After I had attended the foundation seminars held at Southmead which covered a variety of issues including: Activity Management, CBT & GET (Link), Rest & Relaxation (Link), Sleep and Stress Management (Link); I then attended a follow up with my CFS specialist, this was very much a session lead by me where I could ask for help and guidance with the issues I was really struggling with.
Before this session I had a good think about what it was I needed the most help with from her. The two areas I found I wanted her advise on the most were: Returning to work/ Phased return (Link) and the best way to increase my physical fitness/ exercise.
I have never been a lover of exercise or keeping fit and have since my late teens be over weight which isn’t something that has bothered me to be honest, I go through waves of trying to get fit and before I began to suffer with ME/CFS I tried to go to a spin class once or twice a week.
Spin was really the only exercise that I did, classes worked the best for me as the pain of doing the class was always less than the embarrassment/ shame of having to duck out of the class early and due to being so uncoordinated with no sense of balance most classes were rules out, so Spin was it.
Long gone are the days of going to spin, but equally I want to try to be as fit as I can without causing any set backs, more to be healthy than to loose weight, although that too couldn’t help.
Increasing my physical activity levels have been something that has made me really apprehensive as I am pretty scared of relapsing, and advice online is so specific to the individual I just had no idea what would be a good starting point, how to increase etc.
Types of exercise
We started by discussing which type of physical activities would be best to start with and she clearly stated that I needed to be realistic.
NHS CFS Exercise Info Sheet
Firstly I needed to start doing was to increase my strength, to do this she gave me a program of stretches to do. To begin with these included: Neck, Shoulder & Trunk ones as all of these could be done sitting down and once I felt comfortable with those I could start with leg ones .
We went though each of them and practiced them in the session. In addition she gave me a print out of each of the different types of stretches so I would remember them.
My plan is to do a full set in the morning as part of my morning routine (Link) and then in the evening when I’m watching TV and to do a few shoulder and neck ones throughout the day. Once I feel my strength begin to increase and I feel no ill effects of doing them I plan to do them with resistance, to do this I will use a physio band which can be brought for a couple of pounds on ebay.
Secondly to get into a routine of walking. There are several steps to this so we took it step by step.
Step 1- Baseline
One of the word ME/CFS sufferers will we well conversed with is baseline. It is a word that is thrown around so often, but what does this actually mean in this case specifically?
Well to work out an estimate of what my current baseline she asked me what I thought I would be able to work without it having any consequences, I had a think about this and came up with 15 minutes of slow walking.
She then recommended that I start trying to walk 10 minutes in addition to my daily activity, unless I have a super high activity day scheduled.
The aim is to do the 10 minutes consistently (or what ever your scheduled baseline is it could be as little as 2) and to focus on doing that time rather than the speed or distance.
However if doing the 10 minutes per day starts to have negative impact then a review of baseline must be done and level decreased.
Step 2- Increase
The next step is knowing when to step it up, and this is where the real commonality with my phased return to work (Link).
Once baseline has been achieved consistently for 2-3 weeks look to increase 10-15% and repeat this process until the walk time is 30minutes, after this time increases can involve increasing the pace/distance of the walk again by 10-15%.
At any point if you start to feel negative effects drop back.
Further support from NHS North Bristol Trust CFS Clinic
The support from the clinic then can take two forms (which aren’t mutually exclusive)
- 1-2-1 Support whilst this was the last formally scheduled session, it was made clear to me that if I needed any support I was able to email any time and if necessary I was able to schedule phone or face to face sessions, as and when needed.
- Able to attend a set of advanced seminars: 5 2 hour long sessions held on a Wednesday at Cosham Hospital, these help put theory into practice. These sessions have a maximum of 12 participants and 2 facilitators: comprising of an OT and a physio. In these session participants have the opportunity to put together specific and individual action plans and programs. I am scheduled to start later this year so will post more then.