GOODBYE LITTLEGREEN CAR... I LOVED YOU... NOT !

Today I became a non car driver.
After being a driver for 47 yrs, its a big loss.
I have given up my Motability car. However Calderdale Volunteer Transport seem to be able to take me to anywhere I wish . They are kind and careful. With them,  I can sit in my chair and go wherever I book.
So far I have gone to Rugby ( for Oliver's christening, and to The Works at Sowerby Bridge for lunch and drinks with Samaritans. I have booked a trip to Tod for the AGM of the gallery next week and also a trip to Halifax.)
Each trip costs , on average , £30,. BUT I will now get my DLA of £55 per week to pay for these. Formerly it went towards the car , so I never did see it.
But, indeed , it is sad, after driving for 47 yrs , to not have access to a car. In fact , though I always had access to a car, I was 34 before I had my very own first car. I chose a Bluebell Blue, Citroen 2CV. Its number plate was C22 UVN.   I wonder where it is now?
I had such fun with that car, which ended with my divorce. Its value went into the divorce settlement. I got the Citroen BX ( Anthracite Grey) and my husband the 2CV and the caravan ( an Avondale Leda).
My 2CV was sold to a nurse from a SCBU, ( Special Care Baby Unit).
 I know not where since. But 2CV's are renown for wearing their dents with pride... and with its simple engine, I expect somewhere it goes now.
The BX that I got was kept for 3 yrs, until the hand brake failed and it ran down the road into a wall. It was a write off !  I now engage gear when parking in hilly Calderdale ! (Well I used to , when I was a driver!!!!)
I passed my test at 18 despite having my first lesson on the 18th of Feb 1966, the day after my 17th birthday.
I took three tests. The first I failed on the Highway code. The question "Why are double white lines?" floored me. 2nd test I failed. Don't know why but the instructor said I was Brutonized... the chief tester being a Mr Bruton !! Third time I passed.
I went on a car Rally that afternoon. Mum and dad didn't know !!!! I used 5/- and put 2 gallons of petrol in the car. ( 5/- is 25p now!)
So it with mixed feelings that I am car less. But the car was a trouble always .( 8 visits from the RAC !!!)
The other reason is that the morphine is making me slower to respond. I don't think I would be safe for myself or other drivers.
 It is good to end my driving career with a no accident record...... well I mean proper accidents. I did have a few claims for backing into a large  stone , backing into a fence, backing into a bollard !!!

So my Little Green Car did me proud today..... it wouldn't start !!! How normal !!! And so it achieved a total of 9 RAC visits.... they had to come today. Paul from the RAC making his 3rd visit and on the cars last day !!! YEY !!!!!!

HUG ME, I'VE GOT MND

IT''S WEDNESDAY, CLEANER DUE TODAY

I woke at 4:00 this morning. I tossed and turned and eventually got up at 5:15 to make a cup of tea. This was no easy decision. 
Remember I have to put on foot support, move to the bottom of the bed, balance, move into chair, unplug , turn it.. go to loo (inevitably when you wake up), get to kitchen. Stop chair, stand, balance, fill kettle,not too full  !!, as then its too heavy, put on, reach for tea bag, fill cup, back to chair, move over kitchen, get in position to open fridge for milk, which requires I turn chair around, Milk in... carry hot tea carefully to bed room, pop on window sill as I balance ...moving along the cup with free hand. Tentatively get cup on bedside table. Drink tea. Watch sky get brighter, fall asleep at 6:30.. wake with alarm at 8:45.

Same process again, but this time I put coffee in cup!! and don't go back to bed. 
I watch the cows in the field, and eventually get cereal, eat some of it and manage to load dishwasher. ..... Four trips to utility room, each involving a trip to turn in the hall, the right angle turn to the utility room cant be manoeuvred in one. Each piece placed involving a balancing act....

Shower time. Got into robe and was just about to turn tap on when I realised I was in the wrong chair! In swapping chairs I got them totally stuck together, It took about 10 mins to do the transfer!!

Shower, hair wash. Clean clothes. Getting clothes out isn't easy, as yet again I have to balance, whilst reaching for a jumper I have to catch myself on the wardrobe door , to prevent a fall,but it swings... I thankfully land on the chair!!!!!!

Dressed, another cup of coffee.. same process.

I rang David re car. He answered (YEY! ???) said be was getting in touch with man at Motability. He would ring back.  
Rang Hosp transport to arrange transport for Thurs next week as I'm have a 24 hr ECG fitted.

I rang David, he had had a missed call from Motability, would ring them back then get in touch with me. 

NO CALL!!

And now we get to 12:30. Tracy, cleaner arrives. 
1:00 Tesco man arrives. As he picked up the 5litre bag of cat litter it split.. It bounced all over the kitchen.. into every orifice!! He got broom and was sweeping up when Tracy joined in with a dustpan and brush.. this caused further eddies of cat litter... what a mess!!! But the funniest bit of the day !!

Tracy did her stuff and as she was about to go the MNDA woman , Carol, rang back. She seems to be a terrier.. and is taking over sorting this for me. Thank goodness, I so need an advocate.

I then went to feed Meggie. I couldn't find her food tray. Eventually I saw it had been moved to the utility room... WHY?? 

It took some minutes to pick the bowls up, and I spilled her water on the floor and down my clean ( this morning ),  trousers!!!!  V V upsetting

This evening I have eaten. A frozen asparagus risotto, to which I added some salmon.

When I went to turn bedroom light on and close curtains, I saw my water mug by my bed. Why did Tracy move tea mug and not water mug??? WHY ???

Im feeling, sadly,  stressed... 

BUT tomorrow my easel and art stuff arrives,...... its been in store.

Normality ??? Hope so.

HUG ME, I'VE GOT MND

DAY AFTER BOOK GROUP

Was soooo tired after Book Group last night that I simply had to sleep and not Blog. The evening was great and apart from our book discussions my friends will either be at the opening of a-MAY-zing  or will be at the MND fundraiser,  or both!  Some people are kindly offering to make cakes too. Thankyou so much.


Difficult start to today, felt very low and depressed and talked to Christine about our trip to London tomorrow... was thinking of cancelling.... but Christine reassured me, and we are going! Have to be up at 7 (Hell) as have at Tod station by 8:10. But so looking forward to the Lucian Freud Exhibition... so hope all the planned help is in place!!!


Have made a decision today... will go for a car that can be adapted and have a hoist in the back... if my needs change, ( ie when I cant walk from driver seat to back of car) then Motability will take the car back and then I can think again about a Wheelchair Driver Car... or just decide to use taxis. Thank goodness that decision is made. To make it I had to balance need, money and time to produce an appropriate car. Feel sure I've made the right choice. It will probably be a Citroen Berlingo as they have big back doors... well lets face it, it's a van with windows!!!!!. Stylish !!!!


So, as I will be back so late from London, I won't Blog tomorrow.... but will be back on Friday. Until then:..


HUG ME, I'VE GOT MND

COMPLICATIONS!

The issue of getting a car should be simple... It always used to be.. I had so much money, went to a dealer, did a test drive, and bought the best car for me.

Now suddenly, it has become a mine-field.. and I've spent the whole day in that b minefield!
Under the terms of Motability you appear to be able to get a car for very little money, ie just the transfer of your DLA money. Not so simple with MND.
There are two sorts of cars that would be suitable for me. . The first would be a car adapted with the necessary hoist for a wheelchair plus adaptations so that I drive with my hands. The second is a WAV.. a Wheelchair Accessible Vehicle. The latter will/would allow me to drive for longer as you access the car via your chair, lock it in and use it as a driving seat.
Totally confused after days of looking at cars, I decided to go on a different tack. I rang the accessibility garage in Elland, (they had been the ones recommended as the one to do the adaptations). There I met Dave. He has been so helpful today. But as one solution is provided another issues raises its head. I had thought that the adaptations would all be part of the price.. To my surprise I learned today that these are extra. The non WAV costing between 3 and 4K extra. Dave then pointed out that a WAV would mean that I would be independent for longer ( good point), there is a nearly new vehicle , only 850m on the clock, which could have the adapt ions done completely for 8K. A Bargain..... compared to the new WAV vehicles which are 10+k.minimum!
So is it a simple choice.4k or 8k.....
Well no, it depends on if I can exit my home.. and how this is done. If the wall and lift system is used it will be 6mths before its in place , and this is expensive and is means tested... ie I will have to pay towards it..No benefits you see. If you have a benefit then you get all this completely free.. however if you have worked , have a reasonable pension, ( though not much) you have to pay!
So a WAV should be the  best choice , which will mean I don't have to walk round the car to use a hoist to release the chair, BUT I will still need to walk from the chair to the outdoor chair lift ( if that is what is decided as it is a cheaper option) so what is the point in choosing a WAV.
The answer , of course is to move... So I might look around... the whole thing is fraught and I feel so anxious... I'm in the last few years of my life and having to make impossible decisions, all so interdependent.

I recognise this is a rant.... I'm trying to get rid of my frustrations... why can't having MND be simple! and cheap!! It simply isn't!!!

And in and amongst all this I'm so trying to get my exhibition together... anyone would breakdown... I'm determined not to... but it's bloody hard!

HUG ME, I'VE GOT MND