REDUCED TO TEARS... AGAIN... WHY? ... READ ON ...

So, Alarm set for 8:30, to leave house at 10:00... get to Tod at 10:45. (Yes, it takes that long to exit house, get into car and drive the 15 mins to Tod).
My plan was to go round market and buy some flowers, then off to Boots to get a lip gloss and some moisturiser... all treats ! YEY !! Then , off to dentists at 11:40 and nails at 12:30. (being done a few days early so that I look special for my Birthday on Sunday.)

Having been shut in by snow for a few days I was sooooo looking forward to this outing.

Dressing this morning was really difficult. Getting knickers on a major event !! I managed without crying, but only just. I really do need help to get me up , dress, and even to get my breakfast, ( I'm always starving in the morning , and a boiled egg would be great... but only ever manage cereal !)

So Coffee and cereal ... but milk short so rather dry cereal... Tesco due tomorrow...

Leave house on time.

Push button to open WAV (Wheelchair Accessible Vehicle )... no response ..... Move closer.. NO RESPONSE !!  

The rear door entry simply would not work.

I tried and tried from all angles.

Eventually ,it dawned on me, the reality, it simply was not going to work............ 

Now, here it is important to say how I feel about the dentists. This was my third attempt to go. Once cancelled because of snow , once cancelled because the back door of the Green van (WAV) , wouldn't close and now the door wouldn't even open !!!!!...........  AND the dentists had bought ramps especially for me to enter.........

So I was reduced to tears ! The sheer effort of dressing this morning, the sheer frustration of the back door of the van not opening.... the sheer stress of living with MND.. and it being so difficult !!!!

What should I do ? I simply couldnt ring dentists in my weeping state.

I rang Liza, my eldest daughter, and having reassured her I was ok, that I was weeping because of the van, asked her to ring dentists.... she did... then rang me back........

BUT  I was totally wiped out by the efforts this morning .. both sad and disappointed... and ,     actually,             Bloody Mad !!!

RAC came. The reason this time that the door wouldn't open, was that the battery in the zapper which controls the rear door entry, was flat !!!

What else can go wrong???????

This was so simple, and in many cases would be a laugh, but, in the context of my troubles , became the straw that broke this camels back.

Luckily my mate Janice was due to arrive at 2:00 ish.. we had a great chat.. then Michaela (Physio) came at 4:00 ,and massaged my feet....... wonderful !!!

So , I'm calm now , but still wondering about how getting my knickers on tomorrow will go.
This disease is simply horrid !!

HUG ME , I'VE GOT MND

AND YET AGAIN !!!!!

So,.......... dentist visit this morning. Got up at 8:30 and had arranged for Laura to come early so that I could shower...

So dear Laura, arrived at 9:30... this was a big concession for her as it meant she didn't have a leisurely start and,in fact, had to take her partner to work early.... so thanks for being helpful Jess, and I hope the cuppa set you up for the day !
So yes, Laura arrived and pushed me into the shower.

 Showering is a major problem in my life! I hate to be unclean and love the fresh feeling following a shower.... but after an episode whereby I had GREAT difficulty transferring from electric chair to shower chair a few weeks ago, I decided that for peace of mind and indeed safety, I would no longer shower when alone in the house.....

 I do wash and dress myself but simply need the reassurance that someone would be there should I stumble.
At 10:00 Sarah, podiatrist arrived and changed the dressing on my toe. It is healing nicely... great. Sarah left with a promise to return next week to check toe and to give me a foot massage... wonderful !
I got dressed , had half a cup of coffee and set off to go to Tod for dental appointment.Got in Green Van... and to speed things up, got Laura to do my set belt.... Thought something was funny.... a beep beep beeping noise. Started engine, closed rear ramp and door.................
Well no, tried to close ramp and door............... it wouldn't.......... it didn't ............ I tried engine on......... engine off........... 
IT STILL DID NOT B***** WELL CLOSE!!!
THAT B***** VAN/CAR/ THING !!!!!!
AGAIN !!!!!!!!!
So, for the second day running I had made a great effort ! And great effort it is too......... I feel really ill each morn.... not just tired but often ill.... stomach ache head ache... well general body ache.......... 
I do know that after breakfast, coffee a cigarette and my meds that in 45mins or so I will be Ok....... but until then I simply want to crawl back into bed and stay there. It takes great strength of character to do more than sit in wheelchair and feel very sorry for myself ......
So character much tested ........ I rang the dentists, who simply couldn't understand that the back door of my car wouldnt close and were even more mystified when I explained how I accessed the WAV, what a WAV was etc........ It was left that, on this occasion, I wont have to pay for late cancellation but in future .... ?????!!!!!! 
So no dentists ! Drank the now cold, other half of the cup of coffee. 
Rang the RAC.
This time Ian came ....... nice thorough man. Had to read the handbook..... found no fault ....... Why ? It seems the battery (new yesterday) had to reset itself ???? But it also had turned off the airbags ????? 
Don't ask me..... I'm only the driver who wants safety and reliability ! BUT he did suggest we went for a drive ........... So once again, in pouring rain and heavy windy blusters  I went out. 
All was well.
BUT
Watch this space. I need to go out tomorrow....... the most important appointment .... It's nails day !
And if they don't get done , well ,all I can ask, is that you send me a hug via the nearest funny farm !!

(And just to add to the stress.. whilst writing this the settings went funny.... so if this is odd, it's really not me it's the computer !!! Bad workman I hear you say !!! LOL!!!!)


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

AND , YES, IT'S GREEN!

This morning I had a lovely shower... have had problems with drying myself... swinging the towel over your shoulder to dry can be very destabilizing... and I'm inclined to fall.... so I decided on a new tack... use a towelling robe. YEY!!!! It worked well. So no new towels, just a few more robes to replace.

Anne P arrived just after 11 and we set off for BrookesMiller...

David had a number of calls to make, we had a coffee. sad news the cogs of Motability sometimes go slow, I can't have my WAV car for another week..... so sad,

AND THEN I did get to see it... and boy is it GREEN... very very GREEN


Rested for most of the afternoon. Then a visit from Richard... looks like 8 weeks till the move... Ho Hum...
Well with the car at least I will have modicome of freedom. ....

Keep Smiling!

HUG ME, I'VE GOT MND

UPS AND DOWNS

This has been a difficult day, but will end happily as Chrissie and Andy are en route for the weekend, for the opening of   a-MAY-zing!  Rach, Chrissies room-mate at uni will also be coming tomorrow. YEY!!


The downs, it seems that Calderdale will fund the adaptations to the new bungalow.. as long as I put my house on the market. So I contacted a financial adviser and have arranged a meeting to get Equity release on this house.
Scott my OT visited and paid me a compliment, I think, that I am very proactive in getting stuff sorted, most people sit back and wait. But I want to live until I die!  


Good news form WAV provider they can get a lock down device designed for the Dragon wheelchair. So I shall have  test drive in a WAV, a Peugeot Impulse. Its a van really I can have black or dark blue... my choice is dark blue.


Good news from OT, the rise and recline chair is soooo useful, but not too comfortable. I can have one specially made for my needs... and no means test!!


Difficult:I got a letter from the DVLA. I may only drive until the end of May. I have to fill in a form to drive after that date and have to be assessed ever 3 months.So it is imperative that I get a suitable car pdq!!


Chrissie has just rung, just 30mins away. I shall carry on printing my bags till they come then wine and Pizza!!

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