I’m sitting in my darkened living room, enjoying the coolness that comes from keeping all the windows and curtains closed on such a horrifically hot day as this. It is simply not worth the trauma of venturing out into the smouldering desert of a village that I find myself in this morning. I shall instead sit here, relax and reflect upon my latest venture, one that, only last week, saw me overcoming self-doubt and fear of speaking publicly yet again.
Back in February I was asked by one of my Neuro Nurses if I’d be willing to speak to newly diagnosed MSers at one of their ‘Getting To Grips’ sessions. Pulling out the flattery card, my nurse said that I’d be perfect for the job, seeing as I am one of their most positive patients. They basically needed someone to prove that life does not end with an MS diagnosis. I was flattered to be asked and it was an easy yes, especially as the course wasn’t scheduled ’til July… Well, what do you know – those 5 months stampeded by faster than a herd of raptors – and here we are in July!
There were several reasons why I wanted to get involved; perhaps the biggest of which was the fact that I’d been on this very course myself in 2011, 6 months after my own diagnosis. I therefore knew how important such sessions were to those who found themselves in this MesS. In preparing for, or rather stewing over, the session, my mind was taken back to 2011 and my own experience of the course. One overriding memory was of the continence and sex advisor (such a delightful blend of expertise) opening her session with the question, “Does anyone here have problems with their bladder?” To which my honest hand immediately shot up. Looking around I realised that I was the only one in the group to have responded, which meant that for the remainder of the session I was singled out for very personal questioning in front of everyone. For the second part of the session I was disinclined to be put under further public scrutiny; when the advisor asked, “Does anyone here have any sexual malfunction due to their MS?” My hand remained firmly down, along with everyone else’s. On a positive note, this course introduced me to other people going through the same turmoil as me, one in particular has remained a very close friend; I can never stress enough how important this has been in helping me deal with MS and how much I value this friendship (love you, Jody).
Anyway, as I sat in front of the small group of new MSers and some of their partners, I was struck by how anxious they all looked; it was like I was looking at my younger self and it was a positive reminder of how far I have come in those 8 + years. I spoke about my diagnosis story and all the awesome things that have happened since and it was truly amazing to see how well they all seemed to respond. I’m yet to have any feedback, but I got the sense that it helped them a lot to see someone a decade on from diagnosis and still living a fulfilling life.
I’m so grateful to have been given the opportunity to speak with the ‘Getting To Grips’ group, it’s something I never thought I’d be confident enough to do but it was so satisfying that I’d jump at the chance to do it again!
Another win for ‘YES.’
Well done 👍🏻 I try to be positive too and not dwell on things.
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My partner has Pom’s diagnosed in 1998, really get you, you think your world has collapsed but it really is people like yourself that are a light shinning full of hope , apart from the physical visible signs there are so many hidden symptoms to deal with , you are an inspiration to us that don’t fully appreciate what we have , keep it up girl 😀
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Well done glad you enjoyed sharing your experiences
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Well done! The newly diagnosed course is so important.
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Sounds like you did great Emily, well done x
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