invisible symptoms,

Everyday living
1

Hello everyone.

The thing i find the hardest and the loneliest about having Ms isnt the mobility, bladder, spasms, etc etc, its the feeling so ill bit. Because that is invisible yet that is the thing that really affects me; the vision, balance, double and blurred vision, fatigue blah blah blah. when i ever try to discuss my vision with anyone they just think im mad, Its really hard to tell people that although your vision may be theoretically perfect when checked, you actually cant read properly, or take in what you have read, or concentrate on anything.

and i dont even know why i feel the need for others to understand, and i dont understand why Im so surprised its. getting worse.

my very closest friend and colleague. non drinking, non smoking health vegetarian has had a small stroke . Im so glad to help with her young daughter and elderly mum , buts its taken it out of me today and Im feeling right sorry for myself. fed up of being told I look well when I actually feel the worse ive ever felt! just told work Im going to take early medical retirement and am worried I wont get the higher level, worried about PIP. even though i havent even heard when my assessment is. At the moment i get DLA high rate for mobility and middle rate for care . I rely so much on it.

Am worried about coping on half pay waiting for my retirement to be confirmed,(should take about 4 months)

\dont normally whinge, but thought it you cant have a moan on here there is no hope!

thanks for listening

carolyn

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MS is a hotchpotch of everything and people only understand what they see. It is common to feel a fraud if you cannot display your symptoms for all to see. I do too, many people do.

As for your pending assessment, assuming you have one, I have been given good advice. That is to nt be able to do the activities asked because of being in constant pain. No, you cannot pick that up and move it, your fingers are numb and you are in pain. No you cannot press that button, your hand is too numb, no you cannot walk, you are too fatigued and weak to stand, it is too painful.

That is what I was advised and that goes with my situation, you need to form the same mindset and NOT be able to do the tasks asked of you…but don’t be ridiculous about it.

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