Dear readers,
I have covered the invisible side to MS many times and to be honest it’s an ongoing problem.
Here’s why it’s a problem - generally we are not believed because we look so good and there’s nothing to see on the outside so we must be fine . Well no , just because we look fine doesn’t mean we are fine .
It’s almost like we get investigated on a daily basis and we need to prove our innocence. Now I have given up explaining or I give very short answers because I can’t be bothered to explain anymore .
The problem is getting the same questions over and over again and having to repeat myself . So my answers have become short statements “ it doesn’t work for me “.
I would get the “ let’s meet for breakfast “ or “ why are you not cooking “or “ spur of the moment invitations “. They really don’t work for me .
Everyone is different with MS and my struggles are early breakfast out , mainly because my sleep gets disrupted and I take a little while warming up like an engine I suppose . It’s not getting out of bed early that’s the issue but just getting my body to fully function.
And for cooking that’s a whole different thing again , the MS fatigue and the numbness in my legs and arms and heat all add to the mix of not always able to cook . It’s not that I don’t want to cook or I am lazy , it’s just that I am not able to some days .
Then we have the last minute invites which sometimes work but other times it’s a real struggle and especially if they are in the morning or evening. Depending on what I did the day before or on the actual day , I might not have the energy to go out unexpectedly. Don’t get me wrong I would love to , but my body has limits .
These are only a small part of the problems that people with MS struggle with and these experiences are totally mine .
Often we get seen as being lazy or not trying enough but having had MS for roughly 30 years I know what works best for me now .
Yes we do loose friends because of this and it’s really sad that there is not enough understanding. Although there are more movies about MS and one of them is called “ Take my hand “which I recommend. ( director John Raftopoulos )
And most people with MS would know the term “ but you look good “ it’s a compliment but at the same time very frustrating.
What people don’t realise it takes a lot to maintain symptoms and live as healthy as possible . These are not a luxury but a must . I have to keep my body moving and doing strength training at the gym regardless how bad I feel . I need to eat healthy to keep the right weight and reduce my symptoms. I know the health part is important to most people but this is a must for me to keep my MS stable .
It’s not a luxury and it’s damn hard hitting the gym with MS fatigue or numb legs and arms for example , but it’s necessary for me .
I hope my readers can relate to this one and please watch that movie and enjoy your popcorn 🍿
Best, Mascha
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