I first experienced symptoms of multiple sclerosis (MS) about 18 years ago, aged 28. MS is an incurable, progressive condition which affects the central nervous system. As nerves control lots of different body parts, there are many symptoms and everybody’s MS is different. I’d be lying if I said that life is easy, but I can’t really complain. I have been able to raise my teenage son, run a household and have only this year had to use a wheelchair for the first time and I’m still working.
Making reasonable adjustments for an “MSer” is difficult as symptoms fluctuate plus agreeing adjustments is an evolving process as your condition progresses. PCS helped me over the years to secure parking spaces, change my role, hours and offices, plus paid taxis amongst other things. I am blessed that my current management and colleagues are extremely supportive and allow me to work mostly from home.
I still try to attend meetings as much as possible and it is often on those days when the fun really starts! Just the physical effort of getting ready and travelling means that I am often exhausted by the time I arrive. If I am looking at you rather strangely, chances are that my eyesight is blurred. My hearing is also reduced so if I can’t see your lips move, I might be straining very hard to hear you. My cognitive skills have been affected and I often lose my concentration, brain “fog” descends, and I have difficulty finding the right word. My friends and family are used to my “thingamy jigs” and long pauses mid sentence while I “swallow” the wrong word and rummage around my head for the right one. I know that I don’t always contribute in meetings but when you are sat across a table from senior managers and aren’t sure what will come out of your mouth, it’s less stressful to stay quiet.
Common symptoms of MS are bladder and bowel problems. I didn’t realise how bad my bladder was until I travelled to Leeds for a meeting. Disembarking the train, I had an accident. We aren’t talking about “oops moments” that those smiley ladies in the ads have, this was a full-on dam burst! I tried to dry my soaking trousers on the toilet dryers before I gave up. I squelched to a taxi, then a clothes shop, grabbed the first pair of trousers of the shelf in front of bemused shop assistants. I arrived a little late just hoping that the smell from my bag of wet clothes didn’t betray me. I was scared to leave home for a while but thankfully, I now use catheters and have largely regained control of my bladder.
My most debilitating symptom is neurological fatigue which I manage the best I can but hinders me even at home. I might wake near lunch time feeling exhausted, I drag myself to make a large flask of coffee for my office (so that I don’t have to spend energy going down to the kitchen all day). I sit in front of my fan to cool my body temperature so that my eyes can focus on my computer. Oddly, I often simultaneously get socks and water bottles for my feet where pain makes them feel like they are in a bucket of ice. I ignore my aches and do my job until I am too exhausted to carry on (be it after 3,5 or 8 hours). I buy in meals as I can’t cook anymore, so after I microwave tea, I am in bed by 8pm watching TV or sleeping. On particularly bad days, my son brings food upstairs, so I literally go from bed – office – bed.
This article isn’t to moan. I want to work; I enjoy it. I am proud to do a good job and contribute to my team. Disabled and neurodiverse staff have individual challenges but be assured, we may not be “high flyers” but we know how to “stretch”.