II heard of my diagnosis at the beginning of December 2011...
It was on a routine visit to my GP re mu Thyroid levels.... It was Friday evening, late. I had no-one with me... my GP said she had had the results of my MRI and electromyography tests and it was confirmed that I had MND. She gave me a print out of info re MND which said that life expectancy was 2 to 3 yrs ...
How horrified was I .
I decided to wait til the Monday morn and ring the neurologist... clearly he was horrified that I had been told in this manner...
He then made an appointment for approx 12 days time,
I decided to use the time t think about my future with MND and to google as much info as I could.
Fully armed with info and a plan for my future ,I went to see the neurologist.
He was kindly and a support plan was put into place immediately... however. as Christmas was coming up this didn't swing into action till Jan. I did , however feel supported and knew that this time of thinking was good.
It was only then that I told my dear neighbours, then my very best friends and eventually my girls ..........of the diagnosis...............
So how did I cope?......
I decided that I would try to live my life as I had done. always. I recognised immediately that my life would involve having carers eventually, and \I hoped that they would take over the mundane and difficult tasks that would use my energy, allowing the special events in my life to still occur.
Of these painting would be a priority.. It is................ and I still do it.. I have an exhibition of my work in October this year........
I had a wish to go to the island in the Bahamas , where I lived when I was a child........... but soon it became obivious that this would be impossible.
My next wish was to go to New York...... my friends said they would go with me......... but this didn't happen........... sadly.................
my next two wishes were to go to Glasto 2013 (especially when I knew the Stones were playing !) and to go to Whitby via Yarm (where I used to live).
So to Glasto .......... any trip like this takes planning. I hired a big enough car to take myself in wheel chair and all the equipment. This included a tent, hoist, commode and luggage. The luggage included yellow bags, dressings, scissors, bedding, warm clothes ( I'm always cold ), tena lady, gloves and all the normal stuff like torches...
I had organised that a hospital bed would be delivered to the site.
I must admit that the people on the disabled site were of a great help. (Lots of people on this site hire vehicles.. they are probably people with walking difficulties rather than people like me , and you, who cant weight bare and utterly rely on a chair. ) OH I organised that our tent would have electricity, IE to charge chair during the night and the hoist during the day and also to power the bed..
So planning................. is of the essence,,,,,,,,,,,,,
Also the choice of carer is important.... I had a choice of two........... the one I chose was a nurse (daughter of the woman I always have gone to Glasto with). I knew she would be able to care but wouldn't be phased by the enormity of \Glasto ,as she had been there before.
My other possible carer would have been great as a carer............ but , as she hadn't ever been to Glasto, i feel would have been overawed by the whole place, by the sleeping in a tent, and by all the practical adaptations that have to be made in such a situation.
I think its important not to cling to your carer in outing situations. Thus after breakfast and dressing me my carer went off... returning at 2;:00 so that we could go to the Pyramid by 3:00.
There I stayed till midnight .. \My carer discreetly emptied my catheter.. I was surprised that people didn't stare.. She kept me in water and food.
It was a great shame to me that I couldn't mooch around the site as I always had done... but this was too difficult.. The roads//tracks were so rutted that travelling in a wheel chair was mega uncomfortable........... so you do have to make compromises.
HOWEVER I was only too happy to be on the site and to see some of the bands... especially The Rolling Stones.
So you see ,you can do special things with planning and with an element of compromise..
its sad that compromise is past of our lives , but sadly it is.
I do hope, like me, you are able, want to, do things that others say are soooooooooooooooooooo difficult........ THEY NEEDN'T BE.
HUG ME , I'VE GOT MND
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