TODAY I FEEL SAD.

Today I feel sad.

MND certainly is a  progressive ,and for me, progressing disease.

This morning I couldn't stand , as I usually do, when getting out of bed and doing the transfer to my chair. My night carer had to help me.

Then, after she left, I needed the toilet. 

I couldn't get off. I tried on and off for about 20 mins, during which time I cried. 

Eventually I rang my neighbours, who fortuitously had popped in yesterday with their phone number!

So they got me off the loo! and \Ive spent the day trying to be positive, but not really succeeding.

I feel that if I were to go into the studio and paint, it might help. But my creative mind is blank at this moment.

Sorry to be forever moaning, but this is a diary of living with my MND.... for the public to read,if interested, for my family now and in the future. And you can't always be positive about things when you have MND. Because the reality is that it is horrid, horrid, horrid!  And mostly we do look on the bright positive side, but today, for me, that's a big ask.

Lets hope tomorrow brings some sunshine and joy.

HUG ME, I'VE GOT MND 

THE "HUG ME", NEW YEARS HONOURS LIST !

(in no particular order!)

A Posthumous award.. for dear Meggie : Companionship and loyalty.

Bethan : Care , Kindness and finding equipment.

Michaela: Care , Kindness and brilliant massage.

Richard: Offering this bungalow to me,  letting me choose the fitments and colours.

RAC: Being helpful, jolly and fixing the (B*******) van ... 4 times !

Laura: Bringing sparkle and freshness to me, and my house.

Ex Neighbours: Continuing contact and on-going helpfulness.

Ladies Reading Group: For not chucking me out!!!  even when I don’t read the books... and for help, visits and friendship.

Tesco Man: Delivering on time, unpacking and generally being helpful.

Carol at MNDA Connect: Keeping in contact and acting as advocate re Motability

Sheffield and Halifax Hospitals: Care, kindness and support given.

The Whole of HB Rehab Team: Consistency, speedy response and care.

Anne and Tracy: Calderdale Transport drivers: Being jolly.

Jill & K: Over The Top  Wonderful Hugs ..........and Chips !

The Coven: Pink Fizz, food and good times.

Barry :  Daring to be outrider , and general helpfulness.

Sweetie Pie : Lovely chats on the phone.

Matteo: Sparkle and cuteness.

Oliver: Lovely stories we tell each other, and for appreciation of my singing !!!!

Overgate Hospice: Reflexology, jacket potatoes, access to professionals and kindness.

Chris & Christine: Sharing with me, the A-May-Zing Exhibition.

Epernay:  Champagne

And finally, and most importantly, and too many to mention by name......

Family and friends (You know who you are) : visits, meals, txts, phone calls, emails, emptying and loading dishwasher, and dirty jokes (!) ,fun, laughs, and millions of other helps.. too many to mention...  

AND  for sometimes just letting me cry.  Thankyou.

HUG ME, I'VE GOT MND

ART MATERIALS AT HOME!!

Everyone was rather early today!!
 Pine furniture (Mytholmroyd),  delivering TV cabinet at 930- 10:00, arrived at9:15!!! Not even had a coffee by then!!! But so glad it's here. Now can use bigger table by my bed giving me space for TV and phone and water and tissues.

At 11:00 Howarths arrived with all my arts materials that had been in store. Exemplary  service ......as always.

At 1:00 not 1:30 as expected . Barry arrived to help sort. Ann P came at 1:30... and we worked together to store/place every thing!! YEY!! 

Just the garage to sort.. major job,,

I'm doing the sketches for the Calendar Girls production which is on in October at Todmorden Hippodrome. This is keeping me busy re art, for the moment. BUT I cant wait to get back to painting!!!

Tomorrow the road-test for me in wheel chair... I do hope taxi turns up after all the fuss re-transport.

Got a text from David, I might need magnetic handbrake?? More money??? 
MNDA Carol not back to me yet... but I'm sure she will be soon.

The car issue causes such stress. I seem to get really heavy heart beat when I think of it... that's why I'm having 24hr ECG next Thursday.. just to check.

OH , nicest thing, just before Barry left, he hoovered all the house. This gave me the strenght to wipe all the surfaces down. I so like a sparkly home.  

Thank you Ann and Barry for your help.

I am soooo fortunate to have so may such brill friends.

HUG ME. I'VE GOT MND

FRIDAY 31 AUG

I woke, as lonely as I had been ,when I fell asleep. Totally desolate, at the bottom of an Everest.

Jenny arrived late morning and we did some more sorting of boxes. I had 2 aims: to find my toothbrush and to shower. Eventually we found the toothbrush. Oh ! , the pleasure of clean teeth. But the shower was not achieved.
 
Anne arrived at 2:00. Leaving her to do washing up or some similar, I excused myself to shower. All clothes out, got into bath wheel chair...( Its one you use your hands to push (another first) and it has a horse-shoe shaped seat, so that you can wash thoroughly. )
So there I was poised. Water on.. cold..wait..cold..wait..cold..
Eventually it occurred to me that I could sit till Christmas and the water wouldn't get hot.

Anne suggested ringing Richard.( I felt like suggesting a cry!!).  He arrived with Steve and they both searched for the boiler. To this day I don't know where it is , but rather think it must be in the garage as water takes ages to get hot into the house. Richard found the fault, YEY!!! .... nothing to do with the boiler. The valve to allow water through had been turned off.
But by now my dirty body was dressed and it takes so much energy to dress and undress that I thought I would simply stay dirty, and I did.

Richard then spent a while sorting out email , BB connexion etc for me and both men fiddled with knobs and controls on things.. Stressing me out as I'm an instructions person, especially as the new stuff is not mine.. anyway, they realised I was getting anxious and stopped fiddling! Thankyou!

We also talked about carers and it so happened that Anne's dads, carer, lives in the road immediately opposite me. So contact was made and an arrangement to  meet the following day.

That evening Rebecca and Tom were due to bring over my freezer food. They had been held up and asked if they could bring it the next afternoon. As I has no food I did say that I hoped they could bring it , even if late.
Anyway all was resolved very happily as they came over bringing Pizza!! So lovely to see them all.

I went to bed. and even though I had been surrounded by kind helpful people all day I still felt the desolation ........ a horrid empty feeling.

HUG ME, I'VE GOT MND

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

STUCK !!

Two more places that I got stuck today.. and this is not another toilet story!!
I parked at Lidl ,over the way from the Salon Eden, where I have treat each week. This week a pedicure including a leg leg massage. This is with the Brilliant , kind  Becca. I had my treat but when getting back in the car, the steering was locked. I realised that when getting out ,I had had to use the steering wheel as a support and thus had locked it. Didn't know how to unlock... so with the prospect of Lidl fining me me for too long a stay, I had to get out the Nissan Book, wade through, until I found the page to learn how to unlock steering. Sorted , eventually , I got the car started.!

Next stuck moment. I had to go to Morrisons to get pics for new driving license...( must be done asap or I will loose license, also have to agree to assessment each 3 months... no prob with this ,as I should have adapted car very soon)... So got into seat for photo. Had to adjust seat to eye level... could Not get up!! Called to person ,who kindly got a member of staff. She not only got me up and out, adjusted seat and then waited for me to finish getting pics, then got me out again! I said .. do say how wonderful you have been to your supervisor, and thankyou so very much for your help and kindness. She said , I am the supervisor! So I said, do say thank you to yourself.!!!!

How kind people are. I had not realised how wonderful people are and how difficult things are when you have a disability.For instance: I can't cross a road in the time a light allows you. I always wave and say thanks to drivers who wait. And no-one has ever been cross of agitated... thankyou so much to everyone who is so kind.
Kindness is so necessary to people with disabilities, and makes living with such difficulties possible. Without such kindness from people I will never ever know, I don't think life would be possible.
There are those close to me, who help so much, and I truly thank you so much, but the kindness of strangers is amazing and, actually so unexpected and so necessary.

We, people with MND, are struggling and it is the whole world of kindness that makes life bearable and possible.

Today I have had  come to terms with the fact that I need to use a wheelchair in the house and that I can't get out of the house without help. Big Big steps to take on emotionally, as I'm sure you will understand.

I've had a great evening with Tony, an ex colleague, but today has been very very hard,and despite the ups ....the downs are hard to come to terms with.


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