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

THE WHEEL-CHAIR/CAR SAGA,, A DIFFICULT AFTERNOON

Today was a busy day.. Rebecca came to move push zimmer into car, as she arrived  early she managed to empty dishwasher , load dishwasher and fold and put away washing. So a great start. Thankyou Rebecca and Iris. 
Without a cleaner ( she's on holiday) this week, it has been difficult.. and also managing without a fridge/freezer.. sadly, I've got behind in tidiness, as to tidy takes so much energy. Help from good friends is  invaluable.


Last evening I went out, and was so grateful for lifts, but when you cant move yourself  in a push wheel-chair, you  can feel quite disadvantaged and quite  vulnerable, you cant move yourself to be sociable.


 I seem to get the feeling that others don't know how to approach us, ie the us with MND. But my view on this is, that we,who have MND, and are trying to cope ,....................... please people do give us your support. We are just normal people who have a shit illness!


Anyway all my difficulties  were due to end today.. I was supposed to get wheel chair, then take it on to Brookes Miller at Elland to be measured, to have lock-down fitted. This would have meant that I would be independent and free in so many ways and would collect car on Friday... 


Yes, I would need help to charge chair, and to get me from back to front of home. But I did realise I could get neighbours to give me a lift .......or even ring a taxi to do the move. £3 would be a small price to pay for the freedom I would have...


So after a visit to Misty Morn, to check on paint colours, I drove to Wheelchair services in Halifax. 


We did tests and found that when I reversed the wheels caught the foot rests and scraped my ankles. Realising that if the chair was tilted then this problem was solved. Then on to kerb climbing! Wow how terrifying is this. You have to approach kerb with speed and keep going. if you don't keep up speed then you get stuck! To get off curb you have to approach backwards . Haven't got the vocab to describe this hanging and bumping  in mid air!! Believe me I shall avoid kerbs wherever possible. Heaven help any person who parks in front of a dropped curb from now on ... they will so get the edge of my tongue!! 


Unless you have these challenges to face you simply don't know how hard they are. 
Olympic games , we all deserve gold medals!!


So, with new shiny wheel chair in back of green van, I set off for Elland. Getting used to controls now... feeling good.. freedom is nigh!!


Get to garage dept. Having looked at car and chair, there was much shaking of heads. The lock down will need to be special as the height of the chair is slim, any low lock down will scrape getting into van and also will scrape on any rough surface.. even including door bars between rooms.... so no use... The appropriate lock-down will cost £1000. 
I had been given to understand that whatever lock down I needed would be free from Motability. I believe I have been mislead.


SO... not only do I not have planned freedom this Friday.. a weekend of fun with Lisa, the ability to go Chrissies Baby shower ( which she has planned with a place on mind with ramps and disabled toilets). but also I still can't even  get into doctors, cant go round shops without a pusher...etc etc  .... and at the end this it  could all cost £1000. 


£1000 in other terms would be 60-70 hours of a carer.


Waiting another month could be 1/24 th of my life..  It has been 3 months, .........1/8 th of my life waiting for wheel chair, and  since DLA award  in Jan, (when I could have had a car, but have waited to get the right one), it's been a possible 1/4 of my life...
( these fractions worked out on MNDA expectation of life of 2 years..even if its 3 yrs or longer. it is doubtful that I will manage to drive round, and not need considerable help after 2 years.)


Dramatic these effects....
Most importantly it's the mental effect not being free,the mental effect of having had to wait , patiently, for the wheel chair, and yet to find that I still can't use it...


This is so, so , terrible... much more than frustrating.....you cant imagine. 


I want to use, live my life for as long as I have. 


If I were rich, so many of these problems wouldn't exist... but I'm not.... where is the morality in this.... I've been an honest, diligent worker all my life.  
I don't mean to be greedy, and I do realise that there are many others in need, but get a grip government, this is simply not good enough...


HUG ME, I'VE GOT MND

HAPPY/SAD

Today i have been so happy in so many ways/ I found out that my friend Liz sold her cakes at her school. making more money for MNDA.. Total now £420. 63,,, wow how brilliant is this.
I rang wheelchair services, they had promised a soon appointment for outdoor/indoor chair... but time has passed and no appointment. So when I rang and was offered mid June appointment, this  I queried... Then they found an appointment next Friday, as I am a priority... YEY.
Really great news ... a Fiat Qubo(WAV)  will become available soon. It's second hand, but through the Motability scheme and thus only takes my DLA Motability component plus about £3500... . The car will allow me to drive from wheelchair,  with hand operated acceleration and brake will enable me to drive for as long as I can. It will probably be green... not brilliant, but at least not yellow or gold, which I simply couldn't cope with.  Colour is really important in my life.

The sad bit in this Blog, is that I have, for the first time, had to rely on indoor wheelchair  as my legs are so so weak.

But, I guess, that's  MND for you!.

HUG ME , I'VE GOT MND

WOW!!!

Today I held a fundraiser for the MND Association. It was at the Platform Gallery, Todmorden. So many people came, so many friends helped. I am so, so so, grateful and best of all we raised £406.13 !  


I am so happy, but so very tired. This has been an exhausting week for me. First 3 days in Sheffield Hospital under Prof Shaw, then getting this together.


I feel as if I will sleep for a week!! If you have MND , you will surely understand.


ps as well as all the people that did help I wish to thank all the people, including my family, who couldn't attend , but sent their best wishes for a good afternoon.. It certainly was!

HUG ME, I'VE GOT MND