I Can Run a 5k… Then Can’t Lift a Spoon
I’ve found that in my 6 years with living with MS, there is one crucial part of it that “healthy” people just do not understand.
However hard you try to explain it.
However detailed you are about it.
However many times you explain it to them they just do not understand.
I made this a lot worse when I started running this summer.
I had the same comments in different iterations:
“How can you go running one day but not be able to go out with me the next day? You must be ok if you can do that”
“You’ve just been running, you’re well, why can’t you go out tonight?”
It grew so tiresome.
The thing that healthy people just can’t get their head around is the fact that this condition FLUCTUATES.
Some days I can do more than other days. Some days I can run 6 miles. Other days I can’t move.
But why does MS fluctuate so much?
I learnt recently that there are actually different kinds of fatigue that use energy in different ways.
- Emotional fatigue
- Social fatigue
- Physical fatigue
- Mental fatigue
There is also the thing that our body does where it breaks down the myelin around the nerves.
There is a theory among researchers that is because of this breakdown, the body overcompensates the amount of energy required – using twice as much as normal. Creating more fatigue.
This to me makes so much sense. If I have a day that uses more mental energy, my cognition starts to deteriorate throughout the day. If I have a day that takes a lot of physical energy, I get more weakness and tingling.
So, depending on what you do throughout the day or even the quality of sleep you had at night, your energy levels will naturally fluctuate meaning your other symptoms will fluctuate too. Fatigue for me affects every other one of my symptoms. When I’m fatigued, my cognition suffers and I struggle to say words in a logical order, think straight or even remember words for the simplest of things. I also get extra tingly when I’m physically fatigued – which my MS nurse called a ‘power surge’ and even different temperatures throughout the day affects how strong or weak I am. Thing is MS is fluid. It’s constantly changing throughout the day. Something I’m only just learning how to handle after my 6 years being diagnosed.
How can we plan our lives around this ever changing condition?
I highly recommend keeping a fatigue diary. Making a note of how you spend your energy at each point of the day can really help with knowing how you can plan out your week and what you can plan.
I realized that if I use too much energy in one day, is still affects me two or three days after. It took a while for me to realize that this was what was happening, and I would get frustrated with myself for being so fatigued when I had seemingly not done anything the day before. This understanding has enabled me to plan my calendar around my energy significantly better and therefore, has had a positive effect on my mental health as well as being able to manage my other fatigue-led symptoms.
When I was struggling with knowing where my energy was going it was taking a negative knock at my mental health. I felt so annoyed with myself for being so fatigued which in turn started affecting my other symptoms and making them worse.
Breaking the cycle of exclusion: Embracing cultural competence in physical activity research for people with MS
Cultural competence in research involves considering the culture and diversity of a population.
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