The MS Trusts Continence Question Time

In 2010 I wrote a post here on my blog and it was a post that I agonised over whether I should publish or not. It was a very personal post to me on the subject of bowels so I didn't know whether I wanted to put that out there but I also knew that it could, potentially, help people. I knew that if I'd read a post like it, it could've helped me and that's what I started this blog for so I published it.......little did I know the affect it would have or where it would lead me! :-)

This is the link to that post!  http://talesoflifewithmultiplesclerosis.blogspot.co.uk/2010/08/peristeen-hard-story-to-tell.html

After I'd published the post I received a lot of positive reaction, which was great! The general feeling was that it was really helpful. So I was delighted! 

Not long after I'd written the post I was contacted by the MS Trust http://www.mstrust.org.uk/ They are a charity that was set up to provide free information to anyone affected by MS. They have a quarterly publication called Open Door and they wanted to know if they could put my post into their publication. I was staggered but what a great way to get the information out there. I agreed and with a few tweeks, so that it would fit in the magazine, it was published!

I was very proud, although it had been difficult to write and it was very personal to me, I had decided that it needed to be out there to potentially help other people in my situation and being published in an MS magazine was the best way to do that!

Last year I was then contacted by someone else at the MS trust. They were putting together two booklet publications about the Bowel and Bladder and they were asking me if I would look at them and provide any comments or suggestions. 

I was incredibly flattered, after all I'm not a professional expert in this field, I just happen to have MS which has caused me to have issues that have made me an expert in my own symptoms but if in dealing with my symptoms I have picked up knowledge that can help others I'm more than willing to share that information!

I didn't have to do much, just read through the document and let them know what I thought. I did suggest a couple of things but it was pretty good anyway! 

I guess I'm known in the MS trust as someone they can go to when they are doing something to do with continence because around the beginning of March this year I was contacted by someone else at the trust. They were putting together a Question Time type of panel. It was to be a Continence Question Time. There were to be a few medical experts but they also wanted a couple of people with MS who have or have had issues with continence to be a "real" element on the panel. 

Again I felt very flattered! After all I don't have an qualifications in this field, it's all just what I've picked up whilst dealing with my own symptoms! 

Anyway I decided that I wanted to be involved if I could. They wanted to get us all together and film the session so that they could edit it and put it on their website all throughout MS awareness week, which is 28th April to 4th May. 

I ended up going up to Letchworth for the filming but I was the only person there with MS as the other person couldn't make it. 

It was a long day as I travelled up from South Devon but it was well worth it! There were three healthcare professionals - a Neurologist, a bowel and bladder care nurse and an MS specialist nurse, then a chair person and me! 

The MS trust had put out on Twitter and Facebook what they were planning on doing and asked people to give suggestions of questions they'd like to ask if they were able to sit down with a panel like that and so we had legitimate questions to answer. We each took the lead on a question that was most relevant to us. 

The whole session was filmed and took a good couple of hours and from that they are editing it so that they can put it up on their website www.mstrust.org.uk for MS awareness week. 

When I know that it's on their website I will put the link on my blog here so that you'll have access to it! 😀

XxXxX