How are you all?
I recently had a few days of bad sleep and wondered how you all find SLEEP in general and with pending changes to shielding?
Is challenges with sleep something you experience?
Have you found your sleep has been affected by treatment/SCT?
Is the shielding and changes in the guidance having an impact on your sleep?
I have always had difficulties with sleep during my chemotherapy and immune therapy treatments, especially when on high dose steroids and post SCT. I wondered if there was anything others do to try and help them selves with sleep challenges that they would like to share?
As I have had issues with sleep for a number of years I wanted to take this opportunity to share some of the things I do. Although some may seem generalised or generic I may have found something that works for me that others have not tried. Similarly there may be something you guys do that know one, including myself has tried before.
I thought this would be a good time to share our experience, hints and tips.
So I remember my sleep problems really becoming an issue in early 2017 after my first chemotherapy cycle and being moved on to different, higher dose steroids. This caused my sleep pattern to change a lot. From going to bed really later and getting up really late, which was not an issue because I still got 8 to 10 hours a night. I found the longer I was on the high dose steroids the more my sleep pattern changed. I began not sleeping until the early hours of the morning and was only getting a couple of hours sleep a night. It didn't help I had added issues with anxiety, agitation, restlessness and feeling 'wired' all the time.
Initially I fell into the trap of only sleeping the hours my body would let me have but realised it was having an impact on my ability to concentrate, communicate and cope with day to day life including treatment. So I got help from my GP with Sleep hygiene and started a journey on how to help my self.
I tried creating a bed time routine to encourage my internal body clock to recognise when it was time to sleep but I found the impact of treatment and where I was at with treatment was winning. I was overwhelmed with knowing that I needed a Stem cell transplant and this is when Insomnia become an issue. During this time I found the following things worked for me. I'm hoping by sharing this challenge I had pre-transplant, during and post will help others:
- I developed a simple bed time routine starting with turning the TV off at a specific time
- I normally turn my TV off an hour before bed
- using this time to tidy and wind down the racing thoughts in my mind
- I then took a shower
- made a hot drink (hot chocolate of course)
- putting an audio book or podcast on
- dimming the lights
- I found due to being in hospital so much I needed noise to sleep (a lesson I learned in time) So I went to bed with some calming music on.
- also used a lavender scent on my pillow which is calming
There are lots of other things that people try to support good Sleep hygiene some being;
- cooler room temperature in you bedroom
- create a calm environment
- try not to use your phone/Ipad/laptop in bed and avoid blue light
- go to bed and get up at the same time every day
- try not to spend all night in bed tossing and turning. I found that If I wasn't asleep within an hour of going to bed getting up and removing myself or putting the audio book back on I was less likely to get frustrated.
- I tried to spend less time in my bedroom, although I can appreciate it is hard with Chronic fatigue. With my ongoing chronic fatigue it is easy to opt for resting on the bed but I found I didn't sleep so well those nights and made the move to rest on the sofa with a comfy blanket.
- if you are able to freshen up your bed linen this is always a win for me! nothing beats a fresh set of bedding
The other important things I would suggest is trying to reduce caffeine intake in the evening. I'm not keen on coffee but I did go through a period of drinking a lot of Pepsi once I reduced this I found resting was easier.
What do you to try and help your self sleep? Do you have any tips or tricks that might help others? maybe you have challenges you wish to discuss!
All the best,
Online Community Champion