It's funny but also wonderful how just a few minutes' chat with a psychologist can make a huge difference to confidence and therefore daily life.
I have been participating in a new trial of a type of acceptance therapy at King's College Hospital London and I believe it has been very successful. As part of this I had four work books to read through, a number of audio files to listen to, and a weekly 30-minute chat with a psychologist.
In one of my earliest chats I talked about the anxiety I felt about going out and about for a day and how access to toilets is a particular worry for me. Even though there is nothing the therapist can do practically to fix that problem, when she said, "I hear the same anxiety with almost every person with a muscle disease I speak to" it gave me that sense of not being alone and that made a huge difference.
Going to London
Living in Canterbury, we are easily accessible to London (55 minutes by the high-speed train) and yet going into London for the day seemed like a huge undertaking. In November 2015 I remember getting an email from Muscular Dystrophy UK about an APPG campaign on capacity for drug trials. Having participated back in 2006 on a myostatin drug (MYO-029) I thought I could perhaps contribute to this meeting. However, it was held in Westminster and I’d never got the train since using an electric wheelchair. I plucked up the courage, researched how to do it, booked the accessibility, strapped my fold-up portable commode to the back of my wheelchair (just in case of a toilet emergency) and headed off. It helped I had a good PA that day and knew they would help or advocate for me if I needed it.
It went well and I started to take my son, then three years old, up to London for days out. I was still very nervous and would fret for days before a journey about all the things that could go wrong: what if there was no one to meet us with the ramps? What if I was ill on the train? What if Thomas was ill on the train and I couldn’t help him get to the toilet? Every time we succeeded. I hoarded the train tickets as a trophy to prove I could do it. Fast-forward four years and following the ACTMuS trial my confidence grew to such an extent that I threw away 100s of those train tickets. This summer I travelled with Thomas and a carer to a different city every week of the summer holidays, staying overnight in a Holiday Inn and returning the next day.
Where we went
We visited the National Space Museum in Leicester, the National Railway Museum in York, the Life Science Centre in Newcastle, among other places.
During the October half-term we crowned our train success by taking the Eurostar with Tom, my carer, Aaron, and his daughter, Harper, so that Tom could see the Mona Lisa and the Eiffel Tower. At the Louvre they whisk you to the front and not only is it free for a wheelchair user and carer, there's no queuing for hours outside. In the room where the Mona Lisa is it's quite hectic and busy as people jostle to get a glimpse. Again, you get treated like royalty and taken to a special viewing area right at the front.
Anxiety is a horrible thing. I know first-hand how it can hold back not just you, but your family and friends. Getting the right support isn’t just about ramps, portable commodes and PAs, you need to get your head in the right place to push yourself to do these things. Before each trip there were hours of planning to make sure I wasn’t being foolhardy, and of course there were bumps in the road but I’m very glad that I was able to get out there and go on adventures with Tom.
- Find out more about Muscular Dystrophy UK's Mental Health Matters campaign here.
- Muscular Dystrophy UK's helpline is here to give you free information and emotional support. If they can’t help you themselves they usually know who can. Call: 0800 652 6352 or email: info@musculardystrophyuk.org