I first had symptoms in the early 1980s and it wasn’t until four or five years later that I was given a presumptive diagnosis, which they did in those days. The proper diagnosis didn’t come probably until 1995. They would say “you have symptoms that may or may not be MS, go away and see how you get on”. And I did quite well I suppose. I’ve lived with symptoms for 31 years now.
There wasn’t any MS information I knew of at the time. I was a nurse, which might have been a bad thing. If you’re a nurse you only see people when they’re in hospital during quite severe episodes.
In 1993, we moved from Leicestershire down to the south-east. That’s when I remember hearing MS Trust co-founder Chris Jones on Woman’s Hour. It must have been about the early days of the MS Trust, just saying “we’re here and we have information”. I remember I was at a bit of a low ebb – I had moved away from my friends and maybe I was in place where I just wanted to pick up the phone. And Chris Jones actually answered!
I’ve been looking at all the information the MS Trust produces – there is so much there for people with MS now! The problem is you need to be able to limit yourself to what’s relevant to you in the moment of your MS. I should have liked the info about talking to your children about MS, how to deal with it in the workplace, as well as the wonderful information leaflets about managing symptoms and the disease modifying drugs.
Open Door is a brilliant way of keeping in touch with what’s going on. You discover that all sorts of people are living with MS. I feel that the MS Trust is really grounded. When you speak to the information team you feel that you’ve had a thought-through response. When there was talk of CCSVI there was the worry that if I didn’t go for it would I be letting myself down? So it’s good to have the balanced approach of the MS Trust’s reviews.
MS nurses have been a really positive addition to the professional team. I recently transferred my neurological care to a local hospital and it feels as if there are lots of positive things happening for all neurological illnesses.
I think that because the MS Trust is a small organisation the contact feels personal. I’ve contributed to books and leaflets and Open Door. Chris invited me to give a talk to staff at the Dept of Work and Pensions about what it was like to live with MS. I I really enjoyed the journey by train to London with my personal assistant, to share the advantages of the independent payments scheme and how benefits contribute to a good quality of life in challenging circumstances! When I read articles now by people living with MS it’s all very encouraging and uplifting.
In the next 21 years we might have a cure. It’s probably too late for many of us which is why it’s so important not to lose sight of the fact that people do get advanced MS and need a lot more practical support.