Adapting to the progression of my MS
Mark Rainbow was a high flyer when he got his MS diagnosis. As his MS has changed over the years, his priorities have too.
In 2001 I woke up with pins and needles in my feet. I went to the GP who said “don’t worry, let’s see how it goes”. But then I got a private MRI scan and saw a neurologist who said “you’ve got MS”. My first thought was ‘am I going to die?’ The neurologist said no, but I decided not to make any plans.
Read more about how MS is diagnosed
I had just bought a business and I was in debt. And so I continued as usual – I ran my business successfully for 20 years and paid back my debt. I got married and had two children. I invested in another business with my own money. But over the years my condition progressed and I struggled.
Essentially the business failed. This meant that we needed to move house, and my wife said she didn’t want to move with me. We split up.
Dealing with the unexpected
I had to stop work six years ago, due to my MS, but I ended up embracing it. Now I’m on my own in a little flat. I have no debt. I live on benefits, but life isn’t so bad. I have a big interest in sailing, and I can still do this (with the Hanningfield Sailability project), and I go to the gym.
Going to the gym helps me to stay positive. It doesn’t stop the progression of MS, but it stops the stuff in my head. I’m not saying it works for everyone, but I’m lucky that I can keep that positive mind-set. I’ve never considered doing anything else.
I think it was my upbringing that instilled this in me. My dad ran his own business and my mum was a dancer. I learned to deal with ups and downs. Running your own business means that you need to deal with things that are not fixed. Plans sometimes have to change, sometimes the unexpected happens.
I didn’t choose to live on benefits, but if you don’t have any money it’s a good option – and why not take help where it is offered? I was lucky that my friends helped find me a home and my ex-wife is still on my side. You never win by fighting.
There is no magical cure for MS. I try to live with it and see what’s around the corner. Which isn’t to say that it hasn’t been really tough. Life is unpredictable, but it helps to accept it and deal with it as it is.
Moving forward
Having lost both my parents it’s hit me that I have to move forward. There’s no point lying down. When I became disabled it was incredible to realise what I could still embrace. When I found out that I could still go sailing – I do gliding and microlighting, through Sports Ability too – I thought ‘there are ways to get around this’.
I used to have flash cars and things, but now when I take people sailing it’s something else. I found out that helping people is better than earning money. I get such a buzz out of it. When someone realises that they can do something – it makes you feel a million bucks.
I want to help others going through an MS diagnosis to see that there is hope, that there is always something you can offer the world. I want my life to be about what I can give to others, not what I can get.
