BYE BYE, TO MY DENTISTS...

Today I woke feeling really down and sorry for myself. Sometimes you can feel  like that, can't you?  so low you don't do anything to get out of it.... It can take such strength. But I made myself be proactive and rang an understanding friend for a chat. A felt a little brighter by the end of the conversation. So, having made progress, I rang Eliza, had a bit more of a moan and a chat about her birthday, could hear the little ones chattering happily in the background, and really was motoring towards being much brighter. Two more friends contacted me.I chatted for so long  I had to rush my lunch in order to get to the dentists! 
I had a new experience with the hygienist, you could only call it power washing! A really great way to sort teeth out, and didn't need any of that scraping... (Thankyou new, electric, toothbrush!)  A short wait, and into the dentists for one filling.
I had decided, as I go to the dentists in Burnley, it would be sensible to change to one in Tod. So after 16 yrs of wonderful caring dentistry, I  had to say goodbye. I had hugs off everyone and all their best wishes... it was sad................ but how lovely that we cared and valued each other so much. 
I got home for a cuppa, piece of Christmas cake and Deal or No Deal......... a lovely hour.
Felt even brighter
This evening I went to see the film" The Lady"... The story of  Aung San Suu Kyi. The whole family unit had such principles and stuck with them through terrible separations. This film was panned by The Guardian,I certainly beg to differ.So whilst the content of the film was serious, I had a good evening out.
I'm  about to go to bed,just having some milk and the last of the Roses. There is one last Strawberry Cream that I shall save till last. That will be a good end to the day. 
So now you know Strawberry Creams are my favourites, so save me one ... or..HUG ME,I'VE GOT MND. 

NORTH AND SOUTH

It was sad, as always, to see my family leave this morning, but it really was lovely to see them. They all helped so much... moving furniture and sorting things... brilliant. I now need to get the ex studio organised as my grandchildren visit in 3 weeks for my birthday. I haven't seen them for ages, so it is a very special occasion. I can't wait to see them and my other daughter whom I last saw when I told her the diagnosis news. On my birthday, I plan a trip to Eureka for the little ones and a chocolate cake with lots of candles to blow out...... many, many, times! Apparently they love blowing candles... ............so they are normal then!


Anyway I digress from my title. After Chrissie, Andy and Caroline left I did a few jobs, showered and then sat down to watch the BBC video of North and South. It is the book for the readers group I belong to.... but I rarely manage to read all the book so have decided to watch the videos, if they are available. and WOW! What a wonderful story and lovely production. I may not be able to comment on the literary style of Elizabeth Gaskell but will be able to enthuse on the story. How powerful.. how pertinent.. considering the present  financial situation in our world. It all seems to be a balancing act, fraught with power-politics and perhaps not enough honesty... but honesty and respect win through....  4 hours worth of TV: it was brilliant for every moment and I wanted it never to end. Quite made me forget myself. I was lost in the power of the story.
But do be sure I need not only good stories to escape my thoughts and fears , but also you my friends and readers:
SO HUG ME. I'VE GOT MND ..

MEGA SORT-OUT

Wow! what a lot has been accomplished today, My lovely family have moved a bed up to the old studio, moved canvasses into old spare bedroom, making a good storage area for all my crafts and extra painting gear.

We then started on drawers that hadn't been organised since I moved here in 1994!

What fun this was, so many laughs and great help from them all. Me having to answer questions eg ... "Do you use this?".." How longs once you last used it..."..." What on earth do you need three empty plastic bags for?".. "Doilies" ???? So another bag or rubbish made and nice tidy organised drawers. Yey! BIG thankyou family.

Now Rubbish Collection: Last week I was assessed, yes assessed, to have my bin and recycling on the top step area, so that I could access it myself. (I've been having to ask any visitors to put stuff out, as the steps are too steep to manage with a bag in hand, and I seek to be as independent as I can...)

So: I passed the assessment... and thus every Thursday my recycling should be collected, and every-other Thursday bin rubbish too. So Thursday came, Bin-men came ..and... yes you guessed...DIDN'T collect my recycling.So I called environmental health... Friday came and 3 men turned up to collect, sadly with little grace... And when they should collect the bin on Thursday, I reckon there will be a dispute situation as I have more than the statutory 5 black bags....................... grrrrr

This sort of thing should be so simple... but it seems you have to double and sometimes redouble effort to get stuff done... (Sorry, moan coming up)..

I must say when you feel you have limited time , you want to spend it wisely... OK I've got much more than weeks and months and I don't mean to be morbid, as I'm sure I'll have years BUT I simply don't know how many of these I will be able to get around as well as I do now. So I don't want to waste a moment.

SO HUG ME, I'VE GOT MND

I'VE GOT THE CURE FOR BINGO-WINGS+NEWS.

Ah-ha! So you want to know my secret.... well, just for you, my dear friend, this is it :
You get the lovely Handy-person Team from Calderdale to fix up a second rail to go up the stairs.You are so thrilled, (because you've been crawling up since September) So, you do it too many times....By now you are exhausted and need a cup of tea, or even a G&T (!).
Fortunately you are a positive person and  recognise that every cloud has a silver lining. What you have been doing is not using your legs, but pulling yourself up by your arms, thus giving them a really good work-out... 
So watch this space, I think any Bingo wings will have disappeared very very soon. 
Question to self : Am I in time to enter for the javelin, there's a big event  this summer in London....Or so I'm told !.


AND TWO GOOD THINGS ..(In no particular order as Demot would say...)

• I've got visitors this weekend: Chrissie, Andy and Caroline...Yey!
• My Blue Disabled Parking Badge has arrived!!! Very Yey!

So: soon it will be time to cook a meal... On the menu tonight is Southern Fried Chicken (baked), jacket potatoes, coleslaw and beans... and though it may sound similar to a certain take-away meal, I can assure you that it isn't from the Colonel. Rather from my own fair hands . Well with a little help from my friends at M&S  and my lovely son-in law Andy...... Niece Caroline doesn't know it,but she will be asked to clear the table soon!

Some info re my family: Andy is a really great cook and has made a wonderful curry for tomorrow evening...All this will be washed down with lovely wine I'm sure.

 Washed-down  : a very Enid Blyton phrase. But for  Dick, George, Timmy the dog, et al,  it was always the juice from the tin of fruit.

One last secret: being a good/wonderful/fantastic/amazing, mum-in -law, I bought sausages for breakfast......not for me (I don't like sausages).  Andy loves them... so I bought finest sausages,however, by mistake, bought finest with FIGS... can you imagine!!

I'll write his response tomorrow, if he hasn't left for home!!!

In which case I'll definitely need hugs....

SO HUG ME,I'VE GOT MND

GOOD THINGS.

Today the handyman team came and set up a second rail on my stairway. For the first time since September, I can walk up the stairs, not crawl!... tears were in my eyes, how wonderful this is!.
I also decided to go mad and buy a Kindle, so much lighter to hold than a printed book... Yey!    Ordered a pink leather cover ! What other would I get!! Can't wait for the delivery... almost as anxious as the wait for my disabled parking badge... Please let it be soon! 
I was sent this link, some of you will already have heard it, but it's worth repeating, I love the little pianist from China... who is your favourite?... 
(Soooooo lovely, and it reminds me of assembly at Siddal, as this was a favourite piece of music of the children there.)

So many good things... but I still need your hugs. 
So don't forget:
HUG ME , I'VE GOT MND

M&S CHICKEN AND MUSHROOM RISOTTO

So that was my dinner tonight! Thank goodness for ready meals when you're hungry but too exhausted to cook! This risotto is very tasty,I can recommend it!
But what about the rest of my day?
I set my alarm for 9:00 as Scott, my social worker, was due at 10.... but I turned it off and fell back asleep.. woke at 9:40... Thank goodness I had showered last evening... and, Thank goodness Scott was  a few mins late !... So we had our update on my condition..... | then rang the  handy-persons team, and they will come to do stair-rail tomorrow at 9:00.....(RATS!!) will have to get up early !... Oh! for a day without an alarm... Oh! for a day with no visits from rehab team.. I just want to Paint!!! (But having said that, I do value all their help and support.)
I left for my Sam duty (1-4pm) ....and after 2, or was it 3, sets of traffic lights down the valley, managed to arrive on time. Yey!! Was on duty with the lovely Ruby, who, having been on leave, had only just read about my diagnosis. We had a long chat, in amongst many ,many, callers.... and cups of coffee!... Someone had kindly, left some Thorntons Toffee.... not good to be eating when you have to talk to callers! One person actually said, you have a funny voice, was it the MND or the toffee??... I know, but you decide......!
After the duty I went to The Range.. what a shop! I picked up a soap dispenser for £3.99  (I struggle to squeeze my shower gel, but will find it easy to push shower gel out. so now I have to transfer shower gel for my use).
I also returned a pair of curtains that I had been considering for the studio... now have grey silk ones there... but exchanged for a simple beige pair for the bedroom which will be my art store-room... 
Tom ,Rebecca and Iris came round and put them up (Thankyou).. how nice and clean they look. The ones that had been there were originally, the ones that were in our house in Yarm.. and had been bought  23 yrs ago! So well worth changing... Do look at The Range for textiles.


So I've eaten my M&S Chicken and Mushroom Risotto.... a lovely dinner....


The one downer today, that has made everything difficult , is that I fell against a wall yesterday and banged my right hand. This has made turning thugs, like taps etc etc... and pressure on my vital !,walking stick, very painful.... But I'm coping...
But don't forget:
HUG ME, IVE GOT MND.

FOOT UP, ARRIVES... OH DEAR FOOT NOT UP!!

Today I spent sorting out things... and I'm still not finished... but shattered!
Having spent the morning doing stuff , I decided to shower and change about 2, then wait for Michaela to arrive with the promised Foot Up.
Michaela, arrived on the dot of 4, admired my chandelier,(good taste , Michaela,(I really like her!)). 
Then we fitted the Foot Up. The band to fit round my foot fitted, but he one round my ankle didn't... the packets and sizes were mixed up. RATS!!!
So: I have to wait. I'm sure it will be a help.... when it does arrive.... and  fit!


My anxiety is: the challenge between exhaustion (and thus needing to rest); and the thought that I must do things whilst I can. Resting does not come easy!!
So:
HUG ME I'VE GOT MND

MEGGIE AND ME

First a brief note about me... I slept really well last night so have had a really good day! Yey!!!

But now for Meggie;
Today was the day she had her annual visit to the vets.... (shush.. don't say it too loud!!).
She had her booster and general check up. Bless her, she is exactly the weight as she has been for the last 8 yrs.. how clever! She is now 15.. I was a little concerned that her eyes have appeared a bit milky. Apparently this is a function of old age, not cataracts. Her ability to catch mice will not be impaired ( shame!!!) but if she were human she would be wearing glasses.
So we tried a few on!!

Sorry Meg! I just couldn't resist!!
Meg is wonderful and like you all , she knows to:
HUG ME I'VE GOT MND

0NE MORE DAY

I went to bed at 11 last night, read a bit, but then was awake from 3:30-5:30 with my thigh muscles twitching... a sign the muscles are weakening... My legs are very tottery today.


I know , I should be very happy and grateful, and indeed I am:
Liz came and we sorted out 4 bags of stuff for the Samaritan Shop. She made my bed up, and we did lots of of other moving..
(I need to go to the dump tomorrow.. car loaded.)
This evening I shared lovely meal with Ester and Steve, to celebrate the birthdays of Josh and Lena..


So why do I feel so low? 
Well, when I was getting up to leave tonight, my left thigh locked.....and I screamed out... this has happened before..... but never in company.
It's such a reminder of what is to come.. and so very, very, frightening.


When I came in, I turned on the TV, and One Day More, (BBC4 25yrs of Les Miserables) was playing...
Beautiful song,
I'm sure I have many, many, more than," One Day More":...... but this so struck a chord ,(how many more days do I have?)..


The song  is so poignant,  I have to share it.: wonderful song, and beautiful dreams...

So, thanks for listening to my low feelings, and please:
HUG ME , I'VE GOT MND

ADIEMUS

I love this piece of music. It's from Last Choir Standing. The choreography is naff, but that apart , it's great.
Adiemus , means Draw Near.

So don't forget, draw near and...
HUG ME I'VE GOT MND

THREE IS GOOD!

My mum was a great believer in superstitions. Eg no shoes on the table (people got buried in new shoes apparently). If you give someone something sharp, you cut a friendship, so you have to pay them a penny. But her most odd one was, if you broke something you had to break two more things... usually 2 more jam jars. As these were collected , for jam making, chutney etc..., this always seemed a waste to me.
Anyway last night, I noticed that the glass I had poured some wine into, had a chip( bloomin' dishwasher!). So I chucked it. Didn't think any more about it, but 10mins ago, I went to get a cup, and two mugs fell out. Both broke! So I've done my three... perhaps there was some sense in her superstition!
The fact that the mugs were stacked though is a different story. I can't any longer lift small plates off large plates. I have had to rearrange my cupboard, which has meant stacking mugs. So this MND, has consequences wherever you look in my home. I have had to make so many minor adjustments to keep going and manage. I guess you wouldn't notice, but I do. I have to think things through and recognise my failings. 
It is hard, so hard to admit and to live with. 
BUT I guess if it keeps me going then that's not too bad.
So don't forget:
HUG ME , I'VE GOT MND

CATCHING UP

LAST NIGHT, Sorry I didn't write yesterday but i spent the evening with my friend Elsa. We went for Fish and Chips, which were lovely, hot, tasty and filling.. and the glass of wine made it.
BUT then we went to Hebden Bridge Picture House to see Wuthering Heights. Well the least said the better. I really did not enjoy the film. It was dark, bleak and unpleasant.. and heaven only knows what it had to do with the book. It was long ..... and I slept for half of it!! 
I got home too tired and p.....  off to write Blog.. so sorry!
READING: So I got home, had a glass of milk, and went to bed.. and : for the first time, since the diagnosis of MND.. I read! Yey!! Haven't been able too for weeks. I started the thriller, given to me by Tom , my neighbour, for Christmas. It is a good choice, but I wouldn't expect anything less Tom Palmer is an author... and knows exactly the type of books I enjoy. But what a thrill for me... to actually be turned on by a book again ! I'm getting back to normal!! Can't wait to get to bed for tonight's read!
IN MY BATHROOM: What an error! My bathroom window has the bottom half made of obscured glass. But the top half is clear, no-one can see in, but I can have a view of Cross Stone Church and the hill above. Well I thought no-one could see in.... but ...didn't plan for the scaffolding on next-door but one!
So there was I, drying myself off after my shower, spraying deodorant, powdering my-self with baby powder... and I looked up... there was a man on the roof... with a perfect view of my imperfect body!!
Note to self.. draw blind!!!
YOU NEED TO BE A FIT OCTOPUS:  To put together a wine rack! Life is too short for me to do these tasks.. actually without MND, my life would be too short. Rebecca helped, and Steven finished off... and  I put the wine bottles in place... simples!!!
ELECTRICIAN: Elsa put me in touch with a wonderful electrician, Richard, who put up my amazing chandelier.... it's red, pink, blue with millions of beads! My studio is now nearly finished!!!
THE SWAP: Tonight Steven, with Helen ,I hope, return to put together two CD racks.. and the swap is a mat I bought at a bargain price from LIDL... but it is too wide... so it will go to the Todmorden Hippodrome to be used on a set.. and I await the Ikea delivery of one that fits!
SO ALL'S WELL THAT ENDS WELL:  So a busy 24 hrs, but very productive. I'm so near to painting again, it's giving me quite a rush!! Can't wait to be able to smell the turps and paint very very soon...
But I still need, and value, your help everyone,so thankyou, but don't forget:
HUG ME , I'VE GOT MND

A Song, Special To Me.

Written for Nelson Mandela, I know,but he is so generous, I trust he won't mind my associating with it too.
I feel this song applies to everyone of us, trying to survive in a positive, polite and gracious manner.
I hope you will enjoy sharing with me, these tremendous lyrics. 
With my love to you all, Nikki X

HUG ME, I'VE GOT MND

Started Sh** ,Ended Splendid!

I woke with the most awful sore throat and banging headache... paracetamol and warm Ribena (prescribed by Chrissie), did the trick! Yey!! The carpet people came..(Plug for Classic Carpets Halifax.. always brilliant, helpful and fair prices.)
So now the studio/dining room is nearly complete.. and it looks wonderful!  Yey! Do visit.
So, bad start, but I kept cool and the day has ended with such pleasure.
So...I'm keeping on, keeping positive.. but don't forget:....and thanks to everyone who is doing this.....
HUG ME , I'VE GOT MND... 

NEWSNIGHT...DLA

Just watching Newsnight, about DLA. Having just applied i don't expect to get the care element at the moment... but will do eventually (Stephen Hawking has 3 carers, and it's likely that I will need this type of care in the future) but for now I desperately need the mobility element of DLA.
I will soon need an adapted car if I am to be independent. It's lovely that so many people visit me (Thankyou), but to be "normal" I need to be able to get out and visit people , to go to shops, to go to the pictures/theatre/galleries,... to see my family.
I welcome a medical assessment if it would move forward the time when i get this help. I do need it. Please God I get it.
I sent my form 1 week ago... watch this space.
I have a life terminating illness ie more than 6 mths but it is definite. There is no cure. Most people survive 3-5yrs with ALS,(an exceptional few,  5+yrs.. I hope I'm exceptional! ). But who knows how much of this time will be spent with any kind of movement, and thus freedom. I take one pill, riluzole, that might extend my life by 3-5 mths.The only medication there is.
Eventually all my muscles will freeze and I simply won't be able to move, speak or swallow. So I do need DLA mobility now: to enjoy the freedom of life/movement whilst I can. 
So, yes, some people may be cheating the system, so I'm all for assessment... but please make it soon!....and   .....
HUG ME, I'VE GOT MND

FIXED UP , WITH FOOT UP!

Today I had my first visit from the physiotherapist, Michaela. She was absolutely lovely. We talked about my specific difficulties , had a cuppa, and she took a reading of my breathing, through a machine attached to my finger. The reading was 97.. which is, apparently, fine. She was pleased that I could talk in long sentences without taking breath. and thought that as I breathed from my diaphragm that I was doing well. (The appointment with Dr Thomas re breathing, came through too, mid Feb). 
But my title tonight FOOT-UP, is a Velcro device that fits around my ankle, with an elastic strap attached to my mid foot, which allows me to put my foot forward, which I can do, but then ,will bring my foot back to level. This means I should walk without dragging my foot and thus will be more normal in walking and thus will give less stress to the rest of my body.
Because I was tired, I struggled to get up the all the steps on the way to my car today... (for the first time), so I think I need a hand rail.... but then tried using 2 sticks and this was really ok.. so no handrail needed yet! YEY!
So, long live Velcro!  ......................and don't forget:
HUG ME,I'VE GOT MND.

SILENT SCREAM

I love detective and crime dramas, so , of course, tonight I watched Silent Scream, the Lynda La Plante trilogy on ITV .... and whilst I was watching ,it occurred to me that the title   actually describes how I feel: I'm living a silent scream. 
It's lonely and frightening and so exhausting to keep being positive.
My friends, you are wonderful, and I can't thank you all enough. I didn't know how blessed I was. You help me in so many ways, practically and emotionally, and thus lessen the impact of this terrible illness.          So...
Hug Me, I've Got MND

A QUICK LESSON IN COLOUR MIXING...FROM AN ARTIST!!

You simply wouldn't believe how dim I can be!
Today, I decided to ice my Christmas cake, (yes I know, a bit early!) So to start with the almond paste (yum!). Then regal ice tomorrow adding  almond paste decorations.... stars. 
So there I was with yellow almond paste . I added pink colour to make the beautiful stars for the top. But yellow and pink actually make a weird flesh colour! So I went on to kneed in some red colour, (by now anyone eating this will be hyper for a month!!!- because of E-numbers).  
I looked like I had slashed both wrists and the icing is a vile orange...
So remember:
Yellow and pink makes flesh colour!.
Yellow red and pink make disgusting orange!


And me, an artist, you'd think I knew better!!


Move on to plan B: Tomorrow the white icing, any leftovers to be mixed with pink colour and stars made....
Hope it tastes good after all this.
You could give me your opinion if you call in for a cuppa,..... but don't forget:
HUG ME, I'VE GOT MND,

OFFICIAL TEA MAKER!

So I sat there:  made a few cups of tea; had a few swipes at wiping over wood-work; and one big effort with the roller.....
Yes!    I sat there and supervised! ?? whilst  my dear friends,painted my dining/studio for me. How wonderful are they?
Maria arrived ashen, as her son is a dancer on the cruise liner, line that sunk this morning. Fortunately she found that he was on the sister ship, but she was,  naturally, shaken. Even through all that, she brought picnic ingredients, which we snacked on all day. We laughed, chatted and it was a fun day , Amazing!.

Below,  is a picture of me doing my bit of changing the spout back to the roller on the Paint Pod machine. (This was it's first outing today, and it is to be recommended.

SO HUG ME, I'VE GOT MND.

How Was I To Know

I found this via one of the members of my Blog. It touched me for the words: "I have cherished every hug......."

SO HUG ME ,I'VE GOT MND

WONDER WOMAN ..NO and WONDER WOMAN YES!!!

Today I failed to be Wonder Woman, despite my best intentions!
The alarm was on, allowing time for a shower and breakfast before my cleaner arrived and a man to value the house .( just in case). But I turned alarm off and woke, eventually, just in time to pull clothes on for their arrival. Then I ate, eventually showered and completed a form for the DVLA to say I was OK, at the moment, to drive. By this time it was 12:15... too late to get to Halifax for lunch with colleagues. I decided to post DLA and DVLA letters and go to college where I had been invited to watch an art film. Got to post office, forgot to pay parking ticket ( no blue badge yet... RATS!!!), realising this, I rushed back to car. That completely did it for my already shaky legs. I came home: ham sandwich, apple and crisps, and sat in chair till 4:30.
At 4:30 I got a text from the real WONDER WOMAN! YEY! Liz arrived with bucket, cloths,step ladders ... and whilst I cooked pork chops with mushrooms, apple and garlic cream sauce (served with rice), she washed the walls, ceiling, and woodwork in the dining room. My new studio. Amazing,it looks brilliant already.. and having done this work, shared a meal and a glass of wine... WONDER WOMAN left my home at 8:00. Imagine the speed!! Amazing... Thankyou Liz xxx
AND Tomorrow Wonder Woman1 and Wonder Woman 2 arrive to paint the room.


So, whilst I may not be Wonder Woman, it's so great to know all you helpful people who are. Thank you so much for all the offers of help.  I send Hugs . But don't forget:


HUG ME, I'VE GOT MND

IT'S LATE!

I am trying to write each day , so I guess this will mean I'll have missed Thursday as it's just after midnight.. but tomorrow doesn't start for me till I've slept.. so it's still Thurs for me!!  OK? !!
Why so late, you may ask? Well ,I have finished and printed my DLA form... all 61 paragraphs of it. I then took the opportunity to write an extra note:

"Motor Neurone Disease is a cruel disease. I have been getting weaker and weaker since May 2011. But my actual diagnosis was only in December 2011. That is why I am applying for DLA now.

I realise I will need much care in the future. At the moment I am just about managing as I am spending my own money, on my care needs. But it’s a fact that if I wish to have any energy to do normal things, in the life I have left, then I do need a cleaner etc....

My biggest need is for the mobility aspect of this claim. I am still driving, but I know I would be more secure with an adapted car. I have worn out the carpet on the clutch side of my new car, in 3mths; this must be because of how I have to hold my foot to be able to drive. I do hope I qualify for the higher rate mobility aspect of DLA, as it is a pressing need.

I have been an active person, worked all my life and have done much voluntary work and am a great traveller. This has all changed. It is so sad. I am grieving for my life. Please help to make what activity is left to me, as possible as you can, as I wish to live as normally as I can, until I absolutely can’t.  In terms of terminal illness by your definition of 6 mths, I’m not there. But I may not have too many months of being able to get myself around and do things that are normal to me.

Thankyou for taking the time to read this statement.... ".

I do hope this adds and doesn't mark me out as a smart arse!

My other big news is that the fireplace is finished and the room a bit hoovered. Liz is coming tomorrow and starting to wash down walls and I shall contribute as tea maker and washer of skirting boards, The fireplace does look lovely, an extravagance, but it will make the room so pleasant and happy, to paint in.

I couldn't write yesterday about my visit from the Occupational Therapist.. I was rather upset as she was clearly identifying my future needs.. This includes a through ceiling lift rather than a stair lift, as there will become a time when I can't transfer from wheel chair to stair lift.

 It brought me up sharp, to hear someone else saying this. I had thought it, but it's so different when another speaks it out loud.

The other problem concerned with this is that she felt the changes to my home, might be too expensive to do and thus I might be better off moving.. I am so happy here, the very thought is upsetting. I also feel that I have always lived somewhere pleasant , I don;t want to be dumped just anywhere for the last years of my life. I feel I deserve more than that and the thought of it makes me weep.

Bed now.

SO HUG ME, I'VE GOT MND

HUG ME I'VE GOT MND!!!

I was wondering why I had viewing stats that indicate coming from "dodgy" sites.. But of course anyone searching will find the word HUG and think they're on to a good thing!!!
Ho Ho Ho... how wrong they would be, me going on about my difficulties in managing to stand up , when they are looking for someone laying down!
So who is the joke on! Not me, I feel. But perhaps I am a little too innocent!!!
Will I change the title?  NO!
Why did I pick the title? Well, because I value your friendship dear reader of my Blog.
Friends give hugs. Nothing to do with sex, just hugs to show care and love. 
...............................and I'm so happy to receive them all... thankyou everyone. x

So, Should I start studying the Stars? !

I found this interesting, You Might too. It's from the Independent, yesterday.......

The cream of Britain's scientific establishment will gather in Cambridge tomorrow to celebrate the 70th birthday of the world's best known theoretical physicist. Lord Rees, the Astronomer Royal, will lead the tributes to Stephen Hawking, who for nearly four decades has dominated a field of research that extends from the beginnings of the universe to the end of time.

But some think Professor Hawking should be celebrated as much for surviving almost 50 years, a brilliant mind trapped in a crushed body, with a disease that kills most sufferers in less than three years. Diagnosed with motor neurone disease at 21, he was given two years to live.

He has not merely survived but prospered, in a way few could match. Married twice, the father of three children and the author of A Brief History of Time, which has sold 10 million copies since its publication in 1988, he has also somehow found time to extend and deepen our understanding of the cosmos. At 70 he still leads a jetset lifestyle, crossing continents and giving lectures to promote his enthusiasms.

At a lunch just before Christmas a guest asked what he was currently working on. There was a long pause while he activated the voice synthesiser through which he communicates, before it sputtered into life. "The origins of the universe", came the disembodied monotone, confirming no diminution in the professor's giant ambitions.

Has his brain helped his survival? Probably not. There is no evidence that higher IQ extends the life of people with extreme disabilities. But his positive outlook almost certainly has made a difference. He has written about the shock his diagnosis caused him, as a bored and unpromising PhD student at Cambridge in 1963. But while he was having tests in hospital, he watched a boy die of leukaemia in the bed opposite.

"Whenever I feel inclined to be sorry for myself I remember that boy," he said.

With his engagement to his first wife Jane Wilde he began to make progress. "That changed my life. It gave me something to live for," he wrote.

Most cases of MND progress quickly with swift loss of function. The term covers a group of neurological disorders that affect the motor neurones, the nerves that control the voluntary muscles. First to go are the legs and walking, then the muscles that control the upper body. Speaking becomes more difficult, then swallowing and finally breathing.

More than once he has paid tribute to the NHS, saying he would "not be here without it" having had a "large amount of high-quality treatment". He spoke out most recently in 2009, after the NHS was described as "evil" and "Orwellian" by US Republicans campaigning to stop President Barack Obama's reforms of US healthcare.

Today he has 24-hour care from three nurses who work in shifts. They feed him – a surprisingly violent manoeuvre involving pushing the food down his throat because of his impaired swallowing reflex – and bathe him and attend to all his needs.

The level of care is critical to the survival of people in his condition who are prey to pneumonia and pressure sores unless extensive measures are taken to keep them well. Successful treatment requires extraordinary commitment, attention to detail and a refusal to accept second best.

Some neurologists have questioned his diagnosis, suggesting he may have adult onset spinal muscular atrophy, a disorder similar to MND but which has a much better prognosis and potential for a normal life expectancy.

Most experts however believe his symptoms match classic amyotrophic lateral sclerosis (ALS), the commonest form of MND. Although the normal prognosis is two to five years, one in 20 patients survives 10 years or more.

Brian Dickie, the research director at the MND Association, said he believed there could be something in Professor Hawking's genetic make-up that might explain his survival.

"Just as we know there are a lot of genes that pre-dispose individuals to the disease it is likely there are other disease-modifying genes that cause it to progress much more slowly," he said.

Long survivors, at the extreme end of the statistical tail, are found for many diseases including cancer. Walter Bradley, emeritus professor of neurology at the University of Miami, says he has known five patients with ALS in whom the disease remained stable for years. His longest survivor lived for more than 40 years, continuing to work into his mid-70s.

But he wondered how a world-leading scientist with so brilliant, fertile and quick a mind could have the patience to communicate at the maximum six words a minute to which he is restricted.

"Perhaps only a man who thinks in terms of tens of billions of years of astronomical time and whose mind is adept at contemplating complex equations would have the perseverance to do what he has done. In my opinion Professor Hawking's victory over his disease is no less deserving [than his scientific research] of the award of a Nobel Prize."

Trying to get a normal life.

Trying to be normal and get on with my life. But it's hard. There is always this MND shadow lurking.
The fireplace is nearly finished, Liz will help with decorating, carpet ordered, Fire-stove on its way..... so I should be grateful.... but...
I'm so anxious for it to be  finished soon!!!!!!!  (Rather like when you're in labour and long for that baby to pop out, and it all be over for the moment.)    
I want just get on with being normal . But there it is again, will I ever ever know normal again. My normal will never ever be the same.
On the news, some project is due to be finished in 10yrs time, I won't see it.. strange that... I probably won't even see my grandchildren start secondary school , this makes me so sad.


I so want to paint, I have so much emotion to get out and painting will help I'm sure.
I manage to keep it together most of the time but I'm containing such stress It's like a harbouring  irritation, like ants or rats, instead of blood.


On the positive side I did a normal thing today. I went back to do a shift of voluntary work.It did take courage and effort, but all went well ,and I was so welcomed. That was lovely. 
Thankyou, You know who you are.
...... and always


Hug Me, I've got MND.

Bad Night, Good Day

Fitful night. I keep having this same dream...  you don't have to be Freud to work out the meaning .


 I'm in my house. There's a threat and I have to get out.
 No matter how I try, the exits are blocked. All windows have bars, even the locks are super-glued. 
It's so frightening, and I wake in a cold sweat.


So I got out of bed at 7, had a cuppa and then snoozed happily for a few hours.


Today I have cooked casseroles for the freezer, so no problems with meals when I'm too tired to cook from first principles.YeY!!


Sue from St Neots rang, (we haven't spoken for years but always write at Christmas),Elsa and her friend Claire popped in and carried a few heavy for me, Rebecca came in for a cuppa, and Liz plans to help ( do!) decorating of new studio....


WOW how lucky I am to have such lovely friends.. But I need you all, so thankyou.......... and don't forget, touch is so important, so


Hug Me , I've got MND

SO Tired

I just can't believe that I've got MND... but I guess that I'm too tired to attempt the stairs and go to bed is a clue. 
I went to Hx today and bought wonderful carpet remnant for new studio... £200 fitted! Yey!! But doing just this exhausted me... from 5-9 I slept in chair... I knew I needed to eat.. but had no energy to make meal... eventually cooked pasta and mixed it with olive and tomato pesto, from M&S ... must buy a few ready meals for such occasions... or cook casseroles, when I do have energy, and freeze so I always have a meal... 


So I know it's late, !:30, but I still don't have the energy to climb the stairs.. maybe I'll snooze in chair for a while then try to do it.
So Please...




Hug Me, I've got MND

You crazy, lovely, wonderful, strong woman

What a day!
The above title was a message to me from my friend Carol. 
How blessed am I. 
Today Mary promised to come and help with DLA form (she is a medical professional) , I talked to both my daughters, my cousin (Sheila) sent me a text of love, another card came with a message that I had been the saviour of Riverside (a pride of mine), Ginny came for a cuppa, Elsa and I talked and she will come for a cuppa tomorrow and my dear neighbours, Rebecca, Tom and Iris gave me flowers with three pink roses.


Today is the anniversary of the death of my daughter Eleanor Rose. She would have been 31 on Dec 27 2011. 


Whilst I was in labour, I was very hot, so the midwife opened the window. There, outside, was a single pink rose..So pink roses are the symbol, for me, of my daughters,,, I love them all. 


Eleanor Rose RIP, love mummy x


So Thankyou all for a really positive day, with your wonderful  help, but don't forget:


Hug Me, I've Got MND

You , crazy, ,

HUGS !

How lovely is this, sent to me by one of my followers of this blog,  Thankyou. x
Hug Me, Ive Got MND

SERIOUS.. Euthanasia

OK, as I write the issue of early(?) death for those of us with a life-limiting illness is on the news.
So what are my views? Well in the 12 days when I was 99% sure I had MND, but hadn't seen the neurologist, I did lots of thinking, and lots of research.
The single ticket to Switzerland, I can tell you now, I won't be buying. 
You have to be resident in Switzerland for four days. Imagine how stressful that would be... too much for me. Additionally you have to be able to swallow the medicine. For me this would meant ending my life before I need to go. MND means that I will have difficulty swallowing and may well have to decide on a feeding tube. (PEG)
At the moment, my thoughts are, that I will have a feeding tube and want to be around as long as I can communicate... though this may well be a computerised system.... who knows how?   But when I can't any longer say:


Hug Me, I've Got MND


then maybe it will be time to go, quietly and peacefully.

Tuning is a Probe..... !

Ok You say, what is she on about?... I thought her brain wasn't supposed to be affected!

(or is it effected, never was good at spelling, too late to bother now!)

Anyway back to "Tuning is a Probe".. well it would be a probe for you too after filling in the 40+page to see if you qualify for DLA. 

Tuning is a probe, was a funny error I made, I meant to say "Turning is a problem".. 

Turning is a probe, does sound more interesting though, however I doubt that it would get me the DLA!

So don't forget,

Hug Me, I've got MND !

A non-visit and a visit...
This morning Jonathan was supposed to start fireplace... but his van broke down!. I'm so disappointed , I was so excited about today. But these things happen and he will be here tomorrow.

BUT, the man, Scott , came from the rehab team. It seems he acts as a sort of hub for my needs. He had appointments for me with the Speech Therapy team and with Physio and will also contact the team who will see about adaptations to my home. (I thought that's what he was going to do.. but his job is to co-ordinate). So after I come back from Christina's I have multiple appointments. 


Anyway how am I today? Well I'm going back to  Slimming World tonight.But I don't feel I will follow the plan to the letter and thus loose weight, as I will naturally loose weight anyway, but it is a healthy eating plan so I shall try to follow, but if I want to eat a piece of cake or a Mars bar.. then sod it ! I will!! 


Liza sent me a lovely picture of Caterina as a butterfly and Chrissie and Andy just rang... so all is well.


But don't forget:


Hug Me I've got MND.

Thank goodness today we are back to normal!  The 6 o'clock news is at 6 and alls well with the world.

The last few weeks have been so difficult..On Dec 2nd  Iwas almost  sure I had MND, then on dec 14th I was sure.
Then Christmas and the world seemed to halt... but not for  me.. I so want to get on with my life. And it's now happening.

Two dear friends have helped strip my dinning room and tomorrow Jonathan comes to seek out the fire place behind the blocked  wall.                      What will he find?                Who knows... exciting.!

I have so wanted to dig this out and am finally going for it.. The dinning room will be my new studio

. I can't wait to get going with paint again and then some kind of normality will return.

It's strange this, some people faced with my illness may want to  go on dream trips , some give in, but for me at the moment iI just want to be back to painting.Through my art I feel I can express my feelings and also give people pleasure.

 I am booked for an exhibition at the Platform Gallery in May, and feel this will not be my last exhibition.YEY!!

I am positive that being positive will keep me going... that, and the help of friends...

So Hug Me , I've got MND.   x

To begin at the Beginning....

I was a headteacher, but had to retire in 2004 with ME and depression. After getting the right medication and doing a lot of hard work on building up my strength, I felt I was better.
In fact I was so well that in 2008 I began an HND in Fine Art. I had found my niche. I was/am a painter and I love it.
In May, as we got our work together for assessment, I started to limp... I thought I was working too hard and thus the ME was coming back.
In June I went to Glastonbury, mud and extra walking really caused problems... but I thought rest would make it all better.
In July I was sufficiently concerned to go to my GP. She suggested that as i was flat-footed a trip to the podiatrist would help. I had inserts in my shoes... comfy but I was still limping...
To cut a long story short, I eventually went to a neurologist, has an MRI and the electro nerve tests...
As my GP had also ordered the nerve tests she received the results, so it was that late on Dec 2nd I visited my GP for a routine blood test update , only to be told that I had MND, ALS.. but that it wasn't her field.
On the Monday I rang the neurologists secretary and had an appointment with him on Dec 14th. 
The twelve days prior to seeing the neurologist were hell. I decided not to tell people until the diagnosis was absolute..
And on Dec 14th it was confirmed.. MND.


So why the title Hug me , I've got MND..... well I need hugs, and I feel I will need hugs even more as I face the future.
So friends, Hug Me, I've Got MND.