Our approach to MS and caring


8 June 2021

Carers Week is an annual campaign designed to raise awareness of caring, highlighting the challenges faced by unpaid carers and recognising their contributions to families and communities across the UK. We spoke to Adam, who was diagnosed with MS eight years ago, and his wife, Sharon, who shared their MS caring journey as well as some tips for people in a similar position.

Adam

I was diagnosed eight years ago with relapsing remitting MS. I had been feeling unwell for many, many months and I knew myself that something wasn't right. It was really difficult to get up in the morning and I had trouble even standing up. The world was spinning all the time. After many trips to the GP, I eventually went to A&E with my wife and this is where things started to come together. The tests began and around 12 months later, MS was confirmed.

Over the years we have learned to appreciate each other’s strengths and weaknesses and how to put them into play.

We both knew nothing about the illness, and so it was all a bit daunting in the beginning. The first few months we spent time reading everything, trying everything, planning everything and giving ourselves as much information as possible. As time went on we realised we were just stressing ourselves out even more. We stopped and decided our way would be, to take things a day at a time and not get too carried away in what the future may or may not look like. It seemed pointless to waste that energy.

Being diagnosed with MS has most definitely made our relationship stronger and closer. Over the years we have learned to appreciate each other's strengths and weaknesses and how to put them into play. This is so important in an MS/carer situation as how you communicate together can either make you or break you. Talking and listening is everything!

We still do pretty much everything together, albeit we just plan for things better. It really is all about management and communication. My wife is an angel of a woman and I'm lucky to have her walking this journey with me.

Matching each other's pace of life probably has been our biggest challenge. In the early years, as I slowed down, Sharon sped up to somewhat compensate for both of us. This didn't work and would throw us off kilter.

If I could go back to the beginning I would tell myself, "Don't be scared, it's going be ok. You are stronger than you know. There will be many moments when you want to get off this ride but just remember, that's exact what they are, moments." It's such an old cliche but tomorrow really is a new day.

Sharon

From day one, the diagnosis just put life and our relationship into perspective. The little things disappeared and suddenly the true value of what's important took priority. I've seen this as a gift if I'm completely honest. We forget all too often to stop and appreciate the simple things because life gets so busy.

Instead of focusing on the limitations of MS, we think about all of those things (that we can do).

I don't look or think of my husband as any different so it's hard to pin point how the dynamic has changed throughout our journey. Physically yes, he can't do some of the things that he maybe used to but there are so many other things that he can do and that we have found that we can do together. Instead of focusing on the limitations of MS, we think about all of those things.

The change of pace has definitely been my personal challenge. I've always been someone who went at 100 miles so in the beginning I found this frustrating. Over time however, you start to learn the rhythm of the illness and gain balance. If I could go back, I would tell myself not to try and fix everything and get ahead of myself, things will find their own way.

Talk lots and listen equally. Be there for each other but also give yourself what you need.

We both agree that MS was the best and worst gift all at the same time. For every negative, it unlocks a new positive.

For any new couple beginning this journey, communication is everything. Talk lots and listen equally. Be there for each other but also give yourself what you need. Don't think too far ahead, no-one knows what's around the corner so what's the point in worrying? And last but not least, laugh. Some days you just have to find the funny.

Find out more

  • Information for carers - More information on carers assessments, carers allowance and other organisations which can help.