ANOTHER DAY IN PARADISE !

Another great night last night. Shower and a foot massage before bed. YEY !!!
I was woken at 7:30 by the carers . Very early, but I'm feeling so much better that nothing was going to phase me.
BUT then it came to the transfer using the standing hoist. There have to be two people..... and I'm still  not sure why ,as when in this hoist I am completely safe. Anyway, two carers arrived, one knew a little of what should happen and the other , not a clue ! 
So who instructed them ? Well me of course !!!
Breakfast fine and at 9:40 I left in the Green Van for my appointments with the psychiatrist and then the social worker in Hebden Bridge.
The medical centre has disabled parking but the road was narrowed by bad parking of others. So I decided to back out and look for another space to park. Not easy to find as Thursday is market day in Hebden, It was then as I was reversing slowly, that a car came round the corner and simply put his hand on the horn in annoyance. I wanted to say, walk in my shoes mate, but of course he never will ! So back I go up narrow drive, let him pass and complete the manoeuvre. The parking gods were with me, a perfect space for disabled at the end of a row so I could have space to open the rear exit.
I exited, went to appointments . It seems that as the NHS are paying 60% of my care package I will get no choice in whom is employed ( VERY annoying).
Bright sunshine and still feeling positive, I went to pharmacy to see when much needed catheter supplies are coming .They hadn't been ordered ! Would have to go across the road to the Dr's. No problem but annoyed a little.
However I needed moisturiser, I use No7. This was brill, 3 for 2 ! At £23 a pot quite a saving but with the numerous vouchers I had I ended up getting £10 worth of Boots points. So a purchase of £69 came effectively to £36 ! A killing !! Yey !!
Off to Dr's. 10 bags had been delivered (you need one per night ) , and no repeat !! Anyway the receptionist was very helpful, so all should be well, fingers, or should it be legs crossed !!!
Back to the car. It wouldn't start !!  AGAIN. I tried and tried but the key would not turn far enough. I immediately worried that my right hand had lost strength..... so RAC to be contacted ....... But catheter needed emptying if I might have to wait for them.
Back to Dr's . I go into disabled loo and its helpfully on a plinth. But this means I cant get tap over loo. Off to friendly receptionist again. I explain the problem to her ( and the rest of the waiting room !!! She gave me a small container. It took 3 goes of stopping and starting tap to empty bag!!!
Back to car. Ring RAC, thankfully phone number on the sticker inside. BUT they needed the reg number, Back I go out of van and read it to the RAC man. They were helpful and kind as ever. And arrived within 30mins. This gave me enough time to go onto market and buy a samosa, I was hungry. It was lovely !
RAC arrived and the B Green Van started first go ! I had been holding brake down as I turned key and this is very awkward as hands have to cross over in small space, thus my hand was not strong enough. So now I know I had been given mis-information and just have to use key, no break. Easy Peasy.
I got home at 1:40. Shattered !!
Fell asleep in chair, coat still on, Im so cold.
20 mins later..........Phone call. Landlord wanted to come with plumber to fix , not hot enough shower !
Maria popped up. LOVELY ! Had a cupa together and she rubbed my feet warm.
Michaela arrived. I had to go in stand up hoist and try walking. I shuffled !! But the first movement for 2 months!!
Carers arrived as Michaela was about to leave. Made me a salad, got steak out and chips....... so now , when I finish my GnT !! I'm off to cook!

ps . I'm feeling so much brighter, that ,though this was a challenging day, I have survived.......... with only one set of tears, and they were of sheer frustration!!!! 

HUG ME, I'VE GOT MND

RAGE, RAGE ! AGAINST THE MND !!!

SORRY YET MORE MOANS.... WILL GET BACK TO SOME SORT OF BALANCE SOON....

I do so hope...........pray!!!!

So the thoughts/ happenings of today........ as bullet points !!!

• Woke up, knew I had to be at Hx Hosp for 10:15... Knew I simply could not do it. So I phoned and cancelled.                                                                                                     It was a Spirometry test/check at cardiology. They were unbelievingly understanding and yet I feel such guilt at wasting NHS time......... I've now got it on my outpatient notes that I really can only manage afternoon appointments... unless life or death.                              Spirometry will test my breathing capacity.                                                                          BUT as I still talk in long sentences,  I know there is not any change... and if there is, it is very small.                                                                                                               When there is change I will need an overnight breathing apparatus and then will need to consider the op for a feeding tube.. PEG... but that is not for this week!!!...                          I have been helped by having an appointment at 1:00 on Dec27th,,so much better for me. Thankyou.
• Laura came and wheeled me in for a shower.Afterwards, I thought it would be a good time to make another Video... of me getting on my shoes and socks....... Video made.                      And can I publish it here!!!??? Can I heck as like!!                                                          Why did it work other times ?? Heaven only knows.                                                                I have spent HOURS fiddling with settings.. heaven only know who may maybe able access info on my computer!!!                                                                                                                         Will have to re film... sorry Laura.
• The pile of paper on my table is NOT decreasing ! It's full of documents I need to read carefully... and I have been putting this off for so long !!!                                                    I so need to get in control of this, it is driving me MAD. I want to SHOUT !!!! Why WHY cant I get a grip !!! ???
• Then at 4:00, B arrived , my lovely OT. She came with missives re toilet... a shower chair to wheel on to Closomat... No Bidet function then available ( I paid £2500 for this privilege) and or a riser which might work... but then no drying facility from Closomat.... THIS SIMPLY SHOULD NOT BE !!!! I have MND. I don't need all this extra crap !!!

And you know, all I wanted was a calm day, a day when I could paint , in a warm house with no stress. 

It's now 8:40 and so-far today I have had one bowl of cereal, many cigarettes, 5 cups of coffee and two GnTs... Fortunately A has made me some freezer meals.. so Chicken Curry here I come. 

BUT............. Inside I'm screaming. It should not be like this. MND is horrid, but OK I accept it, that's what I've got.. 

but all the rest of the sodding crap... It's not fair.!!

HUG ME, I'VE GOT MND

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THE WIND CHANGED DIRECTION !

Just noted I've had  over 9000 hits since I started to Blog!WOW!!!

Thank you to all who "hit " on me!!

Apologies to anyone who tried to see a new Blog in the last few days.. there hasntn been one, as life has been too depressing and negative to write about.

BUT

Today started negatively as all the problems I have were still not moving on....

However at 10 ,Mike from Valley Kitchens rang. My fridge freezer will be put in tomorrow! YEY!! I cant tell you how trying it has been to manage with out a fridge for the last 4 weeks!

Liz rang and offered to cook a roast pork meal (yum) on Sunday night, then watch closing Olympic ceremony together... what fun!!

Pip and Sue emailed to say they are passing through Tod on Wed, on the way back to St Neots, can they call in with fish and chips... YEY!!!

Richard responded to email.I can put stuff in kitchen ant bungalow and also store stuff in garage.. YEY!! John and Elsa to help tomorrow afternoon! YEY!!!

Sandra , cleaner, helped sort kitchen stuff and packed into car. YEY!!!
twitter.com
Martin, hairdresser, popped in for a coffee. He loaded yet more boxes into car.. YEY!!!

The only negative, is that the part necessary for my car is in Italy. It is ordered and paid for but will take 7-10 days to arrive. ( I have a very jaundiced view of these sort of promises, experience suggests it may well be 2 weeks). I so want to be able to drive to go and do stuff like choose curtains. But more importantly driving from A wheel chair with hand controls will take some getting used to... and I need to be confident for my drive to Northampton.. Chrissie's baby due Sept 6th... but babies can be early!!

So all in all, things are getting better. Due mainly to the help from friends. I will never ever be able to thank you all enough.

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