Good evening all. I’m just sitting here yawning away remembering the struggle I had to get to sleep last night, followed by the five times I awoke during the night, facing the same struggle to get back to sleep each time. It’s exhausting! This seems to be a regular occurrence. As much as I can keep my mind occupied during the day, at night the lymphoma is the only thing on my mind and I can’t shake it. Listening to music or a gong bath sometimes helps but I can’t remember the last time I have slept for more than a couple of hours at a time. With that in mind, I thought it might be useful to share some tips. Do any of you have the same problem? Has anything helped or am I the only one who struggles with this - hope not, otherwise I’m in trouble ! I’m looking forward to hearing from you all! X
I have periodic issues with getting to sleep as well. The thing I’ve found works for me is listening to audiobooks. I find having to concentrate on the plot is a good way to stop focusing on some of the more challenging things that are going on. I know how difficult things can be when you get a prolonged spell of sleeplessness and it’s not just physical exhaustion but also makes managing the negative thoughts infinitely more difficult.
All the best, Peter
Hi @Dyslexicprof. Thanks so much for reminding me of this. I’ve tried audio books in the past but not for a while. I never managed to finish a book as I had to keep rewinding. But, in hindsight it probably was one of the more successful things I tried so I think I should give it another go.
Lack of sleep really is one of the biggest challenges isn’t it. It makes everything so much harder to manage - I’m definitely experiencing that at the moment!
I’ll let you know how I get on. Thanks again X
I sympathise with you, I have the same problem.
I have frequent nightmares as well. I fall asleep very quickly but am awake again in a couple of hours. I struggle to get back to sleep again.
By 4am I give up and get out of bed fraught with stress and anxiety.
I have a regular prescription of diazepam and usually have to take a tablet then to help me calm down., and read for a while.
By lunchtime I’m exhausted and have to go back to bed to catch up.
This has been going on ever since I was diagnosed.
My cancer is incurable (Myelodisplasia) which will progress to AML and my death.
This fear invades my subconscious at night and there is absolutely nothing I can do to prevent it happening.
Good luck and best wishes
Good morning @Blackhat. It’s good to hear from you. All of that rings a bell. I’ve been getting up early and napping In the afternoon if I need to but I am worried how much worse I’ll feel when I return to work and can’t have that afternoon nap!
It must be really hard for you. Your diagnosis causes fatigue as well doesn’t it, and it’s hard not to think about the years ahead. I know how lack of sleep just adds to this, plus the current situation doesn’t help with added worry!
Have you ever discussed this with you team or had any other support besides the medication? Sleeping tablets have been effective for me but I do wish someone had a magic sleep wand. I suppose different things work for different people, that’s why I was keen to hear from others. This seems to be such a common Issue with cancer patients (Understandably) and I’m not sure there is an answer.
Thanks so much for sharing and if you ever get up early and need a chat I’m sure there are a few of us who will be up.
Take care of yourself x
Brilliant post @Nichola75, @Dyslexicprof and @Blackhat I wish I knew the answer. My problem is that my mind just takes over with my anxieties, fears and thoughts, ones I am too familiar with and others come out of nowhere. The darkest hour is just before dawn (Thomas Fuller, Mamas and Papas et al) and it is so true.
After a sleepless night I then get into a bad sleep/wake routine to make up for it which then exacerbates the whole situation, especially with fatigue as given half a chance I will have a nap in the afternoon.
I think my upbringing did not help, we were not allowed any emotions at all, good little girls were ‘seen and not heard’.
I think I am too capable of compartmentalising my fears and putting on the mask to function during the day and at night my fears can just run riot.
We will not even go into my bladder and it’s frequent night time needs which wake me up !!!
Hi @Erica, that all sounds so familiar. Like you, I got used to just getting on with things when I was little and still find it hard to say exactly what I’m feeling - stiff upper lip, carry on and pretend everything is ok. It’s all
So exhausting though isn’t it!
How are you with talking about things now ? It must be so great that you can share things on here!
From why I’m getting we all seem to experience this issue - heightened at different points and in different situations. At least we can use this forum to talk about it and not feel alone X
Hi @Nichola75, I don’t think ‘holding it all in’ does my health any good and I get delayed health issues.
When I don’t sleep I really do not function well during the day and then my clock gets all out of kilter. In lockdown I have really tried to keep to a good routine and even when I have a bad sleep night I get up at the same time. I think I have slowed down and I hope I am less stressed.
I come from a family of night owls with only me needing my sleep.
Yes, I really need this forum to share what it is really like to be me as my husband cannot take my health thoughts and emotions and I thought I was the only one in the world.
Technology really has its positives doesn’t it. We all need somewhere just to be ourselves and to be able to say what we need to. Bottling things up is not good. Like you, this is something I still need to get better at. We are a work in progress! X
I’ve found guided meditation apps help. Also having Epsom salt bath before bed and I have a sleep pillow with lavender and hops which are said to make you sleepy.
Hi @Magwitch1. A sleep pillow sounds interesting. I’ll have a look into this. How are you?
Hi Nichola. I used a couple of things, with great results. One is a hypnotherapy recording to relax you and clear your mind before sleep. You can get a free download of a very good one on the Sarah Arris Cognitive Hypnotherapy website. Just google her and there is a section for free downloads on the website.
The other thing I used is an app with lots of free recordings using a technique called Tapping. It is a brilliant way of calming the mind and stopping those thoughts by distracing the mind. The app is called The Tapping Solution. Again, a google search will take you to their website.
These are totally free and I’ve been using hypno recordings and tapping on and off for over 3 years now since getting ill. They really do work and have not only helped me with sleep but also with general anxiety and even helped bring me back down after some severe panic attacks I had shortly after diagnosis.
Morning @Fozzie123. I’ve never tried a hypnotherapy app so I might download this and give it a go. The tapping sounds really interesting and seems to have been useful in helping you in a number of ways. I find it really interesting how you talk about how it helped with panic attacks. I still suffer with these at different times so this is definitely a strategy I’ll look into. I did experience this a little in some counselling I had (EDMR) which used tapping and it was successful. I can see how it can be used how you describe. I think it’s a case of trying new things and finding what works for you. This discussion has given myself and others lots of different things to try and that was what I was hoping for. I can’t wait to have a go and let you all know how I get on. Also to find out if anybody else tried some of the things you have all talked about.
How are you doing at the moment @Fozzie123?
I’m good, thanks. My anxiety has pretty much gone now. I still suffer from fatigue and need to sleep a couple of hours every afternoon but sleep well through the night too.
I’m lucky that I live near to Charing Cross Hospital and the Maggie’s centre there arranged for me to have some sessions with a counsellor which helped as well. I tried pretty much everything that was suggested and am not sure of it was a combination or any specific thing but I am much calmer now and haven’t had a panic attack for over a year.
I hope one, or all of the things you try will help. Wrestling with our own thoughts can be an unpleasant place to be at 5am.
That’s really great @Fozzie123. Sounds like you have been really proactive in getting support and found something that works for you. I’ll let you know how I get on. Thanks again. You take care x
Yes, @Fozzie123, I believe in trying everything that is suggested with an open mind. I am so glad you are feeling much calmer now and that you haven’t had a panic attack in over a year, you sound very self aware. Aren’t you lucky to live near Charing Cross Hospital and the Maggie’s centre.
There is a lot on this forum about fatigue which I found very useful.
Take care and we are here no matter how you are to just share what it is like to be you.
I’ve been the same since January and it feels as though I’ve been through the mill. Turned to my GP in June, she took bloods to check a few things. All ok ish. She has been very sympathetic, trying light sedation to hormones, sadly nothing worked, I spoke to another doctor who seemed to know a lot about sleep disorders, I’ll list what he said, although you’ve probably tried them all.
Never go to bed unless you are really tired as you won’t get to sleep.
If you need a bedtime drink try Horlicks - no caffeine.
When you decide to go to bed don’t let anything distract you - even things like getting clothes ready for the morning.
Make your bedroom nice and cool, dark too.
Switch off computers etc an hour and a half before bed.
Try reading but if you find you can’t concentrate try watching a fairly relaxing film (sitting as far away from the screen as possible).
Try not to nap in the day as this will take away from the nights sleep.
A warm bath can help (it didn’t me though).
There was more but I don’t have the printout with me atm.
What I’ve added myself
I bought a really good soft eye mask from Amazon, it blacks out everything and is really comfy, feels like it hugs me .
I’m also trying ear plugs, have tried a few as they kept popping out, have found some narrow ones which are helping.
With this hot weather my sleep isn’t good but when it’s cooler I’m sleeping for 3-4 hours!! I have a fit bit watch which shows me how I’ve slept. What I’m doing is getting a few hours, seem to wake up around 6am, have a drink of water then go back to sleep for about 3 hours. If you’re working you obviously can’t do this. Forgot to say I don’t get tired till between 2-3 am but I’m preserving along these lines at the moment.
Good luck and I hope I’ve helped a little xx
That should read persevering! Although I’m managing to sleep for a few hours I do wake up but manage to get back to sleep - sometimes with a struggle xx
Hi @Angie, nice to meet you. It sounds like you’ve had a really tough few months so I really appreciate you taking the time out to offer advice to me!
There are some really good points here - I especially took note of turning phones off etc before bed because I know if I can’t sleep the first thing I do is grab my phone and google. I’m going to make a conscious effort not to do this anymore. Also, I’ve often contemplated an eye mask. The sentence ‘it feels like it’s hugging me’ has tempted me.
How are you doing now? Has anything improved in the last few months? I hope you have support around you. Remember the
Blood Cancer UK Support Line is always here.
Thank you so much for all off your advice and suggestions. I will keep you posted on how I get on. Take care of yourself and you know where are if you need us X
Hi @Angie a great big welcome to our forum, I find it supportive and informative. Thanks for the handy hints to get a nights sleep, I shall definitely try them. How have you been during lockdown?