Monthly Archives: January 2016

Things that go bump in the night can be explained?

A few weeks before Christmas I was lying in bed watching the film Ghost on TV, about halfway through a vase with some silk flowers in fell off the chest of drawers onto the carpet, I thought Vicki’s spirit might be playing a joke, so I got out of bed and as I picked it up something ran over my foot I put on the light in time to see a small rodent run to the space by the lift shaft.

I remembered the night before hearing some lite thuds in rook below, (no carpet downstairs its easier for wheelchair) Willow (cat) sometimes brings in live playmates and this was one that got away from him. Over the next few days or so me and the 3 cats saw ratty as soon as it stopped making screeching noise cats left it alone, it then moved into my new kitchen (big mistake) it went behind tumble dryer, fridge-freezer and climbed up heating pipes under the oven unit, so off to B&Q for traps. Back home traps set with chocolate, things put back holes for central heating pipes filled, I sat in front room with a coffee less than hour later I heard a loud snap the trap was sprung and ratty was dead.

Christmas eve I put a few drops of Vicki’s perfume onto the silk flowers in the bedroom and top of the stairs for when I came home after the service at Lichield Cathedral, Christmas morning 3am 1971 is the time I arrived at Vicki’s parents house, so every Christmas was our day, also Vicki passed away on 25th March so the 25th will always be a special day. I digress over next couple of weeks I stopped noticing the perfume, then after falling asleep watching a recording of Mash I woke up TV was off I felt or sensed something a sudden whiff of perfume then it was gone. The window was closed I couldn’t feel a draft, the same has happened with fresh flowers, just when you think it’s time to take them out I get a sudden burst of flower perfume.

Some may have an explanation, others might say Vicki’s spirit is present and watching over me, either way I don’t mind, as I’m typing this all is quiet apart from the pitter patter of the rain well more like someone tapping on the windowsill and the cats are sleeping

I have an open mind

 

A Carers Life After MS

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