My NHS experience with CFS – Part 2 (NHS CFS Foundation Course 1)
As I mentioned in a previous posts (link)I was diagnosed with CFS and was seen by specialist clinic within about 9 months of symptoms first appearing. Which is really fast compared to other peoples experiences, I attribute this to an amazing GP.
So I really wanted to document my experience with the specialist NHS clinic, because before I got seen I had no idea what to expect, and I know so many people struggle to get any treatment for CFS.
I had heard very mixed reviews from different people, which I think might be due to what different people expect to get from the clinic – there is no miracle cure to CFS/ME so don’t expect that.
I went in with an open mind and was very glad. In this post I will talk through what I got out of the first foundation seminar, through both what leader taught us and from comments from other service users, as well as providing you with the handouts that I received on the day.
The seminar started at 10.30 however I got there about 10.00 as I knew parking was a nightmare, although this time I remembered change!
The room was set up for about 15-20 people with various different types of chairs and we had to sign in and were given the following documents (Click to download document):
The woman running the seminar was an occupational therapist (although a different one than I got accessed by) and was assisted by a volunteer who had gone through the whole process. She explained that the seminar would last for an hour and a half, and we would have a 5 min break half way. It was made clear that we could get up and walk around or stretch whenever we wanted.
The seminar was a mix between the OT talking and the participants chipping in by asking or answering questions as they wanted to.
Key things that I really got from the seminar
To be the seminar didn’t really teach me anything completely new, but it confirmed to me what I was doing right/ wrong and ways I could fine tune my strategies. It was also really good to hear other people talk about what symptoms.
One of the first things we did we list out all the symptoms of ME/CFS and they were written on a white board then we thought of all the implications of those symptoms.
One of my favorite things that someone said was that CFS was like -Wearing a lead cloak and that it felt like your mind was going on and having to drag along a heavy unwilling body around. This really clicked with me and put into words how I feel a lot of the time, to me it almost feels as if my bones are made of lead, whilst my joints don’t hurt (Thankfully) it feels like an enormous effort sometime to move my arms, and it hurts my muscles to lift these metaphorically heavy limps.
CFS vs ME
The OT then emphasised that CFS & ME are one of the same, and what you call it is a personal choose, the room generally agreed that they preferred calling it ME as it was taken more seriously by people in their lives. The OT explained that this is common, but that when explaining to people that you have CFS, you should always say that you have Chronic Fatigue Syndrome in full rather than just saying Chronic Fatigue. This is because anyone could have Chronic Fatigue, as that simply involves being tired all the time, it is the Syndrome part of CFS that is important as it is that that shows all the other physical symptoms
Importance is not why we have CFS but recovery!
We then talked about triggers for CFS in general, and that there isn’t any hard and fast rule of why people get CFS whilst others do not. But that it is more important to invest time in getting better, rather than to waste it on figuring out what may or may not have triggered it off
How to help yourself
The OT reiterated what we all knew, in that there is no cure for CFS. However explained that what you do makes a difference, and the proven ways of helping CFS are:
- Activity management
- Sleep management
- Stress management.
1-3 Are covered below
4-5 Are covered in Seminar Two (Link)
The key message here was not over doing it, but also making sure you are doing enough slowly increasing. One thing doesn’t fit all with CFS so if one of the above doesn’t work with you just try one of the others.
Cognitive Behavioural Therapy (CBT)
This looks at the links between: Physical Sensations, emotions and thinking. The OT used a good example of how they all link and how each can effect you:
You wake up feel dreadful (Physical). You think to yourself ARGHHH I am not going to be able to go anything (Think). This means you are likely to be anxious etc about not being able to achieve what you had set out for the day etc (Emotion).
All of the above are linked may change how we act, we could pull over the covers over our head and do nothing all day or the the other extreme and push through thinking I am not going to give into this, which in turn makes us feel worse, or somewhere in middle.
By changing how we think here: Ok lets just get out of bed make a cuppa or have a nice warm shower and re-evaluate we are more likely to be able to listen to our bodies and not go to one of the extremes.
This really looks at the boom bust cycle, where by when we feel good we do everything we can which then inevitably leads to a bust. Bust isn’t a nice place to be!
The idea of activity management isn’t to flat line, as that would be so boring it is just knocking off the extremes, for most of the time, The occasional Hell Yeah is ok but at least you are prepared for the bust and it doesn’t seem so bad (I did a post on Hell Yeahs – Link).
The key to this is to plan, think how am I going to make it easier, what is realistic and how can I manage it.
Be self aware and iron it out to get a balance. In the longer term gradually increase activities.
It was at this point the question was asked how do we know when we are doing too much? There were a number of responses all of which basically were variations of: stop until you drop/ just hit a wall or even not knowing you had done too much until the next day or even two days later.
Often with CFS we push ourselves to finish something, to try to prove to ourselves or others that we aren’t useless and we are getting better (that is the case for me any how) and was pretty common theme, we have a bit of an internal fight within ourselves between our mind going – we can do this come on (unless the brain fog has set in!) and our body going STOP you need to STOP, but like I mentioned earlier it is like your mind is dragging your body around like a caucus, and often it is adrenaline that gets you through.
It was emphasised that this type of behavior doesn’t help you get better. Something that I am pretty sure most people with CFS realise, but is much harder said than done, and is something I really struggle with.
Two suggested ways of activity management
Time – Rationalise for example – I can socialise for an hour but two would be too much. Do things to a set period of time : stop watch approach.
Activity- For example with Ironing I can do 3 shirts or mow 1/3 lawn doing whole lot will make me flat line.
By following an activity management strategy can help give you control!
Graded Exercise Therapy (GET)
GET is a structured programme that aims to gradually increase how long you can carry out an activity, it is mainly used for physical exorcise, but equally applies to other activity in your life, the example below talks about walking, you could easily substitute it with none physical, so reading or socialising etc pretty much anything.
You can also use activities rather than time as well, it makes sense to link this closely with what you use for activity management. The OT explained that you should try to work out the following, not for every single activity you do, but the ones that you find very demanding.
First of all you need to work out what you can do at the moment -this is what you will call your baseline (a term I had heard a lot but never really understood). The way you work this out is out is to do 3 days you experiment .
Day One- Walk for 15mins
Day Two- Feel really good so step it up and walk 25mins
Day Three- Feel awful, so don’t walk at all – 0mins
So to create your baseline you work out the average number of minutes walked over the three days and then half it to create your baseline.
Average – 15+25+0 / 3 = 40/3= 13min
Baseline – 13/2 = 6.5min
If you feel that the baseline is way too low then you can make your baseline anything in-between the calculated baseline and the average you worked out.
Then you want to do your baseline, if you do this successfully for a period of time, slowly start increasing it by 10-15% do that for a while if fine increase again by no more than 10-15%.
Monitoring your activity
As a final note we were told the emphasis on monitoring what we are doing. As this helps to show if you are you a secrete over doer, where by you think you haven’t done anything that day but it turns out you have, had a shower, written a blog post, popped to the local shop to pick up some food and made dinner as well as chatting on the phone to a friend for a while, which is hardly doing nothing.
We were given activity monitoring sheet, which we needed to fill in to help show a pattern in our behaviour. By doing this it helps you identify what your doing right and wrong- it is important to do it as your going so you know what you have done rather than trying to remember.
There are 5 categories you needed to mark your time to:
High– Any activities that really takes it out of you- for me this is pretty much anything social that involves leaving the house, driving, going to work, shopping.
Low- What you can do for long period of time without it effecting you – for me this is watching TV, writing up small blog posts, surfing the internet, reading
Medium- Anything in between
Rest- Is relaxing with no stimuli – For me the only things I categories under rest is meditation or having a bath (where I am not reading).
When tracking your activity it is important to count everything you do from pottering around to working. Do this based on how you are now not when you were healthy. Think about now!
You need to treat yourself as a patient, and accept that it is ok not to be able to do things, it is important to say NO more, as well as asking others to help you. This is something I am not very good at and defiantly haven’t got out of the boom bust cycle yet, it is really hard to reassess how you do everything.
One of my favorite comments, which I think came from the volunteer was – Be patient!! Recovering from CFS is like trying to turn an oil tanker, keep at it and eventually start to see results. Turn the spot light on yourself think what can I do and what do I need to ease yourself back into life.
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 once you have completed the foundation course, you will get another one to one, and then you are likely to 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.