My life with MS and Mutual Support

Mike was diagnosed with multiple sclerosis 36 years ago when he was embarking on a career in the armed forces. In this personal account, Mike discusses his life with MS and the group Mutual Support, for serving and ex-serving members of the Armed Forces and Reserves, which has been invaluable to him.

Following an active sporting youth, Grammar school and all the angst that goes with ‘being a kid’, I decided against university, and instead joined the Army. At the time (it was the Cold War period), this involved logistics, supply management, language and keeping the Soviets at bay. I was based in Germany and loved it, I even ended up marrying a German girl, Monika.

It was only six months later that my first symptoms appeared. Initially, my symptoms were loss of balance, weakness in my legs, and loss of feeling around the ribs and hands. I also lost sight in one eye. These first symptoms hit me out of the blue one afternoon when I was playing football. I’d been lucky before that and never had more than a cold (maybe the odd hangover). I was mega fit, I had a brilliant life and career ahead, and then – well, boom – MS struck!

When I was finally diagnosed with relapsing remitting MS in 1985, it was an absolute relief to know what was wrong. It meant me and my family could now start to plan how to live with it. Note that any illness doesn’t just affect you, but also everyone around you. I’d been unwell for a year and doctors finally agreed to send me to the Maudsley Hospital in London, where I had various tests done and was diagnosed with MS.  

To begin with, I was treated with strong steroids to treat the inflammation of my nervous system. And abracadabra I was restored to relative fitness! Although with some residual damage (I walked with a slight limp and got tired quickly), most importantly for me, I was able to continue my Military career.

In fact, I was fortunate enough to be able to continue until just short 22 years of service. By then it was decided that the progression of the MS meant that I was unable to effectively carry out my job, meaning I was given a Medical Discharge. It was the best thing for me. The Forces looked after me very well, and to me, it was just the next chapter in my life starting.

I now had another chance to make the best of my life, and I am just so grateful for the many people who’ve assisted me in achieving this. I’ve had various part-time jobs in IT, languages, management and mentoring, and with Mutual Support (I’m coming to that bit).

After finishing in the Army, I needed to have things to do, and a role in life (everyone does), but I also needed to be careful not to overdo things, as this can be detrimental to my health. An MS Nurse said a very useful thing to me, “For every action I make, I use at least twice as much effort as a ‘healthy’ person”. Now I understood a little bit more why I got so tired so quickly!

Having a reason to get up every day is so important, and having contact with people is equally so, I suggest you NEVER forget that.

One of the ways I’ve maintained connections with people is through the charity Mutual Support. It was formed following a chance meeting at a train station in London 35 years ago. Both gentlemen were newly diagnosed with MS and formerly in the Forces. They wondered, where they could go for help.

Yes, there’s the MS Trust and MS Society, but Forces people tend to be organisers and we have our own ‘language’ and are very proactive, they decided to set up a support group for the Forces, and that was the start of Mutual Support – that was 35 years ago, and from those two people we now have over 1000 members.

I have been an active member of the group since then. We support newly diagnosed as well as those who’ve left the Forces and not had support. We offer advice, benefits information, forums and ways of coping with the effects of MS on their lives.

I am now classified as secondary progressive. Over a 36 year period, I’ve become less mobile, various infections have affected me and I use a rollator to get around more effectively. For a long time, my pride stopped me from trying it, but it’s been brilliant. I am more mobile, and I dismiss my thoughts of ‘what if people look at me as disabled’ – to be honest, when walking badly with a walking stick, the chance of falling over probably made me look more disabled. Also, if people want to look down on me, they’re maybe not worth knowing!

It’s amazing how helpful people are – for a long time I’d say I can manage, I’ll be alright – I still do - but now if I need help, I’m not too proud to ask. People won’t ask if they don’t mean it.

Lastly, but very importantly, my father – an amazing man, lovely, cheerful, clever, who worked in the education world developing NVQ/GNVQs – was diagnosed with primary progressive MS aged around 60, and it developed very quickly. Whilst he coped with it brilliantly, in the end, his age and his weakened immune system contributed to him passing away earlier than he might have otherwise. Although MS is not hereditary, there is a slightly higher risk of family members developing the condition, which might be why both he and I got it.

My final analogies are – live for today (but do be aware of the future), enjoy life, don’t worry too much – just think there are always people worse off than you, and remember that no one is immortal – everyone is as important as each other!