Having a bit of a PEM day today and was just reflecting on how I think PEM is probably one of the main reasons that CFS is so misunderstood.
PEM stands for ‘Post-Exertional Malaise’ meaning symptoms and illness that you get AFTER doing stuff. ‘Malaise’ seems a bit of a ridiculous word to be honest, which conjures up images of neurotic Victorian women swooning on couches....just me then?! But for better or worse, PEM is used to describe the ‘crash’ in energy that can happen a day or two after doing more activity than usual along with the joyful symptoms that entails (migraines, swollen glands, dizziness etc etc).
I think the reason it’s such a tricky one is that people can look at us and think ‘but you were totally fine doing that walk on Monday; why would you be ill on Wednesday if it was the walk?!’
I think this is where the ‘all in your head’ ideas come from - as people outside think something along the lines of “well if she is fine on the walk and ill two days later, it must be the sitting around at home that is bad for her.”
And hence the spirals begin - people push you to do more as you seem fine whilst doing things. And you feel anxious and resist, because you know you will suffer for it later. So then people begin to think that you are just a really anxious person and that that is the reason you can’t run round going to work, seeing friends and exercising. This leads to a lot of conflict and misunderstanding between those with the illness and the people around them I think!
There is some technical reason why our CFS bodies can only produce energy at a certain rate that is lower than non-CFSers (mitochondria). The irony is, if we keep within that rate and don’t expend energy at a faster rate than we make it, we can gradually build strength and be able little by little to be able to produce energy at a slightly higher rate.
However, if we give in to others’ well-meaning urges to do more, we continue to stress our body by using up all the energy available to us, spend several days (or weeks or months) crashed out and then having to start all over again.
I’m just beginning to learn that my assertiveness is something I must develop in order to win the long game with this illness. I hate conflict with others and feeling that others are disappointed in what I can do, or that they think I’m not ‘trying hard enough’ by pushing myself to do more. Not to mention that I also want to do more than I can currently. But I’ve been through enough cycles of relapses now to finally realise that I’ve got to put some firm boundaries up with other people or I could get stuck in these cycles forever. And I am not having that!
Wishing you all lots of health and happiness.
A Rose through Concrete (I will get there!!) xx
Ps - shout out and lots of love to the supportive non-CFSers who listen and don’t go down the ‘just push yourself’ path - you are literally saviours, thankyou xx
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