So,.......... dentist visit this morning. Got up at 8:30 and had arranged for Laura to come early so that I could shower...
So dear Laura, arrived at 9:30... this was a big concession for her as it meant she didn't have a leisurely start and,in fact, had to take her partner to work early.... so thanks for being helpful Jess, and I hope the cuppa set you up for the day !
So yes, Laura arrived and pushed me into the shower.
Showering is a major problem in my life! I hate to be unclean and love the fresh feeling following a shower.... but after an episode whereby I had GREAT difficulty transferring from electric chair to shower chair a few weeks ago, I decided that for peace of mind and indeed safety, I would no longer shower when alone in the house.....
I do wash and dress myself but simply need the reassurance that someone would be there should I stumble.
At 10:00 Sarah, podiatrist arrived and changed the dressing on my toe. It is healing nicely... great. Sarah left with a promise to return next week to check toe and to give me a foot massage... wonderful !
I got dressed , had half a cup of coffee and set off to go to Tod for dental appointment.Got in Green Van... and to speed things up, got Laura to do my set belt.... Thought something was funny.... a beep beep beeping noise. Started engine, closed rear ramp and door.................
Well no, tried to close ramp and door............... it wouldn't.......... it didn't ............ I tried engine on......... engine off...........
IT STILL DID NOT B***** WELL CLOSE!!!
THAT B***** VAN/CAR/ THING !!!!!!
AGAIN !!!!!!!!!
So, for the second day running I had made a great effort ! And great effort it is too......... I feel really ill each morn.... not just tired but often ill.... stomach ache head ache... well general body ache..........
I do know that after breakfast, coffee a cigarette and my meds that in 45mins or so I will be Ok....... but until then I simply want to crawl back into bed and stay there. It takes great strength of character to do more than sit in wheelchair and feel very sorry for myself ......
So character much tested ........ I rang the dentists, who simply couldn't understand that the back door of my car wouldnt close and were even more mystified when I explained how I accessed the WAV, what a WAV was etc........ It was left that, on this occasion, I wont have to pay for late cancellation but in future .... ?????!!!!!!
So no dentists ! Drank the now cold, other half of the cup of coffee.
Rang the RAC.
This time Ian came ....... nice thorough man. Had to read the handbook..... found no fault ....... Why ? It seems the battery (new yesterday) had to reset itself ???? But it also had turned off the airbags ?????
Don't ask me..... I'm only the driver who wants safety and reliability ! BUT he did suggest we went for a drive ........... So once again, in pouring rain and heavy windy blusters I went out.
All was well.
BUT
Watch this space. I need to go out tomorrow....... the most important appointment .... It's nails day !
And if they don't get done , well ,all I can ask, is that you send me a hug via the nearest funny farm !!
(And just to add to the stress.. whilst writing this the settings went funny.... so if this is odd, it's really not me it's the computer !!! Bad workman I hear you say !!! LOL!!!!)
HUG ME, I'VE GOT MND
Showing posts with label stress. Show all posts
Showing posts with label stress. Show all posts
Wednesday, 30 January 2013
Wednesday, 25 July 2012
THE WHEEL-CHAIR/CAR SAGA,, A DIFFICULT AFTERNOON
Today was a busy day.. Rebecca came to move push zimmer into car, as she arrived early she managed to empty dishwasher , load dishwasher and fold and put away washing. So a great start. Thankyou Rebecca and Iris.
Without a cleaner ( she's on holiday) this week, it has been difficult.. and also managing without a fridge/freezer.. sadly, I've got behind in tidiness, as to tidy takes so much energy. Help from good friends is invaluable.
Last evening I went out, and was so grateful for lifts, but when you cant move yourself in a push wheel-chair, you can feel quite disadvantaged and quite vulnerable, you cant move yourself to be sociable.
I seem to get the feeling that others don't know how to approach us, ie the us with MND. But my view on this is, that we,who have MND, and are trying to cope ,....................... please people do give us your support. We are just normal people who have a shit illness!
Anyway all my difficulties were due to end today.. I was supposed to get wheel chair, then take it on to Brookes Miller at Elland to be measured, to have lock-down fitted. This would have meant that I would be independent and free in so many ways and would collect car on Friday...
Yes, I would need help to charge chair, and to get me from back to front of home. But I did realise I could get neighbours to give me a lift .......or even ring a taxi to do the move. £3 would be a small price to pay for the freedom I would have...
So after a visit to Misty Morn, to check on paint colours, I drove to Wheelchair services in Halifax.
We did tests and found that when I reversed the wheels caught the foot rests and scraped my ankles. Realising that if the chair was tilted then this problem was solved. Then on to kerb climbing! Wow how terrifying is this. You have to approach kerb with speed and keep going. if you don't keep up speed then you get stuck! To get off curb you have to approach backwards . Haven't got the vocab to describe this hanging and bumping in mid air!! Believe me I shall avoid kerbs wherever possible. Heaven help any person who parks in front of a dropped curb from now on ... they will so get the edge of my tongue!!
Unless you have these challenges to face you simply don't know how hard they are.
Olympic games , we all deserve gold medals!!
So, with new shiny wheel chair in back of green van, I set off for Elland. Getting used to controls now... feeling good.. freedom is nigh!!
Get to garage dept. Having looked at car and chair, there was much shaking of heads. The lock down will need to be special as the height of the chair is slim, any low lock down will scrape getting into van and also will scrape on any rough surface.. even including door bars between rooms.... so no use... The appropriate lock-down will cost £1000.
I had been given to understand that whatever lock down I needed would be free from Motability. I believe I have been mislead.
SO... not only do I not have planned freedom this Friday.. a weekend of fun with Lisa, the ability to go Chrissies Baby shower ( which she has planned with a place on mind with ramps and disabled toilets). but also I still can't even get into doctors, cant go round shops without a pusher...etc etc .... and at the end this it could all cost £1000.
£1000 in other terms would be 60-70 hours of a carer.
Waiting another month could be 1/24 th of my life.. It has been 3 months, .........1/8 th of my life waiting for wheel chair, and since DLA award in Jan, (when I could have had a car, but have waited to get the right one), it's been a possible 1/4 of my life...
( these fractions worked out on MNDA expectation of life of 2 years..even if its 3 yrs or longer. it is doubtful that I will manage to drive round, and not need considerable help after 2 years.)
Dramatic these effects....
Most importantly it's the mental effect not being free,the mental effect of having had to wait , patiently, for the wheel chair, and yet to find that I still can't use it...
This is so, so , terrible... much more than frustrating.....you cant imagine.
I want to use, live my life for as long as I have.
If I were rich, so many of these problems wouldn't exist... but I'm not.... where is the morality in this.... I've been an honest, diligent worker all my life.
I don't mean to be greedy, and I do realise that there are many others in need, but get a grip government, this is simply not good enough...
HUG ME, I'VE GOT MND
Without a cleaner ( she's on holiday) this week, it has been difficult.. and also managing without a fridge/freezer.. sadly, I've got behind in tidiness, as to tidy takes so much energy. Help from good friends is invaluable.
Last evening I went out, and was so grateful for lifts, but when you cant move yourself in a push wheel-chair, you can feel quite disadvantaged and quite vulnerable, you cant move yourself to be sociable.
I seem to get the feeling that others don't know how to approach us, ie the us with MND. But my view on this is, that we,who have MND, and are trying to cope ,....................... please people do give us your support. We are just normal people who have a shit illness!
Anyway all my difficulties were due to end today.. I was supposed to get wheel chair, then take it on to Brookes Miller at Elland to be measured, to have lock-down fitted. This would have meant that I would be independent and free in so many ways and would collect car on Friday...
Yes, I would need help to charge chair, and to get me from back to front of home. But I did realise I could get neighbours to give me a lift .......or even ring a taxi to do the move. £3 would be a small price to pay for the freedom I would have...
So after a visit to Misty Morn, to check on paint colours, I drove to Wheelchair services in Halifax.
We did tests and found that when I reversed the wheels caught the foot rests and scraped my ankles. Realising that if the chair was tilted then this problem was solved. Then on to kerb climbing! Wow how terrifying is this. You have to approach kerb with speed and keep going. if you don't keep up speed then you get stuck! To get off curb you have to approach backwards . Haven't got the vocab to describe this hanging and bumping in mid air!! Believe me I shall avoid kerbs wherever possible. Heaven help any person who parks in front of a dropped curb from now on ... they will so get the edge of my tongue!!
Unless you have these challenges to face you simply don't know how hard they are.
Olympic games , we all deserve gold medals!!
So, with new shiny wheel chair in back of green van, I set off for Elland. Getting used to controls now... feeling good.. freedom is nigh!!
Get to garage dept. Having looked at car and chair, there was much shaking of heads. The lock down will need to be special as the height of the chair is slim, any low lock down will scrape getting into van and also will scrape on any rough surface.. even including door bars between rooms.... so no use... The appropriate lock-down will cost £1000.
I had been given to understand that whatever lock down I needed would be free from Motability. I believe I have been mislead.
SO... not only do I not have planned freedom this Friday.. a weekend of fun with Lisa, the ability to go Chrissies Baby shower ( which she has planned with a place on mind with ramps and disabled toilets). but also I still can't even get into doctors, cant go round shops without a pusher...etc etc .... and at the end this it could all cost £1000.
£1000 in other terms would be 60-70 hours of a carer.
Waiting another month could be 1/24 th of my life.. It has been 3 months, .........1/8 th of my life waiting for wheel chair, and since DLA award in Jan, (when I could have had a car, but have waited to get the right one), it's been a possible 1/4 of my life...
( these fractions worked out on MNDA expectation of life of 2 years..even if its 3 yrs or longer. it is doubtful that I will manage to drive round, and not need considerable help after 2 years.)
Dramatic these effects....
Most importantly it's the mental effect not being free,the mental effect of having had to wait , patiently, for the wheel chair, and yet to find that I still can't use it...
This is so, so , terrible... much more than frustrating.....you cant imagine.
I want to use, live my life for as long as I have.
If I were rich, so many of these problems wouldn't exist... but I'm not.... where is the morality in this.... I've been an honest, diligent worker all my life.
I don't mean to be greedy, and I do realise that there are many others in need, but get a grip government, this is simply not good enough...
HUG ME, I'VE GOT MND
Tuesday, 26 June 2012
OUTSIDE MYSELF
I had a home visit from my psychiatrist today. He completely understood why I can't see him at the medical centre until I get an appropriate wheel chair. (see para after this re wheelchair.) The design of the splendid new Centre in Todmorden is so daft, and inaccessible for people who have difficulty walking. There is a choice of ramp or steps... But the ramp is quite steep and long as it has to rise to quite a height. It therefore would take two people to push me up to the entrance. It is likely that I might be able to find two friends who would be willing to do this.... However, why should I? It's simply not right that I inconvenience people in this way.
..... Anyway, I have been feeling as though I am looking down on myself and watching all that is happening to me. It such a strange disorientating feeling, and makes me feel so unreal. I'm watching a video of myself.. and yet I'm here.... As I thought , and he confirmed, this feeling happens when people are in extreme stress , it's a coping mechanism. It doesn't make it right, or make it better, but it's good to have an explanation for this horrid, weird feeling.
He suggested that I might need some respite, and I agree. The few days I had in hospital were such a break. I felt safe, and anxieties dropped away for a while. food came without the battle in the kitchen , I could shower safely, support was there... I could easily have become institutionalized!
Anyway I have decided to talk to a GP re a referral to Overgate Hospice. Even if I just spend the odd day there,I will have a meal, enjoy company and be able to have a safe bath... it is so long since I was immersed in water. I wouldn't wish this every day, but it would be such a treat every so often.
The other advantage of the Hospice, is that I think that is where I wish to die.. I need to be secure in wherever the place is. From what I have heard people are so caring, and the atmosphere is positive, even though all people are terminally ill. The other major factor is, that, I understand that families are supported as a whole. It is important to me that my girls and their husbands are supported when I die. This could be the right place for me to spend my last days.
.....................................Wheelchair ,update... (adding to stress). Next Friday will be 6 weeks from when I was given the training for the outdoor/indoor wheelchair. I was told I would get it in 4 to 6 weeks. I thought I would ring today to see what was what. What I did find was that it actually wasn't ordered till 2 1/2 weeks after the assessment! This is to do with budgets!!! So now I have extra time to wait..... more stress..
........................................And yet more stress.. the money being released from the sale of my house, which I will have upfront to get the adaptations done on the bungalow... well the relevant people (from sheffield, don't ask!!!) sent a form to fill in... no problem. BUT I have to send in my house insurance. This is fine , but they expect it to be for 200K, the sale price, yet a rebuild price is only about 150K, so now I have to adjust insurance.... another stress... I need a secretary!!!!!
Tomorrow I go to Sheffield to see Prof Shaw, to get the results of the tests .
Watch this space..
but maybe no news tomorrow as the trip to Sheffield is exhausting, so I doubt that I will Blog tomorrow night.
HUG ME, I'VE GOT MND
..... Anyway, I have been feeling as though I am looking down on myself and watching all that is happening to me. It such a strange disorientating feeling, and makes me feel so unreal. I'm watching a video of myself.. and yet I'm here.... As I thought , and he confirmed, this feeling happens when people are in extreme stress , it's a coping mechanism. It doesn't make it right, or make it better, but it's good to have an explanation for this horrid, weird feeling.
He suggested that I might need some respite, and I agree. The few days I had in hospital were such a break. I felt safe, and anxieties dropped away for a while. food came without the battle in the kitchen , I could shower safely, support was there... I could easily have become institutionalized!
Anyway I have decided to talk to a GP re a referral to Overgate Hospice. Even if I just spend the odd day there,I will have a meal, enjoy company and be able to have a safe bath... it is so long since I was immersed in water. I wouldn't wish this every day, but it would be such a treat every so often.
The other advantage of the Hospice, is that I think that is where I wish to die.. I need to be secure in wherever the place is. From what I have heard people are so caring, and the atmosphere is positive, even though all people are terminally ill. The other major factor is, that, I understand that families are supported as a whole. It is important to me that my girls and their husbands are supported when I die. This could be the right place for me to spend my last days.
.....................................Wheelchair ,update... (adding to stress). Next Friday will be 6 weeks from when I was given the training for the outdoor/indoor wheelchair. I was told I would get it in 4 to 6 weeks. I thought I would ring today to see what was what. What I did find was that it actually wasn't ordered till 2 1/2 weeks after the assessment! This is to do with budgets!!! So now I have extra time to wait..... more stress..
........................................And yet more stress.. the money being released from the sale of my house, which I will have upfront to get the adaptations done on the bungalow... well the relevant people (from sheffield, don't ask!!!) sent a form to fill in... no problem. BUT I have to send in my house insurance. This is fine , but they expect it to be for 200K, the sale price, yet a rebuild price is only about 150K, so now I have to adjust insurance.... another stress... I need a secretary!!!!!
Tomorrow I go to Sheffield to see Prof Shaw, to get the results of the tests .
Watch this space..
but maybe no news tomorrow as the trip to Sheffield is exhausting, so I doubt that I will Blog tomorrow night.
HUG ME, I'VE GOT MND
Wednesday, 23 May 2012
MESSAGE TO SELF !!!!
What will be will be.... a damn hard lesson to get into my thick head!
I am trying to de-clutter my house in the next 10days, send the de-cluttered stuff to store, then my house will look at its best to go on the market.
But I'm getting stressed.. I keep telling myself ..Calm down, what will be will be.. But I can't! BUT I MUST !!!!
It's rather like that game where you move squares around, up, down and .. eventually... get a whole picture! I see the whole picture, and want it NOW!!!!!! but must relax to get it sorted.
Stop ranting , live, girl, live! You've got treats.. tonight Pizza, wine friends Christine X2, tomorrow Di, Eileen and Choc Brownies.. Help from kind Samaritans... You are lucky, you will get through...
Then pep talk delivered to self., I remember ............ shelves fell off wall in attic... now covered by book shelf.. I need a plasterer.. will polyfilla do? Who can I ask? And I can't even get there to see it!!!!
And all this whilst the sun shines, that's where I should be not stressing. Perhaps it's time to take a note book into garden and write it all down.
Yep! Lists are wonderful for clearing the head.. That's what I'll do, with a cup of Earl Grey... that will be splendid!
I am trying to de-clutter my house in the next 10days, send the de-cluttered stuff to store, then my house will look at its best to go on the market.
But I'm getting stressed.. I keep telling myself ..Calm down, what will be will be.. But I can't! BUT I MUST !!!!
It's rather like that game where you move squares around, up, down and .. eventually... get a whole picture! I see the whole picture, and want it NOW!!!!!! but must relax to get it sorted.
Stop ranting , live, girl, live! You've got treats.. tonight Pizza, wine friends Christine X2, tomorrow Di, Eileen and Choc Brownies.. Help from kind Samaritans... You are lucky, you will get through...
Then pep talk delivered to self., I remember ............ shelves fell off wall in attic... now covered by book shelf.. I need a plasterer.. will polyfilla do? Who can I ask? And I can't even get there to see it!!!!
And all this whilst the sun shines, that's where I should be not stressing. Perhaps it's time to take a note book into garden and write it all down.
Yep! Lists are wonderful for clearing the head.. That's what I'll do, with a cup of Earl Grey... that will be splendid!
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