Taking a can do and positive approach to MSPosted on 13 December 2018 in MS experience share
It was just over 10 years ago when I was diagnosed with Primary Progressive Multiple Sclerosis. I don’t remember it as a red-letter day or anything like that, I just remember it was January 2007.
Of course, I had symptoms before this and like many, I couldn’t explain them and mainly ignored them. I had been to the doctors to ask what it was, but the idea that it could be MS was not even something I had considered.
It was actually a relief to find out what it was, because I was sick and tired of making excuses and wondering what was wrong with me… So, to finally have the diagnosis, gave me an explanation to what was wrong with me, and now I could actually move on.
At the time I was a senior manager at Tesco and diagnosis meant that my job would change significantly, now that we knew what was wrong with me. It is also clear that my days of stomping up and down shop floors managing departments was over. The next couple of years resulted in me moving from job to job within Tesco to make it more and more accessible. Unfortunately, this eventually lead to Tesco retiring me on ill-health grounds.
After Tesco, I was very committed to finding out what I could do next and proving to myself and others, that this wasn’t the end of my working life. I felt I still had more to offer the world
I must admit, even with all this going on… There was a secret part of me that thought that my MS would eventually get better and I was more concerned about how I could go from using a stick to walk around, to going back to walking around normally again. The idea I would eventually have to use a wheelchair or mobility scooter, as I do now… Didn’t really cross my mind! Even when people said it would probably happen, I just dismissed it. Maybe I was in denial or maybe I just wasn’t ready.
What’s out there.
I spent my time looking for what I can do now that I had MS and was no longer at Tesco. However, everything I read, heard or researched… Seemed to say to me that my life was over and I should basically either sit down and watch TV for the rest of my life or go to Switzerland and take my own life. This at the time in 2010, seemed to be the overall message.
I personally see myself as a strong willed and positive person and was horrified that such a negative message was out there. There didn’t seem to be anything objective or anything that was taking a can-do approach. I thought, what kind of message is this to me and others being diagnosed with the condition?
After viewing more negative media coverage at the time, both on the news and while watching soap operas depicting people with MS…. I finally thought, enough is enough!
This resulted in me founding and launching a new organisation called Positive About MS in January 2011. The aim was to help other people affected by MS, to take a can do and positive approach to the condition.
MS shouldn’t mean the end of your life. Of course, it’s not a life choice or something to look forward to. It’s just a change in circumstances. It shouldn’t mean we give up on life, we just have to approach it in a different way… and that’s what I aimed to do.
Positive About MS was exactly that; it was looking at the condition in a positive way and bringing some objectivity to the discussion. So rather than just having what felt like a negative message and perception of the condition, it brought a different way of looking at it.
What’s more is that I realised I wasn’t the only one! There were many other people wanting to take a can do and positive approach to the condition… they just needed a platform. This has resulted in Positive About MS growing in popularity and now being a 20,000 strong community on social media!
We are still the same people… We still have the same hopes, dreams and ambitions we had before the diagnosis of MS. Yes of course MS means that we might not be able to do certain things… But there are plenty of others we still can do and we should work towards achieving them.
We are also very lucky, in the times we are currently living in… Technology and opportunities that are available now, were not available just 20 or 30 years ago. If you had MS in the 1980s and struggled to get about, you would just be sat at home waiting for phone to ring or someone to knock on the door. However, in this current age of technology, it allows us to meet people, talk to people and engage in meaningful conversations just from our smart phones… It really is amazing!
In addition to technology, the facilities, treatment options and diagnosis of MS has also developed. The products, services and specialists available help us to enhance our MS lifestyle.
Yes, I understand, we can’t always be positive… and I am realistic too! I understand we have bad days and things can be difficult sometimes, and frustrating too. I actually address this on the positive about MS website where I talk about the ‘Bad Days’ and coping with MS.
The overarching message of positive about MS is taking a can-do approach and also working out what you are good at, rather than focusing on what you can no longer do. There might be things that you have always wanted to do, but never have a chance to? Maybe now because of a change of circumstances… You can now do them.
I have met amazing artists who paints with their mouths, I have spoke to amazing writers who dictate their articles via software and i’ve watched inspirational people break records and win medals from their wheelchairs. All of whom who didn’t let their disability get in the way.
So maybe we should think about MS as not being the end of your life, but the beginning of a new one.