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
Saturday, 31 March 2012
Friday, 30 March 2012
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
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
Wednesday, 28 March 2012
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
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
Tuesday, 27 March 2012
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
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, 26 March 2012
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
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
Sunday, 25 March 2012
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
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, 24 March 2012
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
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
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