Hi there,
I was diagnosed when I was 31, 20 years ago. Much of the next 10 years you couldn’t tell that I had MS, and fatigue was about the only thing that caused problems which I managed by needing timeout in the first aid room for a 20 minute power nap when I was struggling. I told work immediately, and they probably forgot about it as much as I did.
In 2014 I had my first real problem with mobility, after being to the beach one summers day and finding that I couldn’t walk to get back to the car which happens to be up a cliff. By that point I hadn’t seen the MS team for a good five years, and wasn’t on any DMTs, actually getting back in touch with them to say help was virtually impossible. In the end I had to go private to see the consultant that I was previously under. He did his consultation and put me straight back on the books at the hospital, and I started taking Copaxone. Once I got into the air-conditioned car my legs were back to normal, so it was the heat that got me going. Work was still going okay, or so I thought. Looking back now I can see that I was really struggling with cognitive ability. I was a change manager delivering a multitude of changes across organisation, people, infrastructure, Systems,and there were times when I would be struggling to understand what I was supposed to be doing, or what people were talking about, or why I couldn’t manage my team of analysts. I put it all down to stress. In the end I took a sideways job change into IT project management which is what my background was, and I was back on top of my game. By 2017 I was starting to struggle with mobility a lot more, and was using two walking sticks to get around. I had a couple of bladder incidents in the office too. I was also having more problems with cognition, so multitasking was something I was no longer able to do, decision-making was something I would struggle with, and memory problems were really starting to cause an issue. I went in to give a stakeholder update once, which I had done hundreds of times, and it was only about a day later that I realised I’d given the previous week’s information again. I also had a new line manager by now, and she was an absolute ****, so I took the decision to ask for ill health retirement. Within a week I was on gardening leave.
Within six months I was needing a manual wheelchair to do more than a couple of hundred yards, and within three years I was in an electric wheelchair full-time. I had thought retirement would be great, with opportunities to travel, do hobbies, enjoy gardening and so on. The reality is that I can’t do any of it. I wish I had retired four or five years sooner, so that I could actually have done some of those things. I’m now 51, stuck in a wheelchair, and stuck at home 90% of the time. I think I’ve been outside of the house Half a dozen times this year for things other than medical appointments. I’ve lived in Cardiff for 30 years and my family are all up in North Wales, seeing them is not easy anymore. My dad is 90 next month and I don’t think I’ll be able to get up there to see him.
My advice would be to retire as soon as you are able to. You’ll have the opportunity to do more things for yourself, rather than for your employer. All of that depends of course on whether you could afford to. I was devastated to have to retire, because I loved my job and I mostly loved the people I worked with. But I wish I’d gone earlier so I could’ve loved my retirement, and loved the things I was doing.
It’s not an easy decision to make though. One thing that stayed in my mind is when the union rep said to me that if I died tomorrow the advert for my job would be in the papers before my obituary.
Good luck with everything.