As part of the North Bristol Trusts program for CFS/ME they can send you on various courses, to begin I was sent on the foundation course, which consists of two 1 1/2 hour long sessions.
I wanted to document the whole process, as I really had no idea what to expect and I am aware that a lot of people do not have access to such services:
In the first session we talked about: Symptoms, CBT, GET, Activity Management (Link). The second session I have split into two posts, this being the second the first however was mainly on rest and relaxation (Link).
The main focus on this session however revolved around Sleep Management and then talked a little about Stress Management at the end.
Please click the link below if you wish to download the foundation course 2 hand out provided:
This was the main focus of this session. We started by listing all the problems with sleep we have as a group, which turned out to be a vast amount:
- Lots/too much sleep
- Poor quality of sleep
- Unrefreshed Sleep
- Disturbed Sleep
- Weird/ Vivid dreams
- Frequent waking throughout the night
- Problems getting back to sleep
- Getting to sleep / Insomnia
- Feeling awake at night
- Sleeping in the day
After identifying we have a lot of wide ranging sleep issues, the OT explained that when working with sleep, it is a long process. Sometimes takes a few weeks to kick in. Just keep at it even tho you don’t think it’s working.
An analogy that I loved was that: Working on sleep is like gardening, you plant a bulb or seed, you don’t look at the plant pot the next day and feel disheartened because you don’t see any progress. That is because when planting in your garden you don’t expect immediate results. It is the same with sleep. So just keep at it.
This is a pretty good place to start I think, when we sleep we go through various types of sleep, light sleep in which we dream but then a deep sleep (REM Sleep) in which we are very hard to wake. Naturally through the night we all go through these cycles in waves.
Whilst there it is common thought that people need 7-8 hours of sleep a night we actually only need 4-5 hours sleep to survive, which is why military shifts are often in 4 hourly slots- but just because we can survive on that doesn’t mean that we will feel good.
An interesting fact that I learnt was that the average person wakes up 12 times a night, but they never know it!! When you go through a sleep cycle we have evolved to wake up, the body wakes up takes note of what is going on and then if there is no danger, goes back to sleep, and the person never remembers they have woken up.
Historically people have had a first and second sleep, where they go to sleep wake up in the early hours have a drink or something to eat and then go back to sleep for their second sleep. This is something that as time as gone on has been irradiated from our daily lives but is useful to remember, that it is normal for people to wake through the night. What we need to work on is being able to get back to sleep straight away.
So all that being well, we know a bit more about how sleep cycles work and that working with sleep and it is a long term not short term process, so we need to just keep at it, but what is IT?
Well the OT identified three main areas to work on:
1. Habits and routine
I think that this is the one in which we can effect the most. It is the trying to go to bed and getting up at the same time each morning and night. As well as what we do throughout the day especially leading up to bed to get us in the right mindset to sleep.My morning and night routines are as follows, although I have to be honest my bed time and up time tend to move by an hourish:
Step 1- Have a bath with epson salts if I am in large amounts of pain
Step 2- Get into bed for about 11 and settle down
Step 3- Read for about 20mins – if using an e-reader make sure it isn’t backlit
Step 4- Play a short sleep time meditation on the buddify app (link)
Step 5- Pop my ear plugs in and carry on with breathing exercises and dose off probably around 12- 12.30.
In all honesty at the moment the above routine has really helped me, I have suffered from really bad insomnia in the past, and this works for me.
I think one really good thing to consider, is that if you start to toss and turn and stress about what time it is, is to actually get up or failing that sit up with the lamp on for 20mins or so potentially do more relaxation exercises on an app or even the ones you can download, in my NHS Journey Pt 3 (Link).
Before I guide you through my morning, I need to point out I am not a morning person nor have I ever been, I am a night owl through and through, so with CFS mornings have become particularly difficult.
I always wake up feeling like death like all I want to do is just sleep forever and that is why I have the following routine.
Step 1- Wake up, I tend to wake up naturally around 9am but I have a standard alarm set for 10 but I rarely need it.
Step 2- Play a wake up meditation last only a couple of minutes
Step 3- Assess how awful I feel using CBT approach (Link), if feeling ok jump to step 5.
Step 4- Lie in bed playing on phone or laptop- but never going back to sleep as I have found it just makes me feel worse, and then repeat as necessary.
Step 5- Get up walk to the kitchen and get a tea spoon of coconut oil and begin oil pulling (Link- Coming soon)
Step 6- Whilst oil pulling use the bath room and then back to the kitchen to make a breakfast smoothie (Link), after 10 mins spit the oil in the bin and swill mouth with water to remove the remnants of the oil.
Step 7- Sit on sofa watch some TV or play on laptop (A low level activity of your choice) drink/ eat breakfast, for 30mins-1hr or longer if needed.
Step 8- Feeling a bit better than upon first waking go and clean teeth & have a shower.
Step 9- Go about planned days activities within my points limit (Link)
This whole process on a good a good day will take me an hour, on a medium day 2-3 hours on an awful day the whole day. I get my partner to open the blinds when he leaves for work at about 7.45 so that it helps my melatonin levels decrease in time for my wake up time, due to the ear plugs and the fact that when I am asleep I am a pretty heavy sleeper, I tend to sleep through him getting up, although apparently I say good bye to him each morning but I am pretty sure I am still asleep as I never remember.
2. Time since last slept
This is the actually is the part where I learnt the most. Whilst I have managed to cut day time sleeping out of my daily routine almost entirely, instead inserting meditations through out the day where needed, as to be honest it makes me feel worse.
But what I wasn’t aware of due to my complete ignorance to most things past GCSE science, was how melatonin (sleep hormone) works and how important it is for sleep.
For a much more scientific answer I would suggest maybe having a quick google, but the dumbed down version really helped explain it to me in a way I understood.Ok so here it goes: Melatonin is the hormone that helps you sleep- imagine your melatonin is stored in a glass.When you wake up and it gets light your melatonin levels fall which is what helps wake us up, at this point your glass is nearly empty.
As the day goes on you slowly build up your melatonin levels to get a full glass at bed time, which in turn makes you sleep, and as you sleep through the night your glass empties again and the cycle continues.
However if you sleep throughout the day for longer than 20-30mins at a time, so that you enter into deep sleep you start to use some of your melatonin, so when it comes to night time your glass is only half full, which means you don’t have the full glass you need to sleep at night.
So if you feel the need to sleep throughout the day it is best to have several short power naps not lasting more than about 20mins over one longer nap where you enter into deep sleep and use up some of your precious melatonin.
Arousal is the third area that we can work on, this can be from absolutely anything from those things we can change like not using electronics especially those that are backlit just before bed, blue like in particular is meant to be hideous for sleep, to those that we can’t irradiate like pain, stress, hunger/feeling too full, light, noise from outside or maybe even inside house mates or even partners snoring.
It is important to try to identify potential arousals that make it difficult for you to sleep that you can eliminate and do that, for example I don’t watch TV, internet or play on my phone (bar setting up meditation) just before bed.
Those items that you can’t eliminate you can help to mitigate there damage for example:
– Light – Light is a key stimulant, and effects our hormone levels, so ensure you have good set of curtains or blinds
– Pain – Have a hot bath with epson salts, take pain killers to try to ease pain
– Stress – See below for stress management
– Hunger/Feeling too full – Ensure you have regular meals
-Noise- Get a good set of ear plugs I use these and they work well 🙂 (Link)
This is very important for those suffering from CFS, however it wasn’t touched on in detail in this session and I agree with the reason why, which was stress and stressors are so individual to each individual person, so it is best to talk these through in one of the one to one sessions everyone has.
However that being said we did touch on some basics.
To begin with the OT helped us identify that: the things that are going on in our lives are a stressor and not the stress itself. Stress itself is internal, thoughts, feelings, physical reactions, each individual responses differently to stress as well as acting differently to different types of stressors.
Stress is in part caused by our body and minds short term response to stressors: The fight or flight response (where the body produces adrenaline)
However with long term problems/ stressors this can cause a problem, as the fight or flight response is an unhelpful reaction to everyday experiences.
In particular we talked about how stress often materializes as we get into bed and try to get to sleep, and I defiantly related to this, where you have had a busyish day you feel exhausted practically falling asleep in front of the telly or talking to those you live with, but when you get into bed you lie there and suddenly your awake, you mind is racing.
This could well be because when you get into bed, this might be first quiet contemplative time you have had all day, the first time your mind has to process things that have gone on during the day or things that are coming up that are worrying you, which then results in fight or flight response kicking in and producing adrenaline which makes you feel awake.
We then had a quick discussion of ways of managing this, and one I liked was before you go to bed, to have a brain dump where you write the things that are worrying you down, almost like a to do list, and if possible do a quick problem solving exercise with them, keep this note pad by your bed so if any pop in your head as you are trying to get to sleep you can write it down, then over time as you build this into your daily routine, both at night having a data purge and in the morning to read over to schedule them into your day, you should start worrying about these things less, thus body stops producing the adrenaline.
Another point that I also relate to is that you are lying in bed restless, you know you have to be at work or an appointment etc and your just lying there and your mind is just thinking go to sleep go to sleep, but your feeling wired and not restful. This can in itself become a habit so if this happens it is best to get up make herbal tea for half an hour then go to bed.
We then ended the session by acknowledging that CFS/ME is actually really stressful in its own right, and so are the consequences of having the condition, as well as other peoples reactions to it. So acceptance is vital, you have to accept that you can’t do everything you used to do.
This in mind you need to try to reduce your own stress, explain to those around you what you are going through and move some of your old duties or tasks onto them, ask for longer deadlines where possible at work. But also it is important to identify the things that you cannot change, and other people and their views are one of them.
My Final Thoughts!
- Give yourself permission to rest – accepting limitations. Prescription of rest!
- By letting your getting up time changes significantly from day to to, this can create a jet lag effect on the body, therefore focusing on fixing your morning routine/ getting up time is slightly more important that your night time routine.
- When you wake up in the night, accept I am awake, it is normal for people to wake up, try not to stress about waking up, if you become restless it is best to just get up or sit up accept you are awake for 20mins, get a cup of herbal tea, read a book or do relaxation techniques and then try to get back to sleep.
- Stop fighting the fact that you have CFS/ME, learn to live within your constraints of the illness- this will differ from person to person and is likely to fluctuate for yourself over time.
Further support from NHS North Bristol Trust CFS Clinic
It was also explained that the help offered by the clinic does not stop after the two foundation courses are over, and that now we have completed the foundation course, everyone will get a one to one, this actually for me was only a couple of days after the second seminar, details about this can be found on a separate post (Link), and then if you chose you can be enrolled on 5 advanced group seminars, which looks at things in more detail, in addition to your individual support, and the emphasis is on long term support.