How it feels for me

Hi, I am not sure if I am about to be self indulgent or helpful.

a lot of people seem to come here who want to understand how those they love feel.

i can tell you how it feels for me, that does not mean that this is how those you care about feel.

Ok, here goes; two years of knowing I have ms I am not ok with it. I am not ok with the day to day affects & I am not ok with the fear of how much worse it could get.

what do I ‘show/ share’ ? I am ok, I am light hearted about my challenges, I tell, I just don’t do ‘poor me’.

What frustrates me is that others don’t seem to get that although I give the impression I am ok with it, truth be told I am not.

i struggle with what I tend to feel is their stupidity. Or, their selfish choice to not really hear. So yes I am angry a lot of the time, but would anyone around me realise that ? No.

i don’t know if this is helpful to anyone, I hope it is,

but my last bit, big hugs to one and all, weather you love someone with ms or have it your self.


i totally get what you say.

i have ms and although my “I am ok” attitude was right for me at the beginning, now 10 years on it feels like my husband has no idea how pants my life is now.

i’m too bloody tired to be angry though.

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My MS is a bit of a joke for people at work - I do lots of running and they say , if I run how can I have MS ? - and I will be able to use the disabled toilet without feeling guilty ( that was my boss ! ) - If I went to HR he would be in trouble !

I do try to take it in good heart, perhaps it’s their way of dealing with it - ok I may look fine, but if they can have the tingles and muscle spasms and the dodgy eyes if they want…

Don’t want sympathy - just some understanding

It’s great to hear someone else explain how I feel! Everyone around me is very caring but they just don’t get it!

my Dad will pop by my house sometimes to see me and the kids, I’ll answer the door and he’ll say “you look well”!

ifeel like saying “I feel awful” but I’d rather not make him worry. The other thing I hate is the question “how you feeling today?”

when I feel exactly as I did 6 months ago, people think you have terrible days and normal days when in fact the struggle is the same everyday, I just don’t want to become a person who appears to be windging all the time and just get on with it.

Hi Sarah. I too agree with everything you say. I have ppms so every day is a bit crappy, just some more crappy than others. I sometimes get sick of people asking “how is your leg?”… firstly its getting worse because its progressive and secondly there are other things that affect me…fatigue, the hug, brain fog etc etc. I must be doing a good job of convincing everyone i am fine because they all think a dodgy right leg is my only problem ha ha. Karen

Thank you all so much for describing your feelings around this. I do not have MS, but you’ve helped me so much to hear these things and in turn, love better. thank you