I did mention on the review forms that I had now gone to SPMS.
I’m sorry now that I did.
It’s like we have to keep proving ourselves.
I also find it very difficult explaining how the MS effects me, I think unless you have MS you cant really take on board the reality of it.
I can talk for hours about MS with my sister because she also has it and fully understands even the tiniest of things that if affects, but sometimes when someone who hasn’t got MS ask’s me how I’m feeling or how it effects me I can see almost straight away that my explanation isn’t sinking in or making sense.
It’s like as if they are thinking “well you look ok, you can drive and you even go to work” .
If only they could fully feel the effort it takes to get out of bed in the morning and get dressed, then shuffle 10ft from my front door to the car, the concentration whilst trying to walk “normally” without tripping over, stay standing upright for just a few minutes without wobbling and swaying while talking to someone, the constant feeling in my hands that I’m wearing gloves, the embarrassment of having an “accident” just because you couldn’t get to the toilets quick enough.
Yes I can drive because I’m bloody sitting down, yes I go to work because (thankfully) my company have found a role that allows me to work from a desk sitting down, I can work the hours that I feel I can physically do, I can take breaks as and when I feel I need to, they’ve put a parking space literally outside the office door, they’ve even stopped work on building a new Lab because they think its to far away from my office for me to walk to.
I’ve been so so lucky when it comes to my job, and also that my wife and son are here for me, but no matter how I try to explain how the MS affects me I sometimes feel like I’m being interrogated, especially with these PIP assessments.