Life before my diagnosis was normal, says Mat Sparrow, a member of the Chilterns MS Centre who has lived with the chronic neurological condition that is multiple sclerosis for over 15 years.
I worked for myself with my own electrical business, enjoyed normal family life – going on camping holidays, bike rides and walking the dogs. I was heavily involved with cars and had a show car that we attended various meetings with. Just normal!
I’d had days of extreme tiredness when I was in my early teens and then two years prior to my diagnosis I experienced an episode of optic neuritis*. My diagnosis eventually came in 2006 – I was only in my 30s!** I developed a numbness in my feet that gradually spread up my body leaving me with severe mobility issues.
Life after was vastly different and I made the decision to close my business. We also had to move from a house to a bungalow. Everyday tasks took much longer and my days needed a lot more planning. At the time there was a realisation that I could no longer do as much as I once could. I was in pain, fatigued and becoming very forgetful. I know it’s irrational but I was starting to feel like I was becoming a burden.
Before coming to the Centre I was doing the best I could, but then in April 2021 I had a big attack which left me unable to walk without a stick and I felt even more fatigued. The attack also caused some of my old symptoms to return, exacerbating the problems I was experiencing.
If I had not sought help it would have been a lot worse with no other help on the horizon.
I was a bit nervous about coming at first and seeing lots of other people with MS. I had a misconception of seeing my future, but this was not the case at all. The Centre has supported me mentally and there is a huge sense of belonging. It’s ok to not be ok!
Since I started coming I have had help with my mental health and this has improved my outlook on life as well as giving me the tools I need to navigate life.
Physically the impact is huge. The fatigue I experienced was overwhelming and I’d wake up in the mornings feeling like I’d been on a big night out. It would be hard to concentrate and my sight, speech and hearing would all be affected. The Centre runs a course on fatigue management and this has helped me pace my day and provided me with some strategies to help with this.
I attended a course of acupuncture which I was really sceptical about to begin with but it has really helped with my fatigue and bladder issues.
Being diagnosed with MS has helped put some perspective on life and it has encouraged me to go out and do things that I never normally would have done. I did a London to Paris cycle ride, and I have been cycling around the Goodwood Motor Circuit which was all for charity.
It has made me realise the importance of inclusion so I have become part of the inclusion network at work, helping to ensure that my workplace is accessible to all and everyone is accepted by all. It has been really rewarding and fascinating to listen to other people and what they have faced in life.
Now I am continuing to improve my fitness with the help of the teams at the Centre and enjoying the new phases of my life.
My advice to anyone who has been diagnosed with MS is to accept the help of the Chilterns MS Centre and all that it can offer. It really does make a big difference. There is so much help available and the atmosphere is like a big family.
If you would like to take part in any of the services mentioned above, please contact Amy Smissen or your normal physiotherapist who will be able to advise you on how to take part.
* Optic neuritis is a condition that occurs when the optic nerve is inflamed or experiences demyelination. The optic nerve sends messages from your eyes to your brain so you can interpret visual images. When it is irritated or inflamed, the nerve doesn’t carry those messages as well and can lead to discomfort and vision issues. For 1 in 4 people with MS, optic neuritis was the first MS symptom they noticed.
** This may seem young but MS is most commonly diagnosed when people are in their 20-40s, although it can develop at any age. In the UK, MS is one of the most common causes of disability in younger adults.