TAKING IT STEADY.

Today I got dressed at 2:30!  I spoke to my neighbours who, (thankyou all), are happy to be linked via a telephone alert,  if I should fall or feel ill. This will be put in within 2 weeks. The difficult bit is that they will be alerted if I'm on the floor and don't get up within 30 secs... It takes me much longer than 30 secs to get off the floor.. a design fault here???!!!
I went to the gallery and paid for my space. The exhibition is called   " a  MAY zing". Two special events: the official opening is on May 5th, (6-8 pm), and A Tea For MND, fundraiser, on May 13th... a free cup of tea and an exorbitant donation for a cake , please!!! Also a raffle... so if any of you can bake, ( then donate back to eat!!) or have a raffle prize... do contact me.  EVERYBODY WELCOME.


In the post I got the transcript of the interview I did with Jo Black who works for the agency to do with a positive death. It made me sad to read my views, I'm not able to write these down for you now... I'm not that brave . It was very personal. But one sentence stands out... "Sometimes I just want to scream, but there is no-one to scream to....... This disease is very lonely".


Tomorrow I go to the MND conference. I have to be ready to leave at 8:30.... heaven only knows how I'll manage it! But the thought of the next few days of rest , spur me on.

HUG ME, I'VE GOT MND

GET A GRIP, NIKKI!

Hi, Didn't write yesterday as it was sooooo busy. Ending up with a meal and meeting for us three artists, Chris Nichol, Christine Chapman and myself.. who are exhibiting at The Platform Gallery in May. The exhibition is to be called   a May zing... an exhibition for May. 
We sorted poster design and  purchase, purchase of cards/flyers, wine, nibbles, dates, labels.... etc etc...... I was utterly exhausted ,and actually left my guests to wash up and lock up whilst I went to bed!!!   Good friends, yes!


Didn't know if I would have the energy to do my volunteer work today, but managed a 3hr shift!
Tonight I have just finished a lovely meal, (left-over casserole from last night) and am feeling ready for bed. 
I am thrilled that tomorrow is free-ish. On Sunday, I am going to the MND conference at Leeds. Elsa is my "carer" and transport. Thankyou. I'll report back. 
When choosing meals you had to choose veggie, normal, or thickened.. might have said this before but I really struggle with this reality... it's what I will face, but hopefully not too soon.
 And as a reference to the title......I have found that the hand bars to pull myself off the downstairs loo are not working for me any more. I am able to push up, but not pull up. Scott (OT) has provided me with a sort of chair outline that goes around my toilet, so now I can push myself up and off... a bonus not to be stuck I guess.


Some of this is negative and sad , (a lot is), SO I must add a funny to end. Something  which actually happened earlier this week: 
A friend, not known for being a technical person, visited. I asked him to put a box in the back of the car, ( for me to then take to re-cycling when I pass). He was gone ages. I looked out to see what was happening, only to see him struggling to get it over the drivers seat.... he didn't realise the car has 5 doors!! 
I was going to ask him to hang out washing, but , really, life is too too short!!!


HUG ME, I'VE GOT MND

SUNSHINE

Today I woke, and knew it wouldn't be a weepy day. I don't know why I have weepy days, but I guess it's understandable. Thankfully they don't happen very often!
So, went off for BP check ( again!) and thank goodness it was normal!
I did some shopping at Morrisons, got the detergent I had forgotten from Tesco. It did look bizarre rolling about in a large trolley, but I can only go round a supermarket hanging on to a trolley. A basket unbalances me and thus makes walking difficult.
This afternoon John and Ruth, an ex colleague of his whom I last saw 8 yrs ago. Ruth is a great traveller and we talked as places I might go.... ie if the Bahamas trip is too difficult to manage. South Africa seems a possibility.
This evening I'm resting and designing a poster for our exhibition... I downloaded an app for the iPad which is much easier to manipulate than Photoshop. So I have a few examples to show the other artists when they come to dinner tomorrow night. We plan to meet at the opening of an exhibition at The Water Street Gallery at 6.
So a good day to look forward to......

HUG ME , I'VE GOT MND

COOKING IS A MATTER OF...

I've always thought that cooking is a matter of reading and maths.
Reading the instructions ......and maths for measuring and timing.
Timing is critical. You start with an end point for example a roast dinner, (exactly what I fancied tonight). Then with the longest item you subtract how long that would take. You the chart the other items and thus work out an order of work. Everything should then be complete at the time you wish to serve.
So why Have I got cooked potatoes, half cooked cauli. no gravy , pork rested for far too long and 20 mins to go on Yorkshires. ??? Well Yorkshires a cheat,,, bought Aunt Bessies. The pack of 12. I scanned, saw 12 and thought this was the cooking time, ( was actually the number in the packet)!
Might be eating by 9:30 at this rate.
This just crowns off a day to be forgotten.!
Don't feel I've achieved.
Have cried a lot, especially at the thought that I have wasted a precious day.



HUG ME, I'VE GOT MND

MONDAY, LUNGS

Spent this morning at Calderdale Royal having a full lung-function test.
What it actually meant was: I had to get up early (not good, I'm always wobbly in the morning).
Rebecca gave me a lift to Halifax . (Thankyou).
I the huffed and puffed,  and puffed and huffed into various tubes, bags.. sitting and laying down... for 2 3/4 hrs... I was quick it could have been 31/2 hrs!
I focussed on the times I used to dive and breathing came easily from then on. I feel that my ability to use my voice effectively in a crowd ( headteacher/ actor voice!) has helped my breathing.

So why was this done? In fact it didn't matter what today's results were.. it is a base-line. I will be tested every so often to see how my lung function decreases as my muscles get weaker.

Not a happy thought, but good that I start from a position of strength. But it was exhausting, all that breathing to order!!
It's all in a days work with MND!

HUG ME, I'VE GOT MND

NO-ONE TOLD ME!!!!

OK, This is the first time I have ever missed the change of hour day! Was it a state secret? Usually newspapers, TV, Radio or friends, let on!! And it wouldn't have mattered, but I had invited Rebecca Tom and Iris for coffee this morning... so their "elevenses", turned out to be my breakfast!


We sat in the sunshine till Tom had to go off on his travels... Not good to go on a Sunday, but he's back soon.
Then, I guess because I felt a fool re time, I had a weepy hour... 
Then I got on with painting.. Only when I tripped over carpet and fell , did I remember I have MND. Painting is AMAZING! Started 3 that had been in my mind... looking good so far.


Did I mention the thing that lifts my head up and down in bed? It's electric powered , and uses air pressure. It is going back, I feel that fiddling with pillows and cushions is far easier.... and quieter.. it makes a noise, (which if you were polite you would describe as a ships horn blast,.... not so polite and far more accurate,,,,, a fart) !


So tonight I took a video, using Mickey as a model... but for some reason it came out as a still picture. And I don't have the energy to re -film.


Need an early night tonight as I have a full lung function test tomorrow and have to be ready by 9... Rebecca is taking me... the tests last all morning.. so I guess the afternoon will be on the sofa..


Mickey in my Bed! Tube used to raise and lower pillow!!

HUG ME, I'VE GOT MND

SATURDAY

I managed to do a full shift of voluntary work... YEY!   Was good to feel needed.
Steven helped put all the returns ,which I had to take to Next and M&S whilst in Hx, into the car. Thankyou.x
So after duty did M&S.. really fancied a roast dinner, having seen roast beef on Saturday Kitchen.. so I got a roast beef ready meal and some string beans... what a disappointment... like a very poor school dinner. Curries and other casserole meals from M&S are the best. I did get a few.. in the freezer now.. so all set up for next week.
When I got home I sent a txt to Steven to say the fairground was open... Isaac had wanted to have a go on my chair lift. He had many goes , and despite the slow speed, seemed to have fun. The charge is 10p a go, but fees waved for good friends!!!
Tomorrow at 11 Rebecca ,Tom and Iris are coming in for coffee/tea and cake. This should be home=made ( as promised) but no chance at that time in the morning.. too tired to bake now... so M&S will be OK Croissants and Hot Cross Buns... much better for a morning anyway!!! 
The rest of the day will be for painting.


Last evening Elsa popped in and we shared a glass of wine... so lovely to talk to a good friend. We talked about how I was feeling.. and the answer is sad, very very sad.. and that's when I cry... 
I guess it's good to let go sometimes.................

HUG ME, I'VE GOT MND

CAR ASSESSMENT!

Sorry was too, too, tired to Blog last night. I spent the day at an NHS centre having an assessment for an adapted car.
Having left home at 11:30 to get to Ginnys , as she was taking me to Leeds, we eventually arrived home at 6:45... having stopped for much needed, fish and chips!
At the centre I had to do a strange test, crossing out E and F's in lines of upper case letters.. I got almost to the bottom line in the 1min 40sec allowed..... apparently this is good/fine!! I was asked why I wanted a car.. How long I had been driving ( 45yrs).. asked to read a yellow number plate, despite offering to read all... the accessors seemed to be following a script................. sadly,no concession to the person being assessed.... I did feel somewhat processed and dis-empowered.. I had gone thinking that this was my special day.. when professionals would help me to be able to choose an appropriate car!
Well having apparently passing all the tests in room 1...
I moved on to trying cars,
.( Via room 2 . Filled with the most difficult aids that I may have to deal with...... imagine rows of commodes, rows of naff chairs... and a continence room.... TERRIFYING!!) 
You see. you have to choose the adaptations you might need, as to change these in the future costs!  So whilst an automatic with a hoist for a wheelchair,would suit me at the moment (as my right leg is weak, but ok) I had to be assessed on hands only cars.
Well for a start, I have NEVER driven an automatic and despite my reiterating this, a level of competence with automatics, it seemed to be assumed.
The first car I tried had a ball steering mechanism, sited at the bottom of the steering wheel , with a push rod to brake and the same rod , but pull, to accelerate. After 1/2hr after driving round Armley I was shattered! My arms ached. So we then tried a steering ball on the top of the steering wheel, with a push brake but a door handle action to accelerate.  My arms couldn't cope with the steering ball once again. So third go round Leeds, with a steering wheel ring which is the accelerator, and a push brake on a separate rod. This was by far the most comfortable as you have both hands on the steering wheel, except when braking... so this will be written into the assessment. I gather that having got through this, a letter/report will be written to Motability which may reduce the price of the adaptations... but I am still in the dark.
 I now know sort of what I need... but don't know what wheel=chair I can have till the wall and lift are done.. this won't be done, till passed by a ctte... but the type of wheelchair which Calderdale issue is not findable on any web site... may be they are old models(?)  but I won't know till the wall is built and this is on-going to a ctte and the planning...and I can't order a car till I know the dimensions of the wheelchair.......it's sort of like a chickens and eggs position  ..................and what the hell comes first...!
And then, at the end, what car do I choose. ???
Well, today I have decided whatever I get from selling my Micra will not be saved ,but put towards a new car. I had hoped this would be savings, as theoretically ,you get a new car through Motability, but if you need adaptations they do cost...
So BMW here I come... !!!!! probably in my dreams!!!!!!.
.. .............but to answer my first question....................


Why do I need a car.. It's to be independant, to be able to visit my children, anD so many of you who have invited me to visit.............. That's why................ I JUST WANT TO BE ME!


...........and ,you know, it's Bloody Hard!!! but I'll keep going............




HUG ME, I'VE GOT MND

TODAY SHEFFIELD.

The hospital transport service collected me at 10:50. A lovely young driver named Louise. She is the same age as Chrissie , my youngest daughter. We got on really well, chatting for all the journey, which was beset by traffic hitches! Louise remained calm, and we eventually arrived at Sheffield Hallam Hospital at 1:20. Louise collected a wheelchair and took me in style to the Neuro out-patient ward.
I went in straight away to meet Prof Pam Shaw. She is an expert in MND, specializing in ALS.. What a charming, professional woman. We spent over an hour together with her doing extra checks on my eyes , mouth and all the usual ones on my limbs. I seemed to be quite strong, except when it came to legs and my poor left foot just dangled.!.. no power to even get to a right angle to my leg. It looked so sad, dangling there.
After this assessment she said that with info she already had, and with her thorough examination, she was sorry but confident that the diagnosis of MND, ALS was correct.
You may think that this would be a blow. Strangely it wasn't , I expected it but it is, in a funny way, good to know that is confirmed by a leading expert.
The next appointment I have with her is in about 3 weeks time when I will stay overnight, have a full MRI and an intensive electromyographic test.. I think this is to predict a pattern, to help with research. When the results come through, to discuss if I might participate on the research program.
For my part I don't feel it will improve my life chances, but should help those with MND who come after me. I also feel comforted that there will be a dialogue between Prof Shaw and Halifax and my GP... which may well ensure that I get best treatment. But that is in no way to put Halifax and Dr Mahmood down. He has been splendid and spot on with the care and diagnosis... but it does make me feel better to be observed and helped by two neurologists.


I was going to end on a light note by including some of the pics I have done on the iPad... but the Cloud.. the method by which you share info between computer and iPad seems to be lost. Do I find the cloud? or shall I just leave it and love the sunshine like we had tonight!!! 
I'm too tired to do more tonight, have the car assessment experience tomorrow.. so plenty to keep me going!!!. 
The last few days have been brilliant energy wise.. but have been helped by friends contacting me today, thinking of me, wishing me well ( I guess it was a crunch day) .. and the lovely Rebecca who brought in a tray meal, simply fit for a Queen... Thankyou  Rebecca, the meal was so delicious and so so welcome.

HUG ME, I'VE GOT MND

RESEARCH AND THE REST OF MY DAY.

As I write this (because all women can multi task..(.( I used to be able to multi-multi task)).. like many of you do now)... I'm watching Horizon on BBC2, it's fascinating all about fat genes.. The research is fascinating.. maybe it's not all my fault that I'm over-weight!
Had a phone interview with Jo, who is producing an booklet for professionals to deal with the subject of death with people with MND. Apparently booklets on Breathing Issues and  Dementia have already been produced. She was interested in my views and will use some info as quotes, but I will be able to approve inclusion. I shall be invited to the launch in July which is to be held at the House of Commons. 
I've only been there as a guest once before and have very good memories of delicious chocolate cakes! Will I ever be thin!!!!
This morning was spent trying to sort out the weight and size of wheelchairs provided by Calderdale... to help decide which car I need on Thursday. After innumerable phone calls, emails etc I still haven't the info I need.I bet you any money, that all phone calls will be returned tomorrow (despite my saying I need the info NOW, TODAY), as I'm out at Sheffield tomorrow. 
You have to be so , so strong to keep up with all this . Some comes a unexpected help, but if you try to "rock the boat" and go at your  pace, it seems  impossible to do.
Still, I am tenacious and won't be deterred by all this. I spend ages sitting on my computer and on the phone... as I said you have to be strong.And boy am I strong! and happy to keep knocking at doors! But then you think about the people who don't , do they get lost in the system or just accepting.?.. well I guess I now  just have to stand up for myself and ,actually, much as I would wish to think about others, think about my own preservation. 
To end this Blog tonight two things to report. Firstly I have had 3 good days of energy, and it feels LOVELY!. I guess you guessed, the end of last week was simply SHIT. ( Don't be offended, what other word is there). The second brilliant thing was that Chris Cooper, back from New Zealand came to visit. He appeared at his parents door (after 18mths away) , last Sunday... they did know he would be home by Easter, but didn't have a date... so how lovely it was for me to see him too... he is a great young man , and I,m flattered that he bothered to visit me so soon back in this country. I only wish I looked better. Today I'm in painting gear, splattered and generally needing a hair wash and tidying up! Yikes!!
But people value you for who you really are, never mind the weight, never-mind the clothes.. It's what's in us all that matters.


HUG ME, I'VE GOT MND

FIRE.. !

The title refers to my eyes... they feel as if they are on fire!
I have now got up-to date with post and emails... so    HAPPY! YEY!!   But my eyes feel as if they are on fire... hence the piece of music at the end. . In 1967 Rag Week we took Crazy Worlds helmet and held it to ransom... He gave us £5... a lot of money in those days!
Procrastination is truly the thief of all time, and, at last I got the courage to beat the mail. I feel so free , now that I am up to date.... and Wow it feels good!
Tomorrow I have an interview with Joanna , who is doing research into attitudes to death, for those of us with a terminal illness.

I will spend the rest of the day painting. YEY!!
On Wed I go to see Prof Shaw at Sheffield, I did check that hospital transport has been arranged. It has.
On Thursday I go to Leeds ( friend Ginney is taking me), to be assessed for suitable car..
So a busy few days..
So if I take a day off Blogging , I do hope you'll understand... but I'll try not to, even if it's a short comment i do hope to make one.
 

HUG ME. I'VE GOT MND.

CATCHING UP

To start with, an apology to the 57 people who viewed my blog in the last two days , only to find there was no new writing! I have had a quiet few days.. though in this catch-up they might be seen as quiet to you but v busy for me, as my energy levels have been low.
All moans will be in bold.


I am fed up with having very,very cold feet!
Even now with the heating on, a blanket around them, wearing thermal socks and slippers, they are FREEZING!!!!


So back to last Friday.A guy call Peter rang at 8:10! To fix an appointment later in the afternoon to assess me for an indoor motorized wheel chair. The idea being that I save as much energy as possible. BUT: The chair is RED. He didn't even laugh when I said it would clash with my fushia pink carpet! He then promised that it would be with me soon, as people with MND and cancer are given speedy service, to make the best use of the chair. (A double edged sword here I think).
Also on Friday, I had planned to go to see The  Woman in Black, at the Picture House, with Tom. By 6:00 I knew I was too tired to go... even though Tom was driving... we had even planned our treats for the film, me Lemon Drizzle cake, Tom a Magnum.
Exhaustion is so RATS!!!!


Saturday was to be the day of doing the paperwork! and a visit from Matthew and Linda. They did come bringing a lovely bouquet of pink tulips.. they also did a few jobs, taking stuff to the dump and changing a light-bulb. Thanks so much.  
BUT: No Paper-work even attempted!


This morning I woke with what I feared was a migraine, but it went almost as soon as I got out of bed. YEY!! The sunshine was so, so bright on my eyes it had had an effect. So I got up, had breakfast, changed and listened to The Archers. A good start. Then I had to go out for some cash... that's when I realised that I haven't left the house for a whole week! This will have to rectified! 
I have to go into Tod tomorrow and am at Sheffield on Wednesday, so that's two outings at least, but all medical. I need to make sure I go somewhere for FUN!!!
After my trip for money, there was a knock at the door, and a florist with a lovely pink and white bouquet from both of my daughters. How lovely, that made me feel.
 Rebecca Tom and Iris invited me for tea and cake in the garden and gave me a present. I thought it was soap... what a fool (!),..... it was when I read the labels to identify the fragrance, that I saw such and such cocoa solids! Chocolate ! YEY!!! 
Steve popped down with a small bunch of Daffs that he had been given at church, with the message that he had thought of me... How lovely people are.


Spurred on with these feelings of good will I have got through all the piles of paper, ( I swear it was 4" deep.. most to be torn up..... BUT sorted, YEY!!!!!!!!
Tomorrow I shall tackle all the emails I owe.
In between all this positive activity, I have spent some hours trying to sort  few things out on my iPAD... and not succeeded!


So I hope I've caught up, and as a treat have added one of my favourite songs, don't know if it would make it to the Desert Island, but it is on the short list.

HUG ME, I'VE GOT MND

2588

2588 views of my Blog to date! Imagine, that seems like a lots to me. Would love more comments from people, they are so welcome. People in the USA do introduce yourselves.. I await  responses, would be so good to hear from you and why you're reading my Blog. Perhaps you have MND too...?
This is a short Blog today, and earlier than usual.... I'm having a restful day to allow myself the energy for our exhibition planning meeting tonight. I'm also cooking a simple meal.. Southern fried chicken ( courtesy of M&S), jacket potatoes and sald.Dessert, ( a favourite of mine) with home-made choc sauce,..... if I have the energy left to combine the ingredients.
So , as I'm feeling brighter today, I shall sign off with a favourite piece of music, another one Dad used to play frequently.

(  p.s.Thanks for reading).

HUG ME .I'VE GOT MND

100 THINGS TO DO BEFORE YOU DIE.....?

I guess we've all heard of this book ,or similar ones... 100 things to do before you're 50 etc..
My thoughts today have been slightly centred around this theme. 
What the hell are my ambitions before I die. Gloomy thoughts, I know. I keep thinking there are things I should want to do.. but I can't ,for the life of me, think what they are. Yes I want to go to the Bahamas, but I had planned to go there this year ,anyway ..I would love my family to go with me, but I can't afford to take them, and because of their positions with little ones I guess they can't go, anyway. 
Scott visited today. I am having an assessment for:  a phone , which will alert when I fall; I was offered help to get me breakfast ( I declined) ;I am to have an air pillow which will help my position, to help breathing, (if I don't move up and down my muscles become weak and I cough, to get enough air); I am to talk to the wheel chair people; and finally he gave me the contact number for car assessment needs.... all of this to manage... and I heard the Rolling Stones are to have a 50th yr anniversary concert.. I'm just too tired to look at their web site. I'm too tired to have ambitions other than to cope with all I have to cope with... and simply don't have time for extras.How sad is this.
So I guess, when push comes to shove, this illness has taken away my energy, not my spirit, and the reality of all this is that I only seem to have energy to cope with immediate needs. This makes me sad, I feel I was formerly a person who took on challenges, filled every hour and lived life to a million per-cent. Now I'm left coping as best I can.. BUT, I do hope I'm still doing this to a million per-cent of my ability..
..... in which case I guess I'm still a person, and still successful.... though it doesn't feel like it always.
Sorry this has a miserable tone, but it's where I'm at today.
Good things to look forward to,... a meal with friends and planning of exhibition tomorrow .....and film with Tom on Friday.
.......... so need to give myself a shake.. after a sleep all will be well.. these down days aren't every day... but as this is a diary it wouldn't be fair not to include them, though I am loath to do so. 
My aim is to write about the reality of my experience of MND... so here you have it... Hope we all sleep well and wake up to a bright new Friday. X

HUG ME, I'VE GOT MND

iPAD

iPad arrived today. Think it's not yet set-up correctly, as I thought I could transfer photos.. however my email is arriving on it and the picture I made has somehow been saved to the lap top.
I down-loaded the app "Brushes" and had a good fiddle. It's difficult to manage in a delicate way , but I'm sure that will come with practise.
I make the picture which is below... it has come out very like a Matisse.. so apologies to him, but it is my drawing and OK, I feel, for a first go! Hope you like it. I love the bright colours you can achieve.

HUG ME, I'VE GOT MND

COLOUR AND CORRIE!

OK to get the Corrie bit over first... somehow I've got hooked into Coronation Street again. Thought I'd left this addiction behind years ago!! But the murder story is unfolding, and apparently all will be revealed with in the month... so my addiction will end then!


COLOUR: Tony, my friend, and Tutor on the HND came for a cuppa and pizza today. We talked and talked. It was brill. He noticed that my palette has has changed. So we had a long talk about why, and what drives my paintings. It's always been the use of the paint, the feel of the application , as well as colour. I used to use pinks , purples and blues....


But:Thinking back ,my obsession with colour all began some 8 yrs ago. I visited Jo Roche at House of Colour. She analyses which colours suit you. This happens by putting scarves around you. Then as she withdraws them you see your face light up or go dull, according to the colour which predominates.It turns out that I am a "winter". Strong jewel colours suit me. If you look around my house you can see this.
In my wardrobe there were smart clothes, looking wonderful on the hanger, fitting well, but making me look plain dull!  These were mainly the beige and browns, that I thought would suit my complexion..... until  I had the revelation of which actual colours suit me.
This colour palette has continued through to my paintings. Not consciously. But analyzing it, it's true.. These strong colours are what I use. 


Since the diagnosis, I have moved on to include reds, yellows in bright, bright shades. I thought this was because I have had such a shock. Talking about it with Tony , has made me think that probably its a "Carpe Diem", time with paint,  as in other aspects of my life.. 
After all, I  have two choices.. sit ,moan and wait to get weaker... OR.. approach life full-on, get on with it, and enjoy every moment,..... being as strong as possible. This doesn't mean that I do stuff all the time, ( I have to rest)... but even when my body is resting my brain is working. 
Life is  for living... and now  I'm doing it in Technicolour! You'll see the results when/if you come to my exhibition to be held at The Platform Gallery, in May.


HUG ME , I'VE GOT MND

ANOTHER BRILL DAY

Today has been soooo good. Cuppa with Esther, and another cuppa AND cake with Tom , Rebecca and Iris... in the garden. (and Rebeccas Mum and Dad.) How lovely it is that we are having such sunshiny weather! Long may it reign... ie not rain!!!
The rest of the day was spent painting and listening to the radio. The Archers started my day and Top Twenty ended the radio for today... actually didn't even recognise the Number One .. and it's been there for 3 weeks..!!!. never mind I can cope without this knowledge.
I look forward to a good painting week .Tony( art tutor) visiting tomorrow and Ann later in the week. 
Tom and I have a date on Friday to go to see The Woman in Black... he has read the book and is very excited about the film , I thought I was reading the same book, but it seems that  I may be reading the wrong Woman In Black... how funny is this... but the one I'm reading is such fun, a real good thriller!! So I shall enjoy the film anyway.. For me a cuppa and Lemon Drizzle cake, for Tom a cuppa and a Magnum Classic... how cute that we know exactly what we have with each film and yet don't know that we are seeing the right film! (Tom is probably right with his thoughts!!)
Part of my Sunday radio morning is always Desert Island Discs... I keep trying to refine my 8 bits of music... it's impossible... and though this wouldn't be one of mine I think it's worth including. Sooooo remember watching The Perry Como show with Mum and Dad, and the song says a lots about my state of mind... Hope you agree!

HUG ME,  I'VE GOT MND

RESPONSES

It is so good when I get a response to my Blog... from Linda every day, and from Janet most days, (many,many thanks, my lovelies xxx). But, thankyou  everyone else so much for your messages (not necessarily via the Blog), it makes me feel I'm not doing this in a vacuum. However from the stats I do realise that 35-40 people consistently read my Blog each day, nearly 2500 hits so far.,,, Amazing!!
I now have 5 full days with few visitors, and no appointments... YEY!
I love to see people but the thought of 5 days clear, so that I can put on my scruffy clothes and just paint. WONDERFUL!
Today I managed (just) to put pictures on a wall.. to finish drying, and also to clear the floor. It was getting a real challenge to move around without tripping!
I also completed another picture and did the penultimate coat on another.
So a successful day at the studio. I am managing, and really trying to accept my limited available energy . All is well. BUT...I so need your support, it really,really keeps me going.

HUG ME, I'VE GOT MND.

WAR HORSE

Had a good day after 10 1/2hrs sleep. Rest really is the thing that helps manage your spirit and helps you to enjoy the quality time that you have.
I had a good lunch, a cuppa with Rebecca ( she admired,declined a ride on ,the chair lift !)
Then another rest,shower,rest and out to eat at the White Lion Hebden Bridge.( Crispy Duck pancakes followed by ice-cream).
Off to The Picture House.. trying hard to ignore the aggressive geese en route... though walking stick at ready to protect us!!! Not needed, fortunately, though would have been used if necessary! 
The film was War Horse. I had heard that you needed lots of tissues.. actually mine are still in my pocket. Two bits stand out for me. As Joey ( the horse) was born, the relationship between mum and foal was simply lovely, (tissues nearly out at this point). And the part where a frightened Joey runs through barbed wire getting utterly tangled... this was an horrific scene.
Well worth seeing, but you may not need your tissues.

HUG ME , I'VE GOT MND

LOTS OF HUGS TODAY

My first brain-wave (Hug) was that I had breakfast in bed! Orange juice, Crunchy Nut Cornflakes and coffee.... all carried up, on my knee, courtesy of the chair lift! What a thrill!!


Next Hug was that my cover for the ipad arrived... now have cover, stylus and .....soon , very soon..... ipad!!


Next Hug a visit from Wilma and Sarah, who brought cakes and lots of updates on things happening in Hebden Bridge, particularly my ex-pupils... so good to know some are doing so well.


BUT the best Hug was, I rang the DLA to update them on my status re use of bath seat, zimmer etc and was told a decision has been made. I have been awarded the highest rate of mobility. This means that I will be able to have a car through the Motasbility scheme, ie a car which will be suited to my needs. How wonderful this news is. I am ok, just at the moment, for short journeys, but a car assessed for my needs will give me back confidence and freedom to go wherever. Best bit, I will be able to go and visit my girls... though as neither have a downstairs loo, that will be another hurdle to jump... but I will manage somehow! YEY!


Last Hug, Have been painting and feel my mojo is coming back. Below is, a not quite finished ,painting.  I thought I would share it... hope you like it. (Not the best image I know but wait till you see it in real-life the tree, it's wonderful.).

A good day then. Plenty of Hugs.But I'm greedy (!!!), and always need yours!!!!

HUG ME , I'VE GOT MND

JUST THINKING...

Sorry but I felt very weak yesterday, so no Blog. Generally it seems I write on 6 out of 7 days per week. Hope you understand.


So: Just Thinking... You know when you hair is going well, looks fine and you're happy with it. Then, almost overnight, it looks a mess! You ring the hairdresser and by the time you get an appointment.. it actually seems to be OK again.


MND seems to be like that. Most days it's fine, you're in charge and coping... then Bang something seems to happen and you fall apart... I guess the trick is to keep in mind the hair dresser analogy, and know that however black a day is, life is not all black. There are so many white days and many grey days. Understanding life is like this. Not just for people with MND, but for any problem. Things do get brighter because without this hope, and indeed the reality that it is like this, why the hell would we ever go on.
So keep smiling, recognise that sometimes you will have down days, but generally these do pass. 
Love to you.all.

HUG ME, I'VE GOT MND

OK,BETTER, BEST, VERY BEST

OK, well what else can you say.. the chair lift has certainly helped by saving me energy... but now it's suggested that an electric chair will save energy moving round the house. It's indeed a fact,  but a next step... so OK.... but difficult. ( Don't think they even come in a choice of colours!!!).


BETTER: Ginny came over and we had cups of tea, red wine, food, and in between we got all the art stuff down from attic to art store-room ( ie bed 2). also in between I had a nap. Only a good friend would sit and read whilst you had a 30 min sleep. Thankyou,


BEST: Doing an exciting painting, I love it, though not complete yet I'll add it for your perusal. You have to look, then look further....

VERY BEST: Got a card today from Chrissie and Andy... and inside was a scan photo of my third grand-child. Their first. Wow what a wonderful surprise and so very very welcome. Yey!!!!


HUG ME, I'VE GOT MND

WHAT A DECISION TO MAKE

At 10:00 this morning I said goodbye to Pip and Sue. We had had a lovely time together and it was so lovely to see that we still had/have so much in common. So we waved goodbye in a flurry of toast crumbs...( the pave bread from Morrisons makes wonderful toast!)

I then listened to The Archers, drank coffee, and was about to change, when the phone rang.

A friend, who has recently inherited a bungalow, proposed a plan... He and his partner had thought and agreed that they would like to help me. The offer was that the bungalow would be decorated throughout (to my colour preferences.. ie.white), new kitchen and  a bathroom to suit my needs.

Whilst this sounds too good to be true, the problems are: Its not in Tod and I would have to get to know people and I  feel that as I weaken I don't have the energy to establish new relationships; Energy and stress to move, may be energy that I don't ever get back,...... and may speed up my demise; But, most importantly, I feel safe here, loved here, wanted here.

I cant get over how kind ,and out of the blue this offer was. But I have said, no thankyou. A perfectly lovely new home won't replace my cranky house with my fantastic neighbours.

I won't name you, you know who you are. I am so touched and grateful but for the reasons above won't be able to take up this so generous offer.


I feel very hugged tonight.

HUG ME ,I'VE GOT MND

YOU JUST CAN'T MAKE PLANS..!.

First plan : Stannah man due at 9. He arrived at 8:30...I  was out of shower (yey!) , but not quite dressed, and planning to sort washing ,when I heard knocking at door... Rebecca, having seen Stannah van, was making sure I could hear man at door.. (Thankyou Rebecca... I simply don't hear well when I'm in bathroom..)  So, scrabble into rest of  clothes... not easy with my co-ordination... Then down to meet Stannah man- Simon a Man U supporter..(off to Spurs match tomorrow),  pulled a face when i checked that my chair was blue .( Man City... rivals)... but did confirm seat to be blue.

After this slight colour communication  prob we shared info on travel, cups of tea, ate toast, politics, and then coffee.... just after noon the magical moment arrived... my training session and first ride in chair lift. WOW,WOW, WOW.... how good it is to go up with no effort. I got Simon to take this pic.... first time ever in 13 yrs a client has asked him to do this... hope you appreciate his photography as much as I do his professionalism and kindness this morning.

Then Simon left... and I had a few up and down goes! YEY!! It works.

Second Plan: Had a cuppa and off to Morrisons. Thought I had only one or two items but, as you know, you always buy more than is on your list... well I do! ( Don't you?... be honest!). The queues at the checkouts were long. When I got to the checkout person, she asked if I needed a glass of water, I was apparently very pale. I did feel weak. Standing is a problem. I said I would be ok.. she suggested I go straight home and get my husband to make me a hot drink and sit down. Well, no chance there then!   I had entered Morrisons in sunshine, but when leaving it had started to rain, well not rain simply emptying the heavens!!!

Third Plan: Got parked outside house, felt weak, but was encouraged by rainbow that seemed to enter my very house. Three heavy bags, one walking stick, and zimmer frame to take down steps. It was hard work. Talked all the way down to myself to encourage myself to keep going, though back was dipping and I was now in considerable pain. At penultimate step I noted 2 frogs mating mid step. I couldn't go forward without stepping on them or banging them with my bags ,, (by now being dragged along the wet ground)  decided to shoo them off with a bang of my walking stick... No action.. they were well into it.. Desperate by now, and in considerable pain, I nudged them gently with my stick.. no reaction.. did this twice more.. THEN decided, Frogs, It's you or me !!  and I shoved them off the step. They flew a short distance, but landed still stuck together. True love or what!

Got shopping in, unpacked and sat with a roll for lunch ( v Late). THEN:

Sue and Pip arrived at 4:30 . How Brill. We celebrated with champagne, then more champagne.... forget The Earl Grey!!! YEY!! 

Fourth Plan:  I asked Pip to sort out light bulbs that had recently gone... he did the this willingly... 5 mins later the bulb in the kitchen exploded!! Pip left half -way up the step ladders and Sue and I trying to get all the glass up......OK, for Pip, but also for dear Meggies paws.. 

Decided we needed to eat.

Fifth Plan:The first course was cold, Greek type bits.. with  Pitta bread warming..... Potatoes in Microwave,  ready to go in oven to crisp up whilst we ate first leisurely course.... BUT, THEN power went off for an hour.. Sod the potatoes, rats s for the chicken..... ( second course)

BUT. We had a wonderful time eating mega amounts of starters, lovely bread, gallons of red wine, super conversation ..and all by candle-light.... never did, never could, get on to main course

Info:But  I'm not only flying with the thrill of the lift, but also because I've had a great evening with Pip and Sue (Sue and I taught together from 1974. In 1976they  had their baby, Anna...When I went to see them,  I was able to say I was pregnant with my first dear daughter, Eliza.. haven't met up for over 20yrs , but have kept in touch.. so lovely to meet up with special friends...

Sixth  Plan.. nowt.. nothing can go wrong now, no frogs in house, full of lovely (if not as planned) food and wine ,great friendship...and stair lift working. So I'm off up stairs without stress.

HUG ME, I'VE GOT MND

PIED BEAUTY

This title refers to a poem by Gerard  Manley Hopkins. The first line of which is " Glory be to God for dappled things....."
It's all about the value of perfection... or not.... ie things that are not just perfect but are, actually of value. 
My body is no longer perfect but that doesn't mean than my life can't be of value.
It's so hard balancing things... needing a stair lift etc... but still being a "proper " person in my own right.
At the risk of boring you , I have to say I am a normal person when I paint... and yet have to balance this against when (for example), I do go out. 
Today I went to Eden Spa for a massage... really did feel so unsteady and actually have looked at wheel-chairs, on line, tonight. I simply can't believe how fast the progress of this horrible illness is. My legs are now so, so weak... and get weaker daily. I am so pleased that my stair-lift will be here tomorrow morning... imagine, 6 months ago this would have been  totally out of my thoughts, and indeed provoked laughter!


But going back to Pied Beauty, I am graced with the thoughts that there is value in life... OK I have to make adjustments (and they are big ones) but these count for nothing as against the value simply living, and enjoying the life I have. Friends , like you, my readers.... in UK, USA and Canada make me feel valued and give me such support in the face of this sadness. So, Thankyou, each one of you...  all 2050 readers,...... so far. 


HUG ME ,I'VE GOT MND

HOCKNEY AND SUNSHINE

Having watched the David Hockney interview on BBC 2 last Monday I have been tempted to get an ipad.. Tonight I decided what the hell, why wait, life's too short ! So it's on it's way.. March 10th is the due date!!! Yey!!! 
My painting has always been directed by my instinctive feelings for use of colour, and the glory or the  flow of the paint.. for some reason I'm veering away from my usual pinks, blues and purples.. don't know why.. but strong reds, oranges with yellow and green seem to be the way I'm working now. The results are quite stunning I feel.. arresting and yet violent. The mellowness in my work has gone for the moment. Perhaps this is a subconscious reaction to MND. Who knows?


I woke early this morning as sun streamed into my bedroom, hitting my eyes, so that i could no longer dose.  didn't mind, sunshine makes me happy.

HUG ME, I'VE GOT MND