I guess this is the ultimate question and if I had the perfect answer, I’d probably be rich and famous, but the below is the closest I can get based on my previous experience of recovery and the process and format I’m about to undertake for the second time at Kings, which is graded activity therapy.
What makes it worse?
Lets start with the negative. There are two main ways that people deteriorate:
The boom/bust cycle
- One of the signatory features of ME is ‘post exercise malaise’ – in simple words the body is intolerant of exercise/physical exertion and pushing beyond your new limits. Doing so causes a ‘crash’ – i.e. severe worsening of symptoms and a reduction in what you’re able to do. The result is an extended period of rest/recovery, until you might be feeling a bit better, then inevitably you try increasing your activity considerably, with the same, if not worse crash. This series of boom/bust is not only physically damaging but psychologically too, you become demoralised and fearful of anything and everything you’re doing.
The vicious cycle of fatigue
- You feel awful, fatigued, muscle pain, headaches etc. So you naturally rest and reduce your activity in an attempt to get better. This can result in deconditioning, loss of fitness and muscle strength, which in turn results in a further reduction of activity – which increases symptoms when you try to be active – which means further reduction of activity = feeling of frustrating – you get the picture!
So, what makes it better?
This is what causes the most debate – you hear all sorts about what might help – diets, medicine, CBT, rest, GET etc. I can only go by what worked for me as a child and has worked for all people I know that have recovered in the past:
- Find a baseline – that is discover a routine you can do every day that doesn’t cause your symptoms to deteriorate, or is manageable without feeling too bad.
- Stick with that routine – be very disciplined with sticking with that exact amount of activity over a period of time (might be a few weeks for example).
- Once that feels comfortable, add in a tiny extra amount of activity – depending on how badly you’re suffering that might mean sitting up in bed for an extra 5 mins each day, walking an extra 10 minutes or working for another half hour.
- Back to number 2 – stick with your new, marginally adapted for a period of time, until it becomes comfortably manageable
- Continue to repeat 2-3!
This approach seeks to address both the boom/bust approach and the vicious cycle of fatigue described above. You stop the direct correlation between how you’re feeling and what you’re doing – taking more control of the illness yourself, rather than letting it control you.
Of course, it’s not quite as straightforward as I’ve painted it – flexibility is required and you’ll end up making mistakes along the way – but over a prolonged period, it should bring success. I’m certainly hoping so!