MY BLOG, MY STUDIO

Today i note in the stats, that I have had nearly 2000 hits . Thankyou! People who follow in the USA , do contact me... do you have MND too? 
It's interesting for me to see how many people watch , follow and where they are in the world.
Rebecca also said today, the Blog is good because we can see how you are doing and not bother with multiple phone calls. 
I have lots of calls and welcome them... but please call again if I don't answer as I have so many people to respond to and can't keep track properly of everuone. It's not tthat I don't what to chat but it's that the phone rings at an inconveient moment,  I might not even be able to get to phone before it switches to answer, or I'm resting... hope you understand.
Tomorrow will be a painting day and a visit from Estelle and Elaine... so looking froward to seeing them... and hope they won't mind me being in painting clothes... clean, already set out for tomorrow... but v paint splattered!!


Now including so pictures of my studio (starting with chandelier, which you will either love or hate!)... hope you like the glimpses of the works in progress!

HUG ME, I'VE GOT MND

PAINTING: UPS AND DOWNS

After the stair lift people left yesterday, I had the rest of the afternoon and evening to paint.I use a medium called Liquin , which helps oil to dry more quickly. I did an under-painting and was thrilled with it. Couldn't wait to get back to it today. But today was a challenging day. 
This morning I had a visit from an MND visitor. ...people who have been touched by MND and go to support people like me.It's hard to take in all the effects of MND. I have read medical info but having a person talk about how his wife died was very challenging. 
This afternoon I also had my annual diabetes check-up. All the readings were perfect... except my BP... but no surprise there! 
So when I eventually started to paint, continuing the one I had started, I was not on top form. I think I have spoiled it! I then tried to move it on... but with little success... so it's drying off  and I think it might be a good idea to leave it till Thurs or Fri before I have another shot. It's such a shame when you put effort in and you don't deliver to your own satisfaction.
Ho Hum... Tomorrow a trip to Halifax, some voluntary work, and the usual returns to M&S!!!!

HUG ME, I'VE GOT MND

MUST BUY SUGAR !

Why is it that every work-person who arrives likes multiple sugars in their tea/coffee........ Maybe it's because they work so hard... Andy (tea with 2) and Phil (coffee with 1) arrived on time at 8:30 this morning. Put down dust sheets, made some muddy footprints in kitchen, and set to work on the electrics for my stair-lift. Two hours and two hot drinks later, they were finished... and as Phil bowed out he even got kitchen roll and wiped up the footprints from the kitchen floor. That's what you call efficiency with a smile. Now I have to wait for Saturday when the Chair crew arrive with my blue chair. Until then I have only one hand-rail, so crawling or mountaineering up the stairs is the option... will try not to forget anything and have to do it more than once or twice.
So as more wo/men arrive on Saturday, must remember to get sugar!
If you look at my Blog regularly you will see that Sunday was a day of Blog rest.I was gadding around !... well not really. I joined my friends for a lunch to celebrate Marias birthday. It was great, fabulous friends, good food, plenty of wine on offer ( but we were driving, so not taken) and a luscious cake for pud. I love these get-to-gethers, but it surprises me how exhausting sitting, eating and talking can be! Sat and watched TV for the rest of the evening... a happy day.
And today I'm painting, meal for tonight organised ( well defrosting !) so feeling very positive.

HUG ME,I'VE GOT MND

MARILYN

At 9:00 I saw a txt from a friend.(I  had been asleep in chair for a while). I responded that I was going to bed now,,,,, but. 
Today has not been good.. feeling very weary, but more worryingly , my hands are throbbing and aching. Do hope it's not the start of lack of their use. I will stick to the hope that it's because I have to drag my-self upstairs and rely on my stick to steady me at all times. 


On Monday engineers arrive to put in the electrics for my Stannah stair-lift. I can't quite get my head around the fact that I will be so pleased to have a stair-lift. The speed at which this is progressing is frightening... and I so want to be the statistically (less than 5%)  people who live longer than 3- 5yrs.  But tonight it feels that maybe hoping isn't enough , the progress of the illness marches on and on and on........... so sad.


So anyway, having felt so exhausted  I thought another glass of wine then bed. The wine  perked me up somewhat, and I now find myself watching Marylin at 11:30.


My memories of her go back to my first Girl Guide camp. It was at Horner Water , Minehead , Somerset.. The year  she died. That day my Mum and Dad visited me in camp.
So, two memories: 
My initials are NW and some clown put "IT" after each initial in my Wellies... so I came to be known as Nit Wit Woodman... this nick-name lasted for many, many years. 
My second memory of that camp was that I was constipated. I was told to have a "swig" of syrup of Figs.... Having newly arrived from Miami, I had no idea what "swig" meant. I drank a VERY good draft of the liquid. Then spent many hours tregging back and forth to the "lats" . ( a trench)...
So those are the memories Marilyn evokes. She is so beautiful, 
To this day, "Some Like It Hot", is my favourite all-time, film.
What a beautiful; woman . and yet so damaged. I would live to be as beautiful, sensuous, and lovely as she was... but poor damaged lady... you wouldn't wish those stresses on any-one.


I have an illness, but don't believe I have the fears that, that poor woman lived with. I have much to live for, much still to strive for..... and I will. 


My fear is that when most of my body is in paralysis , you might all reject me. 


It will be frightening, and difficult , for you; but actually more frightening for me. That's why my Blog is called Hug Me etc... 
I so need your help and support now,..... but really, really hope I can rely on you in the future. 


I hope you will be there to Hug Me. and I'll do my very best to hug you back.. Thankyou.

HUG ME , I'VE GOT MND...

66.666666666 % AIN'T BAD

Planned to go to my Art Crit group this morning, start 10:00am.... woke up, but simply couldn't get organised to go out, too weary, legs too stiff and weak... sad, I simply couldn't go . I had planed to take the painting as featured on a  previous day on  Blog ," Both Sides"..
It would have been good to hear the comments of my fellow artists.. but just couldn't manage it..
This afternoon Helen and Dave visited, bringing me some flowers and helping with carrying a few things up stairs. (Stannah coming on Monday to start stair lift, so soon I will be able to travel up in style' with things on my knees... Yey!!!)
I then had a rest and a microwave meal ,before being picked up by Justine to go to Tod Hippodrome to see Nobody's Perfect. A very light play, but brilliantly acted and produced... well done everyone... and  a biG thankyou to Justine for her kind offer of a lift..
Really i do need to be realistic . One activity per day is fine, two could be on the edge... three impossible.
Get a grip Nikki , be sensible!! Enjoy what you can realistically do!!
Hope this will be a lesson learned. The problem is when you used to do 20million things per day, it's hard to realise that 2 things are quite possible, but more, impossible. I get so so tired and then loose my balance and feel so so  bad.. This is a rotten illness!

HUG ME,L I'VE GOT MND

THOUGHTS ON TEETH AND MUM

Just watched BBC One Show... the article (segment) on teeth of children in Northern Ireland.... How desperate a a situation, down to fizzy, sugary drinks mainly. 
My teeth are not good , but in good order. Like many of us aged 60+ we were conceived after the war, when diet had been poor for many of our mothers. 
My mum came from a very poor family of miners. Her dad left when she was very young. Her last memory of him was that he waved as he went down the hill to go to work. He never returned. She always told this story with tears in her eyes. Many years later he died in Canada leaving   Mum and her sister the princely sum of £134 each. Know one knows what happened in the interim, perhaps she had half siblings...? maybe one day when I'm less mobile I'll investigate.
So Back to teeth. Mum did her best to give me milk as a youngster. I know I was breast fed... but at a young age we moved to the Bahamas. Milk then became a real problem. I was given KLIM.. a powdered milk, ( not good) and diluted carnation (really not good).
One memory I have is Mum saying :You will sit there till you drink it.(carnation that is) This meant I was late for school. Dad was the Headteacher. Not wishing to show leniency ( he had been having a difficult time on this island, Cherokee Sound, and , I now know, was on the verge of a nervous breakdown which would change all of our lives for ever. Anyway I would not drink the horrible warm stuff ( no fridge), so he came and dragged me to school ( 100 yds), me screaming and certain I was in the right, then I had the cane... in front of the 300 pupils. Three swipes across the hand. 
I continued to defy the calcium efforts of mum.. she gave me a pill each night, I popped them down the side of my bed... some weeks later... when cleaning, mum found them all. I was not too good at deception!
Just after this I got pneumonia. There was no doctor on the island. Nurse Netty ( not a real nurse) but the one who delivered babies, came to see me. ( Planes to Nassau and a doctor only every 2 weeks)   .. well it was her or a witch doctor. She prescribed breathing Turpentine in hot water. Somehow I survived.
On each visit to Nassau we went to the dentists .. our dentist had an assistant for normal duties ( like now) but an additional assistant whose soul job was to wipe the sweat off his brow!... How vivid are these memories.
So it;s no wonder I have lots of crowns, but they are all mine, despite the terrible start.
Beginnings are important. My eldest daughter who lived in Cambridge till she was 5, fluoride is added to water..... has no fillings, my younger daughter who was 6mths when we left Cambridge , has only 2. Not bad.

HUG ME , I'VE GOT MND

CATCHING UP ON 48HRS.

Lots of bits today:
My feet are cold!
Someone mentioned , I forget whom, that would a helper dog be useful. Tonight it would be great if Meggie were a helper cat. My feet are freezing and my slippers upstairs. I haven't the energy to go up so am siting with a blanket wrapped round them. I did ask Meggie to fetch, but sadly she didn't.I still love her... though she cost me £35 at the vets for her flea and worm drops today.(You'd think she'd repay my generosity by getting my slippers, wouldn't you, but as far as she is concerned drops on her neck are a monthly torture , so I guess we are quite!!) I went into the Mytholmroyd vets... they are computer linked to the Tod vets and so could give me the right stuff... also good parking and flat entry..Good one!
Manners are not what they used to be and Don't judge a book by it's cover!
Yesterday. started early.. well for me.. fasting blood test at 9:30 .. had trouble getting off my armless chair and thus was slow to respond to the call of my name... The vampire was less than sympathetic!! But on the up side, a woman, whom from the looks of her would be less than caring had offered me her seat. Two points here, DO NOT judge a book by it's cover... and why don't parents pop their children on their knee when there is obivious that there are no seats and a wobbly woman (me) arrives. When I was a child it was a matter of principle and pride, that I would sit on my mums knee , or stand, if an older person needed a seat... Manners are not what they used to be!
Home for Breakfast.
I'm enjoying the Frosties ans whole milk left over from the visit of my grandchildren.. A treat as I normally have Weetabix with skim milk... No comparison!
Todmorden Hippodrome.
Steven collected my paintings, loaded them all in his car and took them to the theatre. There was a moment of sadness here.. last June he did the same and there I was helping him... now ,no way I can't  even carry them let alone get up and down thee steps..... very sad. But I'm grateful for his help.
We went to the theatre and between us put up my exhibition.. Is Anyone Perfect...?  It's in the foyer during the run of Nobody's Perfect, which opens tonight.
Bath Chair
Scott then arrived with chair for bath.. It didn't fit! RATS! I was so looking forward to being able to shower and feel safe, at the moment it's very stressful as I wobble whilst standing on the mat.
Time Off
A few hours rest, snooze in chair.
Visitor
7:00 and  Tony arrived complete with bottle of red wine... we has a great chat.. lots of it could be taken as black humour, talking about funeral planning. His sister had a terminal illness and planned her funeral, apparently it was perfect. We swapped notes and had many laughs.Brill
The Blog Works!
Had a call from a friend this morning, she had been reading the blog and knew I was busy during Mon and Tues so rang this morning.. Yey!!
Lunch.
Yum.. met 5 ex colleagues for lunch.. education thoroughly discussed and dissected! These are lovely times, no need to concentrate of what I can or can't do, just good food and wine with friends.
Mounting labels for Exhibition.
This didn't go perfectly as the metal ruler I needed ,is up in the attic.. simply couldn't manage the stairs, no energy.
Scott
Arrived with the bath seat (yesterdays one) it was adjustable, which he hadn't realised!!.. so now I can be not only clean , but confidently clean.. Think of me tomorrow morning, an extra long shower and then a free, painting day!  YEY!!!!
Theatre
Went to the Hippodrome and put up labels. No sales .... yet! fingers crossed.
Jacket Potato
Must be cooked by now ... but just before I end this ..........
Best Bit
Chrissie announced today she and Andy are having a baby, due in September... and s/he waved at them in the scan !!! How lovely an end to today. I am thrilled. I won't know him/her for very long so every moment will be very, extra special, as it is with my two other grandchildren... actually every moment spent with family and friends is so special and has, weight for weight, more value than you could ever imagine.
Love and Hugs to you all... but please..


HUG ME, I'VE GOT MND.

Monday, Monday...

Today has been extremely busy and tomorrow will be too! But the rest of the week should be more calm and give me time for painting.
Today I went to see the "Breathing" consultant.. Had a chest X-ray and was told I would be sent an appointment to have a base-line strength of my muscles test.ie. those muscles that control my breathing. My breathing is ok now, but inevitably  the muscles will deteriorate. 


Generally when you exercise  , muscles get stronger... when you have MND , the more you you use muscles the weaker they get, so that's why fatigue must be avoided.. Chest muscles deteriorate (but aren't yet) , as my leg muscles are doing.


Enough of factual medical bits for now... after all this I went to collect my new reading glasses... bright blue with lime green.. and chose the frame for my varifocals. I have gone back to rimless, the bridge over the nose is pale pink, as are the sides, so a good days work.
I'm shattered. Rebecca was looking out for my return tonight, carried my parcels in and made me a cup of tea... even so it was an hour before I had the energy to take my coat off!!


Mustn't eat or drink any more tonight, the delights of fasting blood test in the morning . Off to the Hippodrome to put up my exhibition: Is Anyone Perfect. It will be in the foyer during the run of the play Nobody's Perfect, which opens on Wednesday, through to Saturday. 


HUG ME, I'VE GOT MND

BOTH SIDES?

I have had an incrediably happy few days with family. 


Thinking about them, and talking about things, has made me realise that perhaps this is the place to write memories.. after all, thoughts of family now, and as was, are so close to me. For example Liza was remembering the table and chairs and where she sat with her grandparents, and how she loved the" bumps" on the chairs. ( The attachments for the leather of the seats).
.... So, in future, I shall write a few of my memories interspersed with my current thoughts.


I have always thought of this Blog as being the palce where I express myself, and that it will be here after me.. ...people may then dip into it after I've gone and I'll be there, all be it in cyber space.. so hope it won't be boring, I have lots to recount.. I feel I've had an interesting life.. and hopefully it will continue for quite a while yet. But we all know it will end sooner than planned. I accept this with grace.


For those of you who feel that baring my soul is inappropriate, I'm sorry, but I have to deal with this illness in my way, and this is my way. (and no I won't be putting in the Frank Sinatra song here... a most unfavoured song of mine!).


But now I am going to include a recent painting. I have an exhibition in May. I want to sell (wicked aren't I ?!) and I know it's the pretty ones that sell. So I'm doing those, but also cathartic ones too.


I feel that the following self portrait ( How I Felt, Dec 2011) tells a lot.  What do you think?

HUG ME, I'VE GOT MND

THANKYOU, NOW I'M 63 !!

I'm having a lovely Birthday... Thankyou all for the brilliant gifts, messages, cards and phone calls.... I'm now off to eat steak and chips and  more champagne, with my family! Yey!!
Breakfast tomorrow will be coffee, croissants and two paracetamol!!
What the hell!!!  I'm up for it!!Just enjoying  the moment!!


HUG ME, I'VE GOT MND

THANKYOU

Thankyou firstly, for all the brill positive helpful comments that keep coming my way... you know who you are!
Thankyou to Liz , Steven and Helen who all asked if they could do anything to help prior to Elizas arrival this morning... Liz got in first, and travelled here to do hoovering and carrying... Wow! What brill friends!
Eliza ,(with ruck-sac and buggy) arrived with Caterina and Matteo at 1:50. How wonderful to see them all. Caterina and I drew lots of pictures and had some stories.
They both played with toys lent by Isaac, Jessica and Iris... and are now asleep in beds courtesy of Iris... wonderful neighbours. 
I am so happy to have them all here, but need to make this short as Caterina and I have a baking date tomorrow (OK this) morning....... a third, choc layer for the cake... how happy and grateful am I to be with my children and grandchildren . ( Chrissie and and Andy arrive tomorrow ).


So good night and a share in my happiness to all...

HUG ME , I'VE GOT MND

BUSY POSITIVE DAY, YEY!

Last night I slept for 8 hours, perfect!
I had a croissant for breakfast, perfect!
Made a list (as always) but prioritized and ,yes, I didn't get quite everything done.. Sad that the beds for my daughter and grandchildren aren't made up.. but simply couldn't carry the gear up to the attic... But this apart, got on well with the list...
At 11:00 Sean and the Stannah-man arrived. Stair lift will be in in about 2 weeks. I chose blue upholstery. The sample colours were apparently not very accurate, so I trusted in the Stannah-man, who seemed quite interested in my paintings, to point to the colour on one of my pictures. I hope his eye is as strong as his compliments re my work!
Short break, then time for nails, Raspberry (a bright pink) this time... and a good natter with Becca and a great cup of tea.
Steve then came and fitted car seats for the little ones, Tesco-man arrived perfectly on time with an order including marshmallows and fish fingers.... yes, for the little ones!
Another sit down then made a few phone calls.
Then cooking. Decided I really did not want a Tesco Birthday cake so made one! YEY!  ... will ice tomorrow and eat Friday.. alongside this I made pasta with lardons in a tomato sauce,
Now sitting with a glass of red wine and will shortly go to bed.
So a busy day , but have ended up feeling positive.. YEY!

Still need you though...

HUG ME, I;VE GOT MND

DON'T WANT TO BE BORING BUT...

I know I'm being boring, but this is a diary of my  thoughts and feelings, so at the risk of you never reading it again, I'll talk about exhaustion.

I didn't know anyone could feel so drained , lacking in any energy . I got up at mid-day, ate, slept on sofa and eventually showered and dressed at 6. 

This is so awful. If I have (well I do have , limited time) then I don't want to waste it being flopped out on sofa. 

How can I  manage ? I have no idea.

Other things are frustrating too. For example: I'm really good at making cakes; normally  I can whip up a Victoria sponge, easily. I need a cake for this weekend, family visiting (yey!) and yet have had to give in, ordering one with my Tesco delivery.

It seems such a simple thing, but even as I write about it tears plop down my face. 

Immediately after diagnosis, my thinking was that this is  a cruel illness.. my thoughts have changed somewhat.. it now feels a sad illness, so unbelievably sad.. and even if you are strong mentally, you simply can't fight this, this total  lack of energy... ...so so sad.

HUG ME I'VE GOT MND

SLEEP,EAT, EAT, SLEEP,EAT/SLEEP..

Sleep... Not enough last night. this illness means I need a good nights sleep and even then, am still slow each morning. Today I had to be in Hx for 10, which means leaving just after 9... this exhausted me..


Eat. My dear dear Meggie has been on a bit of a hunger strike since I moved her feeding tray, with bowls to the kitchen... the reason I moved her bowls was to save the new carpet getting her muddy foot prints on it... but what the heck! after a few weeks of her eating minimally, I moved her food back to the dining-room/studio... she has grazed all day. Well I guess she felt she should eat in the dining room , like everyone else!! What spirit though, cats... especially Meggie .. are amazing. So rest assured , dear readers, my cat is happy and full of tuna fish!


Eat.. I have investigated Wiltshire farm foods,  I need to have a few ready-meals in the freezer for the days when I am too tired to cook. Unfortunately the majority of their meals contain yeast extract, which I must avoid. So, after my voluntary work session, I went to M&S and bought 10 meals for £36! Bargains. I chose special offers and meals that would freeze. M&S foods don't contain yeast extract. So freezer stocked with goodies.


Sleep. After all this I could hardly walk , and unusually had to use my stick in the house. I decided to have a rest in bed. I set the alarm for 1 1/2 hrs later as I had promised to make a few phone calls tonight. When the alarm went off, yes you guessed, I turned it off, rolled over and went to back to sleep for another 2 hours...! So I'm sorry people that  I said I will talk to, especially Liza... I'll ring tomorrow.


Eat/Sleep. So Then I had an M&S meal and now off for more sleep.


This need for rest is so frustrating. It's part of MND. All your muscles are working at mega capacity, thus you get tired. But my stress is that I want to be able live my life whilst I can, and it's so b... infuriating that I am so continuously exhausted. RATS!!!!


SO:


HUG ME, I'VE GOT MND

MAKE-UP.. (I found it!)

As I may have mentioned my dad was an actor, as well as earning a living as a Headteacher. I remember him as Macbeth. In that production there is a little lad who gets killed... Little Macduff.. 

AND     I played the part, (aged 12) .. my love of the play has never waned, I knew it inside out. How strange, Shakespeare had men playing women and yet here I was playing a boy.

Over a holiday, just prior to the production, Dad started growing a beard... he reasoned that his false beard would look correct if it followed the lines of his natural beard... and he was so right... his Macbeth looked amazing.. 

My Dad suffered from depression, that's the genetic link I have to depression... his dad did too .. and who knows how many generations this goes back. I'm fortunate, medication helps me and generally I'm OK , except when I get over-tired, then it's difficult.

When dad was down, I well remember him using the expression "On with the Motley"..He knew he had to try to put on a good face and cope with the world , no-matter how low he was feeling....

He explained to me that there were various meanings of motley, but in a certain opera, the fool had been deserted by his love, and yet had to be jolly, bright and gay... it was his job. So even though the fools’ heart was breaking he had to put on a good face. 

Tonight I Googled the phrase, to find it's actual origin..

"The first recorded use of 'on with the motley' is in Pagliacci, an opera by Ruggiero Leoncavallo, 1892. The text was translated into English in 1893 by F. E. Weatherlby

Thou art not a man, thou’rt but a jester!

On with the motley, and the paint, and the powder!

The people pay thee, and want their laugh, you know!

If Harlequin thy Columbine has stolen, laugh Punchinello! The world will cry, "Bravo!"

What has this to do with me , you may ask? 

Well, when I got up this morning I looked so pale and ill, I decided that from now on I should wear make-up. I will present to you all, and to myself a brighter picture.

I am OK, (even though this is a shit illness) but looking ill doesn't help how I feel people may respond to me, and vice versa... So look forward to a brighter looking Nikki from now on! My alarm set 15 mins earlier.. 

I hope we will all benefit from this positivity.

But don't forget, even if I'm looking bright..

HUG ME, I'VE GOT MND

OH DEAR!!!

I wrote a brill piece for tonight.. you'll have to believe me, 'cause you won't see it tonight!! Something happened on the preview button ( one that I use to prepare these little epics(!)..) and everything turned to a series of old fashioned telegrams. In trying to fix the fault, I eventually realised it was in cyber space, and I'm too tired to re-write it.. so I'll save it for another day.
Hope you've all had a brill Saturday.For me: positive; I had 3 unexpected visitors, YEY!!.. how lovely..; negative side.. painting not going well... Ho Hum , tomorrow is another day and I will get my painting  mojo back! Pleeeeeease


But just in case..


HUG ME, I'VE GOT MND

FRIDAY NIGHT

When I was teaching I loved every day... especially when I was a headteacher... and I can honestly say that every day was wonderful, and never did I get up thinking. I don't want to go to work.... BUT I always loved Friday nights.. The thought of two days lie in... wonderful..and tonight is no exception.
I had a  lovely friend round for dinner.. she is great, stripped a bed, helped me make up a bed and then enjoyed  (I hope!),a meal that was basically  basic.. not posh,, chicken casserole with microwaved rice., easy and yet tasty! ( Thats what friends are about.).
This has been a difficult week but with shining moments, eg when Rebecca came round and Steve and Helen shared multiple bottles of wine with me.. so Ups and downs as you will know from reading my previous blogs...
.... But Yey , it's Friday.

I have had to think about move re not moving ,and accepting all the changes to my lovely home.
On Wednesday I was in crisis re changes, but now a more calm person. Having taken much advice the balance for staying in my home is more positive... Thankyou to all you helpful people. You know who you are. I shall finally decide with my girls when we meet up next weekend.
But a positive for staying is on the cards.

HUG ME,I'VE GOT MND

TWO THINGS TODAY...

Two things have predominated today:


The first I find offensive, a friend(?) rang and said s/he didn't believe I was ill... that I was basically attention seeking... I simply don't know how to respond to this person... finally I ended the call and said : Do please think about what you're saying...
Isn't it strange how people respond? !
I am/was prepared for people to respond differently, I know that people do... but this was unbelievable!
It has hit me that s/he could say this, I didn't ever expect this sort of response. I guess it takes all sorts to make up our world... but really!!! This is beyond my imagination, what a sick thought, that anyone would make up such a serious illness.
The last re-joinder before I ended the call, was that s/he found my blog offensive.. 
Quite simply if you do, then, please, just don't read it!
I understand that it may seem an odd way of coping, but it's my way.... 
I know that some of you found it an interesting and helpful way to keep in touch, and to you, I say thankyou. Keep reading ,and do respond if you you want to.


The second thought in my head today has been around family.
My eldest daughter rang this morning and we chatted for 45mins or more.. how lovely. I am preparing for their visit and must add Frosties to my shopping list.. the little ones love them for breakfast. 
... and whether it's because Sue, (the MND person that I saw yesterday) said that it was important to keep up your calories and gave me carte blanch(e) to enjoy rich food,.... but I've been thinking about Dad playing the piano each morning, singing along.. The song went: My wife is on a diet, and since she's on a diet, home isn't home any more........"

And here it is.... isn't you Tube amazing!!!!

HUG ME, I'VE GOT MND

GEORGE FORMBY

Linda's comment to my first blog this evening made me think...


Every year in my stocking, I got pantomime tickets,( for the Bristol Hippodrome) , from Father Christmas.


I don't remember the year.. I was probably 12, but George Formby was the star. His wife died ,but he next night after her death he performed. When he sang " Leaning on the lamp-post", I noticed my mum was crying. I asked why. She simply said that his "Certain Little Lady", won't ever come by again. 
So tonight I remembered this, and George, and would like to share this with you...

.

HUG ME, I'VE GOT MND

HOKEY COKEY

"You put a (right hand) stair rail in!... You take a (left hand) stair rail out!... that's what it's all about!"... if you are to have an interim stair lift (which won't be my taste necessarily, but will be free)...
Can't believe it! Azimmer frame ( to get up steps at front, to car) and a stair lift all in one week... this is what happens when you're 80+ but not to me! But it's happening.

The visit today was extremely difficult to cope with. All my thoughts on adaptation were either against building regs or will be impossible re space.. the suggestions and changes to my lovely home were/are so difficult to cope with I can't possibly write it all here... so it looks like I will have to move.

My brain says this should be sooner rather than later so that I don't have to adjust to a new place when I'm basically house-bound... my heart says that I don't want to leave my home... my neighbours are so kind, thoughtful and helpful.. I look upon them with so much gratitude and love. I can't believe I am so fortunate as to know them... and whilst I know they will keep in touch, it won't be the same as them being next door.

So, yes,I'm feeling sorry for myself, and I'm trying hard to be positive, but tonight my life seems quite shit! (sorry if you're offended but it's the only appropriate word to use).

The brightest spot of the day was a visit by Sue the MND rep for the area.. she said you have to keep up your calories as your muscles need higher amounts... so Ice Cream... here I come!!!!! YEY!!!!

HUG ME ,I'VE GOT MND

ANXIOUS

Tomorrow Sean and Julia, (Occupational Therapists) , come to visit. They will assess my home, for suitability to adapt and stay here, or move... Of course a bungalow would be suitable... but I live in the Pennines.. there are very few bungalows and those that are available are more expensive than my home.. 

The real value of staying here is threefold: My brilliant , helpful , kind, neighbours: My cat (Meggie is a special friend and so loving. (Those of you without pets won't understand, but believe me she is very important in my life)); and finally, the fact that this is my home..( My colours, my things, my place where I feel safe and comfortable) ... 

I looked at disability . gov re housing...     it seems to be easy if you are in local authority housing or if you receive benefits (So sorry if I sound like Jeremy Kyle!).. I don't fit into either category... 

Why is it that if you have worked, paid taxes..... all your life.... and own your own home,  that you seem to be disadvantaged?  !!! 

Maybe I've got it wrong... perhaps tomorrow will be OK..( I would love to be surprised)....So let's hope tomorrow will be OK..... Let's hope there are grants... 
No-one has explained this.. or seems to have the answers to my questions...So...
Tonight I'm scared.. 
I feel it will not be fair if I am dumped in a place that is not to my liking.,.. I may only live for 3-5 yrs (or actually even less) ...so I am frightened about tomorrow.. and more than ever need your support. 

Thankyou all so much for what you have  given me already, your love and support means so very much.....MND is such a lonely place, I need you all.

HUG ME, I'VE GOT MND.

SWEET DREAMS

I know, it's late! I've had the lovely Sarah and Nick to share dinner with me this evening. A good meal despite nearly every planned recipe going slightly wrong! What was the mint for?? Never mind it tasted good without... whatever it was supposed to be in!!
As ever when I've been active in the evening I need an hour or so of just sitting before I can go to bed and sleep...

I'm ready for bed now and hope I have Sweet dreams... so I thought I'd this Annie Lennox song , the version at the Nobel Peace Prise 2007 ... enjoy !


ps "Everybody needs someone,"  ..so...

HUG ME, I'VE GOT MND

A SPECIAL DAY

Today was special.. didn't feel too bright as I had stayed up too late clearing rooms, BUT.. I started to paint again ! YEY!  It has been difficult as I have to get the knack of the liquin mix and the paste, just right... and things weren't in the right places.. but after a day of splodging ,I feel I am back on the road... so happy.!

Tomorrow will be a busy day as I have Christine visiting for breakfast ,and Sarah and Nick for dinner... might get a  chance to splodge a bit more... ie if I don't hoover... you have been warned Sarah!

Just seen an ad for Hardys Shiraz.. a lovely fizzy red wine on offer at Morrisons... YEY!   Hope the snow goes away so I can get out and buy a bottle or two!! It's a brill wine.

Thankyou to Rebecca for clearing my paths... so welcome.... and thankyou to Steve for considering me and asking if I wanted shopping.. and thankyou to Helen for witnessing my signature on an important document.
And finally thnakyou to Jenny and Linda who respond to my bog most days... you could too.. that would be brill.!.

Jenny sent this today.. so lovely... hope you enjoy it too...

"Is ecologically sound... does not upset the environment"... how brill is that... YEY!     so...

HUG ME, I'VE GOT MND

STILL IN PYJAMAS!

Having had a great nights sleep... (sorry was too exhausted to write last night.). I got up and made a plan:......
I would stay in my PJ's till I finally got studio clear to paint.. a matter of a few hours! Was I ever wrong!! The clock now says 7:35pm and here I still am... two bags of rubbish, two bags for SAMs shop and three bags of paper and still some to go!! 
Ok. Is it daft to stick to a plan?... Well no , I shall be finished and settled by tonight and will have another good sleep.. then...... YEY!.... I will be painting tomorrow... I'm happy to stick to the plan even if I did mis-judge times.. in my breaks I have done lots of email work, and caught up with people....so I'm really happy with my day, ( even if I am still in my PJ's!)


Lots of surprises whilst sorting out... The original log book from Walsden School, date 1877.. to be returned and on my returned pile; Christmas cards, not delivered to Pat and Margaret.. to be delivered.. ;11$ 25c, £1 and 38p .. YEY! I'm richer!!!! 


I also found a card which is now on wall, " Whatever You dream you can do, begin it. Boldness has genius, power and magic in it. Begin it now." Goethe


Wow , how wonderful is that... It almost matches , " Behind every gifted woman, there's often a rather talented cat!"... this has been on my wall for years and is sooooooo true... My dear Meggie can tell me what she wants, explain her displeasure at me moving the site of her food this morning... What a star! A dear friend and companion..
I shall sleep well and happy tonight, trust you will too.

HUG ME, I'VE GO MND

1001

Todays title refers to the number of readers I have had to date... thankyou , each one of you. I hope you find this interesting. For me it's a way of recording my feelings and  events in my life.. it will live long after me... When my paintings sell for thousands!!!!, people will refer back and know me!!! Ho Ho Ho... I wonder if ever I will even hit the £500 mark.. but I'm carrying on painting.
I have recognised that as I have so many visits from friends, and professions , that I need to block out certain days just for me.On these days I can paint..... so it's not that I don't value your contact, but just that I really do need to paint... Hope you'll all understand.
I am exhibiting at the Tod Hippodrome at the end of the month: During the run of Nobody's Perfect. No new paintings, just the people I have painted.. these show a less than perfect person... just take a look at my web-site to see which ones you think I will be exhibiting.. Though tis true to say, I really do need a few hours to update my site.. I shall do soon...
A friend, Linda, sent me this comment on Hugging (see at the end). It so validates what I feel. Hope you all like it, and that Linda won't mind my sharing.
Just before I press paste... when I was young, Mum and I developed a way of ending notes/letters with  XCO... it is code for Kiss, Cuddle, Hug... a good one , don't you think? So XCO to all friends. This is the article from Linda. 


"HUGGING is Good Medicine
It transfers energy and gives the person hugged an emotional lift. You need four hugs a day for survival, eight for maintenance and twelve for growth.Scientists say that hugging is a form of communication because it can say things you don't have words for. And the nicest thing about a hug is that you usually can't give one without getting one." 
YEY!!!!


HUG ME, I'VE GOT MND

EMPATHY

Empathy.. consideration... How can we ever know how to walk in another's shoes? Quite simply , we can't! I can imagine how a person who grieves for the loss of a pet feels...... I've done that myself... my beloved beagle Mina... but how am I to know exactly how that person feels? I can't. I know what I felt, but this won't be exactly the same.. We all experience events differently.
My daughter, Eleanor, died 31 yrs ago. I think of her each day. Some people, in this tragic situation, will have lived through it, not forgotten, but it won't be a big part of their life, as it still is of mine. Am I odd? No. Would another response be odd?..... No...... Just different.
We all have differing responses to events. Some of us ( like me !) always need an injection  for a filling... others simply wouldn't even consider it! We are all separate beings. Each persons  response is  valid.
Sometimes, this is hard to acknowledge. Ok I've got MND, but this makes my problem no more or less than the problems of others. There is no greater magnitude.. a problem , a worry, is just that to an individual.

How do we get through this with grace? I feel the Dickens quote: "Do as thy would be done by", applies here. Lets us all be kind, considerate, and caring towards each-other. It will make for a better, more understanding, considerate world.
We can't possibly walk in the shoes of each person we meet , or hear about. But we can all try to accept that feelings of despair are valid, no matter why they are produced.

HUG ME ,I'VE GOT MND

GORGEOUS GARTER-TOPS

OK!   all will be revealed in my last sentence...... re the weird title.Yes , you'll have to wait, but not long as I'm very tired tonight.

This morning I went for a CBT session.. I will write more about this soon but it was very supportive and empowering as ever... and then we talked of my fears of my death. It's too late to write the detail as I said, but gave me lots of food for thought.

Tesco van  came on time, and the lovely man put my cups and saucers away on the top shelf .I can no longer reach it  without stumbling... he also unpacked the grate of food and put it all on the work-surface. This was very kind , I am very grateful.

Tonight I spent with the Ladies Classics Readers Group... we had a great chat, and actually stuck to the talk about the book for much of the evening!!! The book was "North and South", Elizabeth Gasgull... we all seemed to have enjoyed this book... ( I enjoyed the DVD!!!)

So....... Gorgeous Garter-Tops... 
 I had my nails done this afternoon... and the new colour that I chose is called:  Gorgeous Garter-Tops... its a purple-red... but I guess you didn't guess!!  Who would!!!

So a busy day, with much to think about.... glass of milk and bed.. feeling OK but don't forget:


HUG ME, I'VE GOT MND