Once upon a time there was a Princess called Nikki. Sadly she had MND and was confined to a wheelchair.
But she was most fortunate in that a man, whose children she had taught many years ago, offered to transform a bungalow in which she could live (by paying some rent). Part of the plan was to make the kitchen accessible, so that she could cook and feed herself. He did such tremendous work.. the sink had no cupboards underneath so she could drive under and wash up. The oven was low and even had a special work surface so heavy items could be placed carefully and safely. The hob was really special, it went up and down. It was down for when Nikki cooked and up for when friends cooked for her. It operated by a switch. The switch had a sensor which stopped the hob going too low and the designers said it would automatically stop at the work surface height.
Nikki found this so helpful. She could cook from her wheel chair , stirring and checking each pot and pan.
Well this morning when Princess Nikki woke. She was so bright. She had had a wonderful night of perfect sleep.
9:30 she arose , made coffee, got cereal and waited for Princess Laura... her PA.
Back at her castle inTod, Princess Laura had awoken and found her carriage had a flat tyre... she had to organise the safety of her family getting to school , fix the carriage and arrived at Nikkis home at 10:45.
Nikki greeted her with happiness. Her first task was to shut the loft, as the wind had blown it slightly open. Whilst this happened Nikki entered the bathing room. BUT she heard an amazing Crash!! Shout!! and Plea for help from Princess Laura.
Fearing that the loft ladder had fallen on the Princess , Nikki , as quickly as is possible in a wheel chair (facing the toilet) .. turned and investigated.
What a sight met her eyes! the Princess L was standing covered in glistening glass.
The hob had been moved to the up position whilst she was making a cup of coffee for them both.. (the usual start to their time together). The hob had gone up, then up more... crashing into the glass backdrop to the splashback.
The Princess Laura was so shocked... glass had hit her on her chest, and then she realised that had Princesss Nikki moved the Hob, then the glass would have hit her in the face.
Princess Nikki rang Lord R. He was shocked and frightened at the disaster that could have happened... he rushed to the scene, leaving the home he was painting for a cook who serves a pop-group on tour. (Sadly not the Rolling Stones !).
Princess L swept and Princess N attended the bathroom.
The two princesses then sat with cups of coffee. Meanwhile an emotional Lord R surveyed the damage.. and podiatrist Sarah arrived. She made special wedges to try to keep Princess N's toes somewhat straight. She left with a hug and a promise of a trial of a special sock and of rubber bands that might be hooked over the toes to give them a stretch as the Princess N could not longer reach her toes to stretch them and they caused tremendous discomfort.
BUT THEN
AHHH! Princess L exclaimed.. there is water seeping from the washing machine!! Lord R and Princess L investigated... it was found that the soap fill was blocked. They worked diligently..
Meanwhile the daughter of Princess Nikki, the princess Eliza rang.. Sadly there was no time to talk but they decided to chat later.
Simultaneously the physio M arrived, with a gift of a bed support... Princess Nikki has trouble turning in bed. Physio M fixed this on to the bed bed but was horrified that the bed was on casters... however Nikki ensured that the bed had never moved...
Well then she tried the new equipment and the bed shot across the floor. It was decided that there was a need for caster cups.. but as these were not provided by the health care people .Princess N would need to pay more golden coins... Princess N has few remaining coins but cant risk falling off the bed.
Princess N said farewell to physio M and returned to the kitchen where she found Lord R on his knees. She enquired as to whether he was praying or thinking. His simple response was , the hob is about to fall off the wall.. Im holding it in place, a joiner is on his way.
A flash of problem solving... in her chariot N retrieved a stool which stood on it's end should support the hob, thus releasing Lord R... but it was 2" too short.... quick as a flash, she found a Bible.. the exact height required.
The hob supported, Lord R was free to phone Howdens who designed the kitchen and too complain and explain the disastrous happenings.
This episode was resolved by an agreement between Lord R, the joiner and a Howdens rep meeting chez the Princess at 8:30 in the morn.
BUT... At this time N would be getting prepared for a visit to Hx Hosp to talk with/to a CBT psycologist, C.... what a lot to talk about... she had thought the agenda might be about the end of life thoughts of herself... but she now realises nothing as trivial can be on the agenda... it might well be about life as the Princess finds it.
So the visitors left and G arrived.. It was good as N was soooo in need of a cup of tea, ( and actually a cigarette... but G cant cope with N smoking.. so she didnt!!)... G left and Princess L returned to check on washing machine........ They had a cigarette ! YEY!!!
5:20 N called her baby Princess Eliza who gave her permission to have an early G n T... Princess N normally waits till 6:00.... N was very grateful that her son in law A had prepared stew so she will be able to eat with micro wave...
The day is not yet over. Princess N had hoped to have calm, ie prior to Thursday which she knows will be busy. She had hoped to paint... but had not managed to do this. She hopes for a peaceful day soon.... as she yearns to make pictures...
HUG ME,I'VE GOT MND
I guess this is a diary of my thoughts, findings and feelings since being dianosed with MND in December 2011.
Wednesday, 28 November 2012
Tuesday, 27 November 2012
MUSIC...SORRY... and EXPLANATION
On my Blog yesterday, I included a piece of my favourite music... I hadn't realised the vid was from a home movie and was of poor quality. On my laptop I cant play clips prior to publishing... but when I checked back I found my error... so sorry. Here is a good version, not by the Welsh Choir as I had wanted, but the music is as good. And I love the pink ties!!!!
Tonight on BBC1 after the news on the program Imagine , there should be a program of interest. Its about the meaning of music to people. I shall be watching... and You ??
So wish I had got a ticket for the Stones concert ! I saw them at Sheffield about 5 yrs ago... AMAZING !!!
One of my favourite Stones numbers is Hey You Get Off My Cloud..... It brings back happy memories of waking after a party with an aching right arm/shoulder having danced/sung this number, endlessly !!!
HUG ME, I'VE GOT MND
Monday, 26 November 2012
MUSIC
My dear friend, cleaner, PA: Laura, said on Monday... What music do you like Nikki? I admitted to having a small CD collection... but that all the music I had was special.
HUG ME, I'VE GOT MND
I also admitted to having not listened to music for nearly a year.
Why???? I thought.
So I put on the cd that was located in my Bose.
Elbow.
I cried.
I wept.
Music brings forward such emotion.. so many memories ..like the Elbow performance at Glastonbury 2011.............
thoughts ....... will I make Glasto 2013 ?????????????
I so want to .......
Elbow.
I cried.
I wept.
Music brings forward such emotion.. so many memories ..like the Elbow performance at Glastonbury 2011.............
thoughts ....... will I make Glasto 2013 ?????????????
I so want to .......
So Music........ enjoy!
I shall from today.... It may make me cry....... but t's such a good way to let the pain go........ so........
I shall from today.... It may make me cry....... but t's such a good way to let the pain go........ so........
This track isn't Elbow It's Adeamus, "Draw Near"..... a bright , celebratory piece....... enjoy....... I feel so happy as I hear it, do enjoy too.
And my promise, to myself , to allow music back into my life..... and even if tears fall, that will be OK. Music is at the soul........ hope you are moved too.............
HUG ME, I'VE GOT MND
WORDS
Words are tricky !
I had a visit recently from a dear friend who though I didn't care/ was being standoffish as I had answered txts saying :No Im not OK to visit at the moment... I truly wasn't Ok..
I was waiting for medical visit or was so exhausted I simply couldn't see the friend.. no matter how much I wished to.
I apologised for seemingly being unfriendly and somewhat ungrateful... but it is hard... sometimes perhaps, I don't communicate well?
So today: I'm in the process of getting my Christmas cards printed... But wording issues... I have to have 100 min order.. so therefore the card needs to be non date linked... thus may be used another year.
OK I can get over that. But my usual wording is something like, "Wishing you happiness, health and peace for the coming year "..........
But some of my cards will be sent to persons who may not have health next year, and they know that.
I don't wish to offend.
So I think I have settled on , "Love , Peace and Happiness".... what do you think ? Do message back.,,,,,,,,,,,,,,, AND
HUG ME, I'VE GOT MND
I had a visit recently from a dear friend who though I didn't care/ was being standoffish as I had answered txts saying :No Im not OK to visit at the moment... I truly wasn't Ok..
I was waiting for medical visit or was so exhausted I simply couldn't see the friend.. no matter how much I wished to.
I apologised for seemingly being unfriendly and somewhat ungrateful... but it is hard... sometimes perhaps, I don't communicate well?
So today: I'm in the process of getting my Christmas cards printed... But wording issues... I have to have 100 min order.. so therefore the card needs to be non date linked... thus may be used another year.
OK I can get over that. But my usual wording is something like, "Wishing you happiness, health and peace for the coming year "..........
But some of my cards will be sent to persons who may not have health next year, and they know that.
I don't wish to offend.
So I think I have settled on , "Love , Peace and Happiness".... what do you think ? Do message back.,,,,,,,,,,,,,,, AND
HUG ME, I'VE GOT MND
Sunday, 25 November 2012
15000 +
I looked at the Stats just now and see that I have had over 15000 readers. I hope that from you people maybe you have some comfort that people do cope , some understanding or even laughs ,about MND.
And all that info makes it difficult to write what I had planned.
I've had an up and down day. I have a pain in my neck from simply not having my body properly supported in a chair... I've put Ibuprofen gel on it and taken paracetamol.... but it hasn't taken the ache away. I think a good sleep might do.
I started the day late, but then got on very positively, doing paperwork. All this stopped with two phone calls... a good chat with J, and then Liza rang and said she would be visiting the weekend after next... and with my dear little grandchildren. I had planned to decorate the Christmas tree on Dec 1st but will put it off for a week, and enjoy doing it with them. YEY!! (note to self , buy chocolate decorations for them.)
After all this, it was time for a sandwich. As I ate it, I tuned into CH5 , a film.... A Christmas film.... I really mustn't watch these, I realise they are smultchie but none-the-less they do bring out emotion in me. I simply cried at some bits. Then tried to get a grip but depression descended... I was on the verge of ringing the Crisis team... and I don't know what helped me to turn the corner, but my head got out of the despondent state and I have coped.... not v strong, but not as low.
So: My Music tonight is Snow Patrol, Light Up, Light Up (Interesting video too).
And all that info makes it difficult to write what I had planned.
I've had an up and down day. I have a pain in my neck from simply not having my body properly supported in a chair... I've put Ibuprofen gel on it and taken paracetamol.... but it hasn't taken the ache away. I think a good sleep might do.
I started the day late, but then got on very positively, doing paperwork. All this stopped with two phone calls... a good chat with J, and then Liza rang and said she would be visiting the weekend after next... and with my dear little grandchildren. I had planned to decorate the Christmas tree on Dec 1st but will put it off for a week, and enjoy doing it with them. YEY!! (note to self , buy chocolate decorations for them.)
After all this, it was time for a sandwich. As I ate it, I tuned into CH5 , a film.... A Christmas film.... I really mustn't watch these, I realise they are smultchie but none-the-less they do bring out emotion in me. I simply cried at some bits. Then tried to get a grip but depression descended... I was on the verge of ringing the Crisis team... and I don't know what helped me to turn the corner, but my head got out of the despondent state and I have coped.... not v strong, but not as low.
So: My Music tonight is Snow Patrol, Light Up, Light Up (Interesting video too).
HUG ME, I'VE GOT MND.
Saturday, 24 November 2012
NORMALITY .... ?
I really struggle with "Normality".
Part simply just craves normality. I don't have a "wish list", even though I know many terminally ill people do. ............... AND I sometimes feel as if I should have a wish-list............ BUT I simply can't seem to go there.
What I want, what I crave, is to be normal...... But I have to accept that my normal isn't now, what my normal used to be..
I used to be so very active, as a headteacher, a mum,a partner/lover, a person who did voluntary work, a person who loved to go out, even at the end of a tiring week...........
But now : my normal is going out occasionally, (because I am generally so weak and exhausted), having friends visit, and asking them to put on my bed-side light , filling the kettle,......because these are difficult...(I have to balance)...... my normal is thinking, what care do I need ? and what can I afford... (not enough!)
My normal is living with MND and knowing I'm getting weaker day by day, my normal is fighting this shit disease and trying to be normal.
And , for tonight, a Saturday night, my normal is XFactor, Pizza and red wine..... So that's normal, normal!!! YEY !!!!
HUG ME, I'VE GOT MND
Part simply just craves normality. I don't have a "wish list", even though I know many terminally ill people do. ............... AND I sometimes feel as if I should have a wish-list............ BUT I simply can't seem to go there.
What I want, what I crave, is to be normal...... But I have to accept that my normal isn't now, what my normal used to be..
I used to be so very active, as a headteacher, a mum,a partner/lover, a person who did voluntary work, a person who loved to go out, even at the end of a tiring week...........
But now : my normal is going out occasionally, (because I am generally so weak and exhausted), having friends visit, and asking them to put on my bed-side light , filling the kettle,......because these are difficult...(I have to balance)...... my normal is thinking, what care do I need ? and what can I afford... (not enough!)
My normal is living with MND and knowing I'm getting weaker day by day, my normal is fighting this shit disease and trying to be normal.
And , for tonight, a Saturday night, my normal is XFactor, Pizza and red wine..... So that's normal, normal!!! YEY !!!!
HUG ME, I'VE GOT MND
Thursday, 22 November 2012
SOOOOOOO..... FUNNY !
As I have said, many times before... I have amazin friends.... but theyall operate in their own way.
For example: K has said she will organise rota to be with me whilst I die, K brought microwaveable slippers and bed socks as she knew I get get v cold feet, L has cooked a brill breakfast, E invites me to events and takes me, J has painted a portrait, G will shop and take me places, V meets me for lunch at Hosp and comes to appointments, B has been beside me when I have been sooo stressed, S has shortened curtains, K has put up paintings, L is an amazing PA doing so much, S brought me a cuppa in bed, E helped bake, E txts each day, ............people phone and visit....... and many many more pals , too many to mention,............. do so very much................
But today H visited and I asked him to load cups in dish-washer. From the pic below you will realise he hasn't ever done this before..... Bless for doing it H... I'm not laughing at you, I value your friendship too much.... but you must admit these cups would never get clean............. and next time we'll simply have a cuppa and a chat! OK ?
And I am so grateful and honoured.
HUG ME , I'VE GOT MND
For example: K has said she will organise rota to be with me whilst I die, K brought microwaveable slippers and bed socks as she knew I get get v cold feet, L has cooked a brill breakfast, E invites me to events and takes me, J has painted a portrait, G will shop and take me places, V meets me for lunch at Hosp and comes to appointments, B has been beside me when I have been sooo stressed, S has shortened curtains, K has put up paintings, L is an amazing PA doing so much, S brought me a cuppa in bed, E helped bake, E txts each day, ............people phone and visit....... and many many more pals , too many to mention,............. do so very much................
But today H visited and I asked him to load cups in dish-washer. From the pic below you will realise he hasn't ever done this before..... Bless for doing it H... I'm not laughing at you, I value your friendship too much.... but you must admit these cups would never get clean............. and next time we'll simply have a cuppa and a chat! OK ?
And I am so grateful and honoured.
HUG ME , I'VE GOT MND
Subscribe to:
Posts (Atom)