After nearly 28 years of living with Multiple Sclerosis the last 5 confined to bed Veronica passed away in hospital where she had been for 16 days.
So what does an ex carer do, well once the funeral was over, in between fighting with the DWP regarding a fine because I didn’t phone them to say Veronica had died (I won that). I couldn’t stay in the house, to me in a way it was freedom but I felt very guilty at not having to rush home.
Gradually my life was changing, I had replied to an advert in the local hospital newsletter sent to Vicki July, and in August after meeting Jo Scott from the MS Society I became a member of a pilot scheme in the West Midlands as a neuro champion.
At the official launch I met and had a talk with the Neurologist who treated Vicki until 200, and as a result I went to a meet the scientist’s day at Imperial Collage London, and what an afternoon, not only a talk and video show but to see an actual brain cut and prepared for research, I didn’t even ask if I could take pictures.
Over the last 2 years I have met people with MS at various stages in their life’s struggles, met Clinicians, Neurologists Rehab consultants MS nurses whom we cannot do without as they are the force behind consultants, sadly like neuro’s there are not enough.
I have attended meetings many local, some a few miles away and some in London, I’ve been asked how I became involved, and have told them of our story (I can now tell it without my eyes leaking) well sometimes.
After badgering my CCG over the lack of Neurological services they put it into their 5-year plan, I was full of hope, not just for MS but all Neurological conditions. I was invited on to a STaR Group or Task and Finish group, alongside CCG commissioner, Clinicians and others at the hospital, sadly 18 months on I’ve realized that they are No farther forward, the Neurologist stayed on after his retirement and is now due to leave again, the Locum, well can’t say too much about that, and now 3 other Hospital trust are involved. I have cut back on a lot of my voluntary work to enjoy life as Vicki would want me to.
I have a friend that I met she is 33 and has aggressive relapsing MS, diagnosed 06 and now she has a live in support worker as the MS has progressed, I was sitting with her the other day, she has problem with speech and swallowing and after drinking through a straw she apologized because some of the drink was coming from her nose, then said she feels comfortable with me being there because I know what it’s like.
So what next, well I’ve had 3 lessons in sit-skiing and more to come my plan is to ski down a mountain slope next winter, and my MS friend and another wheelie want to come to the Snow Dome at Tamworth for a lesson or 2