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

FRIENDS WILL BE FRIENDS

So, yesterday, Monday... I was in tears.. no-where could I get comfy.

I had arranged for Barry to ride shotgun, and go to Hx with me to choose carpet and also to go to M&S for ready meals.

BUT when he arrived I was in tears as my w.chair was so uncomfortable...... Barry went home (we had decided that the trip was rather less important than getting comfy),   ie to get the right tools to adjust  chair.

W.chair services had done cushions and chair adjustments,  but you have to sit in chair for some while to see if all is OK.

I had had a miserable weekend re chair. I had to rub Ibuprofen cream into neck and take paracetamol to help with pain and strain. I was so upset, why can't I just have a seat that makes me comfortable.... surely so little to ask!!!

Anyway, Barry stayed and adjusted chair. When He left he said he could pop back at any time to re adjust... a real friend.

Barry also went to get prescription... I run out of Riluzole ( the one that extends my MND life by 5 to 7 mths) on Thurs... but though prescription  was supposed to have been written last Friday it wasn't.
He rang surgery this morn but they wouldn't say if there was a prescription ready, as he didn't know my dob!!!
I had further conversations and eventually prescription was promised to be  ready.... As I was at Hospice, Barry said he would collect.... BUT, yes, pharmacy didn't have all the drugs in stock, ( why am I not surprised) ......... so he will (kindly),  collect tomorrow.......

At the hospice I joined in the Blue Peter style art (!)... making a door wreath......... but I didn't choose typical red and green.. I got purple and pink.... will look good in my lounge!!!

I then had a session with the alternative therapist. YEY!!! I will get reflexology or a shoulder massage each week... YEY !!! sooooooooooooo welcome. I also will see Physio to do stretches.... another YEY!!!!

I came home and another friend, and her partner,  asked if they could pop up. YEY!!!! We had to drink black coffee till Tesco Man came !!!!... but then had a lovely GnT. YEY!!!
One of my friends massaged my feet and made sure I had warm socks on. WONDERFUL..... YEY!!!!

I am so lucky/ indeed blessed , to have such kind people around me.

MND seems to bring out he very best in so many people, I never knew that I was so loved, and I am so grateful, so amazed , at finding this out....... if I hadn't got this disease I would never have known.............. a definitive positive for MND ! (Can't believe I would ever say that, but it is so true!!!).

HUG ME, I'VE GOT MND

TIME HAS PASSED... ! IE .SINCE LAST BLOG.. SORRY

Hi, dear readers

.. have had a busy week since I last Blogged.. sorry if you were waiting for the next thrilling instalment of my life with MND !  But now, here it is.... YEY!!!

Last week-end was so miserable re weather.. and I was heartened that so many friends bothered to contact me, either offering to visit, or simply for a chat as the days were sooo dire.

CAR: 1.I went for a drive with Laura, to get Liver function blood-test done.    2. I drove to the dump to get rid of cardboard.          3.I drove to Tod and met Tom who filled fuel tank... Achievement!!

On Sunday Liza arrived , with my grandchildren, Caterina and Matteo... YEY!! BIG YEY!!!!

Monday, we took a Taxi to Hebden Bridge. Liza could see for herself how difficult this operation was. Getting back into Taxi (Valley Taxi) a prob occurred with kerb, and I said , Do take care. The lovely driver said, You are my mother... what a great kind comment.

We had fish and chips at AJ's . (they will cook in oil). I knew there was a ramp at entrance, but didn't account for the block of wood on door entry. I got in but it did freak me out!
Back home, Matteo had a sleep, and us girls made a Jack-O-Lantern.  Caterina and I devised a song.. " You cant cut a pumpkin in a wheel chair on your knee... "...........................  Sorry no melody here but a great song !!!!!!

Tuesday, Liza took chn to play-park... It poured, 3 mins after they left the house. !!  Then Liza and I spent 5 hrs baking sponge cakes to make the cake for Franks birthday... 8 made but 7 survived.. My hands got weak and smashed one!!!

Liza and chn left on Wed.

So pleased Laura  was coming in to clean..

I was so sad, but it was a great visit.

So these were a few of my favourite things .................

****************************

But then , on Thursday... no planned visitors.. only nails to be done in Tod late afternoon.....

so emptiness struck me.... as I woke up.............

The silence of my house, the silence of my life. The sheer emptiness of my life without dear Meggie.

I have wonderful friends, wonderful support... but actually , I really do feel as if I am existing, not living......... I should shake myself as my friends could not do more for me.........

 I simply cant tell you how much I miss the living presence of my beloved Meggie.
The silence in this house each morning without her, is deafening.

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

I COULD, BUT I WON'T....

I could moan about being exhausted.. but I won't.....!!!!!!

As anyone who has ever moved house, or prepared to move as in my case, you know it's stressful
Add to this buying an adapted car, but unable to procede as license not returned yet... plans for bathroom not sorted,, planning permission now needed for ramp... not being able to get out of house... and having MND...
You might understand why I am tired and sometimes low.

BUT on the bright side, many friends have rallied  round and helped by getting a whole room full of stuff that will go into store to de-clutter the house. ... and today was very special as Janet and Theresa came, sorted and brought a picnic. We had thought we may go out but I simply had no energy to get up steps. So we enjoyed it in style in my garden. When they left I had a 3hr nap on my bed!!!

Picnic in Garden

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

THE COVEN

There are four of us... but we call ourselves the Coven.. like Macbeths witches... but four not three... all of us are single and have various reasons and patterns for coming together... we have all ended up as great supportive friends.Every two months or so we meet up for a meal. It was Marias turn... but her home has so many steps and no downstairs loo ..... I am not able to go there,,, so Liz hosted but Maria cooked, (well Jack, her son, cooked  most of the meal ,and they kindly walked it down to Lizs home. Liz has loo downstairs and flat access. 
It was a lovely evening, good food , lots of bubbles and a Taxi ,,,,,,so no problems of a driver! Yey!!!


What else did I do today? Well I slept till 10:15 when the phone rang. I chose not to answer it, and snoozed for another hour. I then did some painting, on and off all day. Don't think it's a great work, but very cathartic to just apply paint and the brilliant colours,
I'm now catching up on The Voice... How disappointing for half of the people concerned, they will be wiped out either tonight or tomorrow........... how difficult is that?!! 


But life is tough!  I know how tough it is for me , but I hear of so many people who have difficult times... I  feel that when any person has a problem it's 100% their problem.... there aren't gradations of problems . If you have an issue in your life it takes over everything. 
The kind way is to recognise this and respect it. 
To everyone who has a worry, a problem, I send you Hugs.... we all need them.

HUG ME, I'VE GOT  MND