In previous posts I have talked about my positive experience with the NHS and having CFS/ME from my:
- Speedy diagnosis from my GP and referral to Bristol specialist clinic (Link)
- NHS Foundation course where we got information on: CBT, GET, Activity Management (Link), Rest, Relaxation (Link), Sleep and Stress Management (Link)
- To my second 1-2-1 where I asked for further information on: Phased return to work (Link) and movement/fitness (Link)
It was in my second 1-2-1 that I was offered to attend the clinics advanced course names from Theory to Practice which was held over 5 sessions, and it is the first of these that I am going to discuss now.
The course comprises of 5 sessions held in post part two weeks apart, from 1.30-3.30 on a Wednesday afternoon with a break half way through at Cossham Hospital (Link).
Cossham although it is out of the way (for me at least) is a much better venue for the session where we have a nice big airy room which accommodated the 10-12 participants sat in a circle easily and has good refreshments available, unlike the Southmead venue in which the foundation course is held where up to 20 people are all squeezed in.
Cossham also benefits from free parking on site but also from the road outside it which is just as close as the car park itself.
This course is lead by an OT and a Physio; and is much more intimate and involved more participation than the foundation course, where the group really work together sharing support and ideas of what has helped us but also how to put what the course leaders are saying into practice.
A few ground rules were put in place to make group working most effective, for instance accepting that others may have difference of opinions to yourself and to ensure that confidentiality of those in the group is maintained.
In addition we were given a comprehensive workbook which would span the whole course: NHS CFS/ME: From Theory to Practice Workbook
Recap of Foundation course
We began by brainstorming the things we know that can help us try to manage our symptoms and in time improve:
Pacing and finding baseline is key, ensuring the right level of rest and activity for you!
Planning your activity and rest and knowing when to stop, recognising the different types of activity from physical, mental to social.
Setting baseline can be hard and often involves a lot of trial and error, if you are being too ambitious ease off but also recognise the little improvements.
It can be really useful yo have a system to record what your doing to help you monitor and adjust your activity and rest levels, I mentioned here about how I use a credit based system which is a bit like weight watcher points systems type of thing (Link)
As mentioned in quite a lot of detail in the foundation course and my previous posts, resting is key for those suffering from CFS/ME.
It is something I am still not particularly good at, as I often rest in response to by body by that point I have often passed my threshold.
Planning in rest when you know you are going to be busy rather than just responding to your body when you feel a crash coming on is very helpful thing to do.
A useful thing that was said to me before was that you can view rest like punctuation, there are so many types:
|Comma||Do a 30sec mindfulness exercise at desk, put feel firmly on the floor and take 5-10 deep breaths|
|Full Stop||Get up from desk to get a drink|
|Semi Colon||5-10 Minute guided meditation using Buddify or MP3 (Link), in a quite private space.|
|New Paragraph||Lunch Break|
|New Chapter||Lie down/ 20 min power nap|
Movement is really important for those suffering from CFS/ME and is something that was talked in depth about later on in the first session (Link – Coming soon)
I have said time and time again how mind set is crucial for those seeking wellness, don’t get me wrong mindset alone isn’t going to help me get better but it does help me put into play the other areas of self management that are key to my wellness, and this was gain confirmed here.
We all agreed that acknowledging the little achievements in our live however small is so helpful.
Sleep is key, the quantity but also the quality. Having a sleep routine is really important going to bed at the same time and waking up at the same time is really helpful, as well as reducing the amount of day time sleeping which in turn will make the quality of your night time sleep better.
On a personal note since the foundation course where I learnt more about the science behind sleep etc I have been waking up at the same time each morning most days unless there is a specific reason.
I started setting my alarm for 9.20am as this was I time that was good for those days I work and do not, I found it really tough to begin with, but I forced myself to not go back to sleep and now about 3-4 months on unless, I am feeling under the weather (full of cold etc) or had a particularly late night or busy few days, I wake up naturally at around 9 – 9.15.
I have managed to cut out day time sleeping almost all together, unless I am feeling poorly or have way over done it, and even then when I have day time slept for more than 20-30 mins I always regret it as it makes it a lot more difficult to sleep at night.
Stress and anxiety can exacerbate our symptoms, so management of the stressors in our life are key.
Need to evaluate the activities in your life and balance what you need to do with what you want to do and try to have a mix of the the two.
Having the support from others is so useful, whether that is from partners, children, family, friends or co-workers.
But it is often hard for those around us to know what it is we need from them, to understand why it is we need the things we ask for or what it is we are going through.
Communication is key, clearly explaining what it is you are going through and what it is you need from them is vital to getting the support you need.
Communicating to both yourself and to others will be covered later in the course (Link- Coming Soon)
Acceptance of where you are at and the condition you have is often held as the first step of recovery for almost all illnesses.
CFS/ME is no different, acceptance is hard and isn’t something that just happens one time, although there may be a light bulb moment/ turning point for you.
Acceptance is a continually process, that you need to to on both good and bad days. On a good day you need to reel back accept where you are and try not to over do it (something I am not good at ) and on a bad day listen to your body and accept that not all days are going to be like this (Link)
The result of the above?
Well is we do all of the above and we meet our little progressive goals we will begin to move on slowly.
Something that Toby Morrision (Link) said that I thought tied in nicely here was not to strive for recovery itself but for more functionality and by putting into practice the above I have started to see improvement in myself.
Recovery is not going to come quickly and may not come to you at all but finding your current baseline level achievement in itself and then building up activity levels slowly you can hope to see increased levels in functionality.
What gets in our way?
The thoughts about doing all the above activities amongst the room was pretty unanimous. Basically it is really difficult to do, especially balancing all of them at the same time. Life and circumstances just seem to get in the way.
So what exactly for us was getting in the way?
- We seemed to find it easier to do when working with our own time schedules, but going back to work and having to work with other peoples time scales makes it even harder.
- Illness or infection- basically puts a stop to everything.
- Recovering from setbacks
- Having to manage symptoms and cutting out social life
- Looking ok on the outside, making peoples expectations of what you can/ can’t do very different to reality.
- Don’t want to say no to things, not wanting to let yourself be defined by the CFS/ME or it to control you
- Push forward for children, as you can’t call in sick from kids, sometimes kids keep you going.
Basically it boils down to : There is always something that can get in the way
Benefits of applying self management techniques above:
- Start to feel better!
- Begin to be able to plan activity around various events
- Gain an acceptance of fall out, accept that sometimes they will happen & hopefully activity diary can help predict when this is likely.
- Controlling fall outs more makes easier and less stressful, as you can accept consequences (fall out) if you have over done it doing something you enjoyed.
- People around you can see you trying to make yourself better, this can help improves communication as you can focus on what you’re doing to get better.
- Gradually you should get better over time, with the aim that you won’t get huge crashes and having increased daily functionality.
It is important to remember your not going to one day wake up and feel better.
To give the course justice I am breaking it down into various parts, so not only is it easier to read but also for me to write 🙂
Part 1- Recap and Pro’s of Self Management
Part 2- Movement (Link- Coming Soon)
Part 3- SMART Goals (Link- Coming Soon)
Parts 4+ (Links- Coming Soon)