hour, would give me an energy boost but would not affect my nighttime routine or sleep quality. So I take those occasionally even now, which my dog loves!
Anyway, that was all to say that it might be worth considering checking for sleep apnoea, and that having a smart device to track sleep can help too.
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Thanks my friend @Duncan I wear a FitBit and it monitors my sleep and other functions very nicely. I do not show any of the characteristics of sleep apnea, but it is certainly great to keep an eye on such issues.l Be well.
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Hi, I’m new to the forum so please bear with me.
I have Jak 2 Essential thrombocythemia ('ET') which is being reasonably well managed by Peg interferon, platelets down to 460ish having been as high as 950.
My partner bless her is very inquisitive around potential root causes and one of the areas she thinks may be causing my problems is my snoring and sleep apnea (not formally diagnosed). I was wondering if this was an area anyone had any experience of and was aware of formal studies or data analysis in this area.
thanks for any feedback.
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Hello there @DaveB, welcome to the forum. I’m sorry to read of your diagnoses with the JAK2 gene mutation and Essential thrombocythemia ('ET'), but you’ve come to just the right place.
Like you I was diagnosed with a JAK2 mutation and then Polycythaemia vera ('PV'), which you likely know is closely related to Essential thrombocythemia ('ET') as they are both Myeloproliferative neoplasms ('MPN') and often have similar risks and treatments. I’ll share the Blood Cancer UK information about MPNs here and their great research about Essential thrombocythemia ('ET') here: Essential thrombocythaemia | Blood Cancer UK
May I just say how positive it is that your platelets have come down so well, that’s got to be a relief. When my own blood cells are in the normal ranges for people without blood disorders it makes me feel mostly normal too! With Polycythaemia vera ('Polycythaemia vera ('PV')') it’s my haematocrit I keep an eye on and if it’s under 45 % then I can relax 
Funnily enough, my haematologist tested me for sleep apnoea as I had terrible insomnia. He told me that apnoea can negatively affect those of us with Myeloproliferative neoplasms ('MPN') as it decreases the amount of oxygen getting to our blood and thus less gets pumped around our bodies, which doesn’t help our energy levels.
From what my haematologist tells me, the gene mutations that cause our Myeloproliferative neoplasms ('MPN') were likely triggered many years ago, maybe even in childhood due to carcinogens around us. Do check this with your specialist I’d say as we forum members can’t offer medical advice. That’s a sort of relief to me—it’s not something I’ve done, or not done enough of, just an unlucky twist of chance.
If you’d like to speak with the lovely and very learned specialist Blood Cancer UK nurses about any of this or anything else like resources available to you as a blood cancer survivor then their free number is 0808 2080 888.
Do have a further look around the forum @DaveB, you’ll find many of us here living well with Myeloproliferative neoplasms ('MPN'), and please keep us posted about how you get on.
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Duncan, Thank you for the kind welcome to the forum and the informative links you have provided, is is appreciated.
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You’re most welcome @DaveB, just let us know if you want pointing towards any other sort of information.
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