I’ve just completed a 10 week course on fatigue management, run by my MS nurse and the neuro-rahab team in Brighton. The course was run specifically for Msers, 13 of us in total, and included different speakers every week.
As there is such great information online these days I didn’t learn a massive amount that I didn’t know already about fatigue but I did enjoy the course and it was lovely to meet real people suffering from the same problems as me. It was also eye opening to hear about symptoms I don’t suffer from and it reinforced the reality that no two people experience MS in the same way.
So, what did I learn then?
Fatigue is, “The sense of physical tiredness and lack of energy greater than expected for the degree of effort required for a usual task” or “ a subjective lack of physical/mental energy that is perceived by the individual to interfere with usual or desired activities”
Anyone who lives with MS will recognise fatigue without needing a definition but I had never made the link between physical and mental fatigue before. I always thought fatigue was triggered by overdoing things physically and that resting would help. This is true but overdoing things mentally can also make me feel exhausted.
We were encouraged to keep a diary for 2 weeks, recording how we felt at different times of the day. This heightened my awareness of fatigue and it was amazing what I realised. It was my daughters birthday a few weeks ago, for example. We had a party at home for her with a bouncy castle in the garden and a million kids running about. I spent the entire afternoon sat at the kitchen table, hardly taxing physically but the following day I was exhausted! I now realise that this was because I’d spent the afternoon talking to everyone and this had worn me out.
I also learned better ways of resting and recovering from fatigue. As I used to think it was all physical I thought resting meant laying on the sofa with my feet up while watching TV and playing with my phone. This doesn’t address the mental side of things and I was actually overloading my brain, potentially making fatigue worse. Yesterday I had a night out planned with a few of the people I met on the course so thought I’d practice my new skills. I lay down with the TV off and put my phone down. The next thing I knew it was 4 O’clock! I’d slept for an hour and a half and felt great for my night out!
Obvious things were also reinforced on the course. Diet and exercise, for example are important to improve fatigue. Eat a healthy, balanced diet with fresh fruit and vegetables and make sure you exercise as much as you can. This is not easy with 2 sticks but it motivated me to buy my “Vfit Gravity Strider” which I’ll talk about in another post.
Another thing I’m better at since the course is pacing myself. I always used to cram as much into a “good” day as possible as you never know when another one will come along! By pacing myself though I can have 2 good days in a row. I cancelled my oxygen treatment and yoga yesterday, for example, to make sure I wasn’t exhausted for my night out.
I think accepting this about my condition actually helps me feel calmer, less stressed out and ultimately happier!.
On week 5 there was a friends and family day where partners or family went instead of us. It was a shame that this was so poorly attended, The Husband refused to go but my Mum stepped in like a hero and went instead! There were only 3 other people there but my Mum got loads of information and was pleased she’d gone.
The best thing for me about the course was meeting other Msers. I went out with 2 from the course last night and met another MSer as a result which was great.
What tips and strategies do other people have to deal with fatigue? I’d love to hear what other people do………………………