Disability History Month - Multiple Sclerosis

To mark Disability History Month, one of our staff members shares their experiences with MS.

If you’re anything like me you will have a very upsetting image of people with Multiple Sclerosis (MS). Bed bound, poor communication, incontinent and many other conditions that none of us would want. Truth is, most of the time you would have no idea that the person you’re talking to actually has MS. 

There are 3 types of MS and I suffer with relapsing remitting. With this type, if you’re going to get it, this is the one you want. 

It means I have unbelievably random symptoms ranging from pain, spasms, burning sensations, pins and needles, fatigue, balance issues, sight problems and anything else you can think of really! They can last from days to months. I also have some symptoms that have been with me for eight years since I was diagnosed. 

My daily thoughts consist of: -Am I going to be ok today? Can I do what I need to? Will I be able to walk? Will I fall over? Will someone ask me if I’m drunk or tell me to take more water with it? Will people be watching me and judging me? Will anyone offer to help me if I’m struggling today?

I can’t do what I want to do today, it’s physically impossible. I hate that I can’t do housework like I used to. I can’t go for a walk, I can’t run. I can’t carry a cup of tea. I can’t go for a mooch around the shops for a long time. I can’t stand up for a long time. 

I can’t chase or run around with my son in a park. I can’t play football with him. Is he ok? Frustrated that mummy can’t do all the things that a healthy able-bodied parent can do? I feel bad for him, guilty, sad. I will try and do more, even if I’m at risk of pushing myself too hard, I need to for him. 

I can’t drink much alcohol now; I already wobble and fall over without it! I can’t dance like I used to,I can’t dance at all now! I don’t like to go to unfamiliar places. I’m always looking for hazards, uneven surfaces that could cause me to fall. I can’t move quickly; my head can’t cope with fast movements. Chairs sticking out in a room cause me problems. People rushing past me - just squeezing past - unbalances me.

The crazy school run is the worst - parents and children in such a rush. I get very hot - MS sufferers do not do well in the heat! People turn the heating up as they’re cold, I don’t want to say anything as I don’t want to be a bother. 

For me to climb stairs, walk from a to b, stand up, cross a road, navigate round a shop takes so much thought and physical effort. I also worry a lot about what my future will be! The unpredictable nature of MS means it could all change so very quickly. I’m physically and emotionally exhausted every day. 

I think I’ve covered enough of my daily thoughts, battles and concerns that you will get the gist. 

I am also so, so grateful that I can do what the things that I can. I’m walking and talking, and most importantly, I’m alive, making amazing memories with the people I love and for that I am thankful. 

Because you wouldn’t know I have MS you would have no idea what’s going on inside me and why would you? We all need to step back from what we take for granted in life and just open our minds to what else is going on around us. Be more aware, thoughtful and kind to others. It costs absolutely nothing to do this. 

Published 14th December 2021