Redefining what exercise/movement with ME/CFS (NHS TiP Course pt3)

In my previous post : Benefits of Movement for CFS/ME (link), I talked about some of the positive effects that can come out of using movement/exercise to help elevate some of the symptoms of CFS/ME as well as increasing daily functionality.

But equally several of the group had done GET (Graded exercise therapy) in the past with very negative results, whilst most had had some sort of negative experience of over doing it on the exercise front, leading to a sever crash.

So if on the one hand we are being told that exercise is good for us but on the other from both personal experience and from things we have researched and read up on we know it can have some pretty dire consequences, it seems like we are stuck in between a rock and a hard place.

If you asked Joe Blogs walking down the street or even your old pre illness self, what exercise was; I am pretty sure you would get a list of things such as:

  • Going to the gym
  • Playing team sports
  • Swimming
  • Running
  • Walking

All with that aim of pushing it to the max every time, trying to beat the other team or even your own personal best.

Well these are just not appropriate for CFS/ME patients, well at least not as a starting point.

So we know that going to the gym, running and even walking can be incredibly dangerous for us, so what is appropriate?

What can we classify as exercise, well it will be really individual depending on your symptoms and where you are right now.

What is appropriate for one is not appropriate for another.

For instance, I know that I can walk for 10 minutes without feeling any ill effects, however that would be completely out for reach for another sufferer.

So what classifies as movement?

  • Sitting- If you are bed bound movement/ exercise for you could be sitting up in bed for 2 minutes a day.
  • Getting out of bed– to go to the bathroom for example can be classified as exercise
  • Stretches– stretches are really important and was something we really worked on in the group. In the first session we were given a variety of stretches that could be done from a seating position (even in bed). I go through each of them in detail with diagrams in a separate post (Link- Coming soon)
  • Standing – Standing up, still with relaxed arms, is a good form of movement, this alone helps with circulation, balance and strengths your legs
  • Walking–  If you are well enough going for a short walk.

This very much feeds into what I am learning on Toby Morrision’s (Link) online program as well, where he talks about how exercise can be bad for those with CFS/ME if the wrong type or quantity is done, but having no movement at all in routine is likely to cause further reconditioning of our bodies and lactic acid build up which causes more pain.

Most importantly, do not compare what you can do (/can’t do) with others be that: non suffers ,other suffers or your old self.

Getting Started: Judge where you are now!

I think from a combination of sources, from this course (& the NHS Foundation Course –Link), Toby Morrision’s online program and from reading loads of peoples person success & nightmare stories online; this is the step you need to think about the most.

I think the best way to look at this is over the course of a week, what can and can’t you do? How ever big or small!

Whether that be being able to walk for a short amount of time or if you are bed bound sitting up or getting up to go to the bathroom.

Basically what ever you want to do: Start SMALL!!!!

less-is-more

Walking

Starting out, I evaluated what I had done the week before, I hadn’t really left the house much but I had walked to the shop round the corner and back, which was probably in total a 15 minute trip, so I knew I could walk for 10 minutes at a go.

Ok but I knew it wasn’t sustainable to do every day, so from advice from NHS and Toby Morrison, a good starting point is to divide what you think you can do buy half, so my plan was to walk for 5 minutes a day, this mainly done around the house to be truthfully honest with you.

Stretches

In a separate post (Link- coming soon) , I go through various sets of stretches that were given to us by the physio at the clinic, these basically can be split down into 3 sets of 4 different stretches (12 different stretches in total). 7 of the 12 can be done sitting down (/sitting up in bed).

We were given the first 6 stretches in week one, with the aim to do one set of the 6 stretches once a day, at a time that suited us.

Other movements

So depending on the severity of symptoms the above might see completely out of reach, where the word movement/ exercise seems like an alien concept. I was only bed bound for a couple of months, and in that time the movement I worked on was sitting up in bed for a bit, then slowly trying to get out of bed, to the bathroom and eventually to the sofa un-aided.

Think movement not exercise – anything that moves your body is movement

Progressing & Moving forward

OK, So you have got moving a bit more be that, stretching, going for a short walk or sitting up in bed more than you did before. So now what?

Well you want to increase (well I defiantly did), but you may be nervous to do so, to undo the good work you have done so far, fear of a relapse, or you might be tempted to go too fast too quick.

One of my favourite Toby Morrison quotes is:
Consistancy over Intensity

How much to increase?

From both NHS and Toby, the best consensus is to increase in between 5-15% at a time, which is a pretty much the rule for increasing any type of activity, for example with work/ school (Link).

This means:

If you are on: What Not to do! Sensible Amount to Increase to:
1 Set of 10 Stretches p/d Doing 2 lots of 10 Stretches p/d 1 Full set and then one or two individual stretches
5 Minute Walk p/d 10 Minute Walk p/d 6 Minute Walk p/d
Sitting up in bed for 10 minutes p/d Sitting up twice a day for 10 mins Sitting up for 11 minutes or maybe two lots of 6 minutes in a day.
When to increase?

The second tricky thing is to know when to increase again this will be individual, from what I have read about some suffers experience of GET is that there are very ridged programs in place of how much and when to increase, that don’t listen to their bodies or are completely not tailored to them.

Instead of having increase days, instead have a review date. I do this in a lot of areas of my life: movement, work & social.

I tend to review movement every week, I evaluate any side effects I have had from doing what I set out that week.

  • If after the first day or two I haven’t had any ill effects I increase
  • If I have really sever effects I decrease.
  • If I have mild effect or have more going on that week I stay on the same level.

Listen to your body! Do not compare yourself to others!

 

Managing set backs& Distractions

One of the best way to manage set backs for me at least, is to have the review dates rather than increase dates (prevention is the best course of action), but if you have over done it which will inevitably happen at some point, so what to do?:

  • Well never push through it
  • Don’t beat yourself up
  • Try not to go back to square one
  • Do dial it back a notch though, as what you have done was too much for you right now
  • Look at other things in your life that may have contributed, as life can include movement and if you say walk to the shop and do your 5 minute walk this would effectively be doubling up your movement or even more.

I think with this illness it is often a case of taking two steps forward and one step back, and it can be really hard not to feel like you have gone back to square one or even worse.

Don’t get me wrong in a lot of case people do end up in a much worse state, I understand this that’s why I think self evaluation and listening to your own body is the most important thing, if something in you is screaming this sounds way too much! Well in my experience it probably is.

We were then asked what prevents us from sticking to doing our stretches, walks etc we had a lot of common distractions: Firstly that it is so easy to not priorities them over other things going on in your life, set backing, colds/flu, and forgetfulness.

We then brainstormed how to overcome each of them:

  • For letting life get in the way -it was about building the activity into your daily routine, so doing stretches whilst your cleaning teeth or when you watching TV in the evening, one lady even put a couple of the stretches (sitting ones) visible in her car, so she could do them just before she went into work.
  • Forgetfulness– Well the above helps, but also I find having the print outs stuck up in visible places around your house, where you are most likely to do them.

For me this is under my TV and I try to do one set when I’m drinking my breakfast smoothie (Link) and one in the evening after dinner.

  • With the set backs and colds, maybe it is better it’s better to dial it back a bit anyway.

Useful links:

For all other CFS/ME Tips and info check out my index.

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