When MS gets a little bit harder …


I haven’t been officially diagnosed with SPMS, but I presume this is what I have as I haven’t had a relapse for years. I used to lurch from one devastating relapse to another and would never know when it would next strike me down.

Instead, my MS now behaves like a silent assassin, slowly and gradually eroding my ability and independence.

Lately, for example, I’ve been unable to get up and walk the short distance from my bed to my en-suite bathroom. I have to fumble about in the dark, trying to get on my scooter to get there which is noisy and time consuming.

Work is getting more and more difficult too as I’ve lost confidence in transferring from my scooter to my office chair and back. I now have to rely on colleagues to hold the scooter steady while I summon up the necessary “oomph” to manage it. They insist they don’t mind but I feel like a burden and imagine all sort of conspiracies when I’m not around.

This may all be down to an infection or generally feeling unwell, as I’ve been known to improve before when things have got more difficult. I still have “strong” days where everything feels possible and I’m able to easily get around, but at what point must I admit defeat and adapt to a “new normal”?

One of my colleagues suggested a wheelchair, for example, instead of my scooter. With a wheelchair I wouldn’t need to transfer all the time, except when going to the toilet, and it would save me so much anxiety and stress.

I agree, but my whole life revolves around using a scooter. Would I need a bigger car? Would I need doors widening at home and at work? How would I afford to fork out for yet another mobility aid, especially as my employer recently contributed towards a new scooter?

What if I improve and find I don’t need a wheelchair and can manage just fine as I am?

All this keeps me awake at night and is getting me down lately. I’d love to have a day off having MS and everything feeling so hard all the time!

I’m usually a strong and resilient person but lately it all feels beyond me.

That is all.


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