White Rabbits! !!
Mum said this brought good luck if it was the first thing you said on the first of a new month.. shame I didn't remember till lunchtime!!
This was shower day. All the fiddle of getting in the chair happened.. clean clothes still awaited, and i trusted I would be a new woman, well I was clean anyway!!
Tesco man arrived.. found me via mob, sat nav was about to send him down a lane!
My diary seems amazingly empty for this day. I'm sure it was busy, as I have had no calm days yet! But obviously no booked in things..so I'll skip on to tomorrow!!
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.
Friday, 14 September 2012
FRIDAY 31 AUG
I woke, as lonely as I had been ,when I fell asleep. Totally desolate, at the bottom of an Everest.
Jenny arrived late morning and we did some more sorting of boxes. I had 2 aims: to find my toothbrush and to shower. Eventually we found the toothbrush. Oh ! , the pleasure of clean teeth. But the shower was not achieved.
Anne arrived at 2:00. Leaving her to do washing up or some similar, I excused myself to shower. All clothes out, got into bath wheel chair...( Its one you use your hands to push (another first) and it has a horse-shoe shaped seat, so that you can wash thoroughly. )
So there I was poised. Water on.. cold..wait..cold..wait..cold..
Eventually it occurred to me that I could sit till Christmas and the water wouldn't get hot.
Anne suggested ringing Richard.( I felt like suggesting a cry!!). He arrived with Steve and they both searched for the boiler. To this day I don't know where it is , but rather think it must be in the garage as water takes ages to get hot into the house. Richard found the fault, YEY!!! .... nothing to do with the boiler. The valve to allow water through had been turned off.
But by now my dirty body was dressed and it takes so much energy to dress and undress that I thought I would simply stay dirty, and I did.
Richard then spent a while sorting out email , BB connexion etc for me and both men fiddled with knobs and controls on things.. Stressing me out as I'm an instructions person, especially as the new stuff is not mine.. anyway, they realised I was getting anxious and stopped fiddling! Thankyou!
We also talked about carers and it so happened that Anne's dads, carer, lives in the road immediately opposite me. So contact was made and an arrangement to meet the following day.
That evening Rebecca and Tom were due to bring over my freezer food. They had been held up and asked if they could bring it the next afternoon. As I has no food I did say that I hoped they could bring it , even if late.
Anyway all was resolved very happily as they came over bringing Pizza!! So lovely to see them all.
I went to bed. and even though I had been surrounded by kind helpful people all day I still felt the desolation ........ a horrid empty feeling.
HUG ME, I'VE GOT MND
Jenny arrived late morning and we did some more sorting of boxes. I had 2 aims: to find my toothbrush and to shower. Eventually we found the toothbrush. Oh ! , the pleasure of clean teeth. But the shower was not achieved.
Anne arrived at 2:00. Leaving her to do washing up or some similar, I excused myself to shower. All clothes out, got into bath wheel chair...( Its one you use your hands to push (another first) and it has a horse-shoe shaped seat, so that you can wash thoroughly. )
So there I was poised. Water on.. cold..wait..cold..wait..cold..
Eventually it occurred to me that I could sit till Christmas and the water wouldn't get hot.
Anne suggested ringing Richard.( I felt like suggesting a cry!!). He arrived with Steve and they both searched for the boiler. To this day I don't know where it is , but rather think it must be in the garage as water takes ages to get hot into the house. Richard found the fault, YEY!!! .... nothing to do with the boiler. The valve to allow water through had been turned off.
But by now my dirty body was dressed and it takes so much energy to dress and undress that I thought I would simply stay dirty, and I did.
Richard then spent a while sorting out email , BB connexion etc for me and both men fiddled with knobs and controls on things.. Stressing me out as I'm an instructions person, especially as the new stuff is not mine.. anyway, they realised I was getting anxious and stopped fiddling! Thankyou!
We also talked about carers and it so happened that Anne's dads, carer, lives in the road immediately opposite me. So contact was made and an arrangement to meet the following day.
That evening Rebecca and Tom were due to bring over my freezer food. They had been held up and asked if they could bring it the next afternoon. As I has no food I did say that I hoped they could bring it , even if late.
Anyway all was resolved very happily as they came over bringing Pizza!! So lovely to see them all.
I went to bed. and even though I had been surrounded by kind helpful people all day I still felt the desolation ........ a horrid empty feeling.
HUG ME, I'VE GOT MND
THURSDAY 30TH AUG, MOVING DAY
I woke at 7:30, dressed....... took some photos... Elsa arrived at 8:40 and Howarth's at 9:00.. John at 9:30...
We sat, made tea, and I smoked a few cigarettes... until the kettle boiled over and wrecked the packet!! A quick shufty through the unpacked boxes, revealed another packet... was I ever pleased.
So at about one-ish, all was packed, and it was time for me to leave. I felt tense.
The Howarth's men carried me out on my transfer chair.
I got into car, but couldn't effect the lock down for the chair. I had forgotten that the passenger chair needs to be pulled forward, and John was sitting there. Howarth's men made stressful, (to me )comments, like .. Poor lady what if she was alone, and in the dark!!!
Oh dear!
After I sussed that the seat needed to be forward, and John got it sorted, we were were ready to move.
Elsa went ahead to get some lunch and bring to MM.
I arrived. The traffic gods had been with me and no hill starts required on Keighley rd. But he stress of feeling I might have to do a hill start was intense.
So I got to MM. Parked outside, there were 5 people waiting and the Howarth's van. They all said go onto the drive.
As there were so many watching , and I was so stressed, I didn't do a proper swing around. Thus meant I had to do a hill start on my drive. As ever it (the car) slipped back then jerked forward.. fast.. I nearly hit the house!!!!!!
So, for the first time , I entered my home in my new (wide ! ) wheelchair. I got through door.. difficult.. and simply collapsed.................... totally hysterical..
After a few moment I pulled myself together.
Richard needed to give me important instructions.
Howarth's were putting furniture in rooms.
Friends were buzzing round.
People surronded me, in my new chair it was so, sooo difficult to move!!
STOP THE WORLD I WANT TO GET OFF!!!!!!
The next few hours are somewhat of a blur.
Liz arrived, Pat had to leave... we sat and ate and drank quite a lot of wine.
Eventually I went to bed, absolutely shattered , but slept fitfully.
One of the loneliest nights I have ever spent.
I feel as if I have been moved here to die, I feel totally, totally displaced.
HUG ME, I'VE GOT MND
We sat, made tea, and I smoked a few cigarettes... until the kettle boiled over and wrecked the packet!! A quick shufty through the unpacked boxes, revealed another packet... was I ever pleased.
So at about one-ish, all was packed, and it was time for me to leave. I felt tense.
The Howarth's men carried me out on my transfer chair.
I got into car, but couldn't effect the lock down for the chair. I had forgotten that the passenger chair needs to be pulled forward, and John was sitting there. Howarth's men made stressful, (to me )comments, like .. Poor lady what if she was alone, and in the dark!!!
Oh dear!
After I sussed that the seat needed to be forward, and John got it sorted, we were were ready to move.
Elsa went ahead to get some lunch and bring to MM.
I arrived. The traffic gods had been with me and no hill starts required on Keighley rd. But he stress of feeling I might have to do a hill start was intense.
So I got to MM. Parked outside, there were 5 people waiting and the Howarth's van. They all said go onto the drive.
As there were so many watching , and I was so stressed, I didn't do a proper swing around. Thus meant I had to do a hill start on my drive. As ever it (the car) slipped back then jerked forward.. fast.. I nearly hit the house!!!!!!
So, for the first time , I entered my home in my new (wide ! ) wheelchair. I got through door.. difficult.. and simply collapsed.................... totally hysterical..
After a few moment I pulled myself together.
Richard needed to give me important instructions.
Howarth's were putting furniture in rooms.
Friends were buzzing round.
People surronded me, in my new chair it was so, sooo difficult to move!!
STOP THE WORLD I WANT TO GET OFF!!!!!!
The next few hours are somewhat of a blur.
Liz arrived, Pat had to leave... we sat and ate and drank quite a lot of wine.
Eventually I went to bed, absolutely shattered , but slept fitfully.
One of the loneliest nights I have ever spent.
I feel as if I have been moved here to die, I feel totally, totally displaced.
HUG ME, I'VE GOT MND
Thursday, 13 September 2012
WEDNESDAY 29TH AUG
So I woke, day before move. Left knee and toes very very painful. In other circumstances I would have gone to A&E, but I knew I couldn't walk and thus an ambulance would have to be called. This seemed a bit extreme so I called Dr who suggested Ibuprofen...
I wanted to shower. But couldn't stand. A good fairy in the form of Christine Chapman happened to ring. She works as a care assistant at a nursing home, so I felt completely comfortable with her helping me into shower and even washing my back
.I changed into my last set of clean clothes prior to move
I had arranged with my OT to meet at new home to fix position of grab rails... couldn't get there so had to cancel.
.
Realising that I would be able to exit Thorn Place, except on my bum, I rang Howarths removals who were due to move my furniture and asked if they would carry me out too. YES, they said.
The last night was v v difficult. I had saved a meal of curry, but couldn't eat.. I slept fitfully.
HUG ME, IVE GOT MND
I wanted to shower. But couldn't stand. A good fairy in the form of Christine Chapman happened to ring. She works as a care assistant at a nursing home, so I felt completely comfortable with her helping me into shower and even washing my back
.I changed into my last set of clean clothes prior to move
I had arranged with my OT to meet at new home to fix position of grab rails... couldn't get there so had to cancel.
.
Realising that I would be able to exit Thorn Place, except on my bum, I rang Howarths removals who were due to move my furniture and asked if they would carry me out too. YES, they said.
The last night was v v difficult. I had saved a meal of curry, but couldn't eat.. I slept fitfully.
HUG ME, IVE GOT MND
TUESDAY 28TH AUGUST
Janet (reading group) came in the morning and we did what I felt might be the last of the packing.... but it turn out to be... but did do lots.
The , very sadly, Ginny came to take me with Meggie to the Cattery. It was sad to move her from her garden. Her last time in Thorn Place, her home, her security.. She was sitting enjoying the sun all day ... I could have cried as we got her into the cat box. Up we went to Knowl Farm Cattery and I could have wept as I left her. But I didnt .. I know it was best for her to be away from all the people and packing, it would have distressed her too mush. I arranged with Andrew and Margaret that she would stay until the baby was born as I didnt want to have her at the new house for a short while only to have to have to take her back again.
Steve and Es, neighbours came for dinner... Curry Take away!
At1:00 in the morning I fell in the bathroom. My fall detector didn't go off. I hurt my left knee and toes. I had my mob on me, but Voda no connexion. So a long crawl to the bedroom where I managed to knock down the main phone. I called for Steve C , his turn , everyone else had had a go at picking me off the floor! I do have a MANGA which pumps up and lifts me off the floor, but there were so many boxes in the way I couldn't get to it!!
The , very sadly, Ginny came to take me with Meggie to the Cattery. It was sad to move her from her garden. Her last time in Thorn Place, her home, her security.. She was sitting enjoying the sun all day ... I could have cried as we got her into the cat box. Up we went to Knowl Farm Cattery and I could have wept as I left her. But I didnt .. I know it was best for her to be away from all the people and packing, it would have distressed her too mush. I arranged with Andrew and Margaret that she would stay until the baby was born as I didnt want to have her at the new house for a short while only to have to have to take her back again.
Steve and Es, neighbours came for dinner... Curry Take away!
At1:00 in the morning I fell in the bathroom. My fall detector didn't go off. I hurt my left knee and toes. I had my mob on me, but Voda no connexion. So a long crawl to the bedroom where I managed to knock down the main phone. I called for Steve C , his turn , everyone else had had a go at picking me off the floor! I do have a MANGA which pumps up and lifts me off the floor, but there were so many boxes in the way I couldn't get to it!!
Wednesday, 12 September 2012
MONDAY 27TH AUG
Today the plane was to take stuff to Misty Morn, and the go on to Ikea... all to get used to driving with my hands so that when baby grandchild arrives in a week or so I will feel confident to drive to Northampton.
This , in fact was a revised plan.. I should have gone on Sunday 26th.. but something happened to prevent this.. my diary doesn't indicate why.
Well I left Tod in pouring rain. As I could no longer get down the steps, and had to get out on my bottom, I got Steve C to wrap me Mummy-like in black plastic bags.! Fine idea, in the house, but as I moved down the steps the bags separated and my bum got soaking wet. Steve who by this time was also soaking got a towel for me to sit on in car.
Ginny had to go to hairdressers and thus couldn't wait to help unload, but Elsa was there and moved stuff in. I couldn't enter house and organise as the carets had only just been stuck down and I couldn't go on them for 24hrs.
So no visit, inside my new home, in my wheel chair, yet!!
Off to Ikea, E always goes to Warrington. After a while we noticed that there was road closure , accident, so we turned and went to Ikea Batley. However before we even got to the turn round point I realised how stressed I was, how exhausted and how unable I would be to get to Northampton when baby S arrived.
The trip on motorway was Ok, actually got up to 60mph, but did no overtaking. But this car is soo soo stressful to drive.. not at all confident.
At Ikea , the coffee table I planned to buy was not very large, looked like a child's piece of furniture! But I did manage to get the refund on the chair cover, within the 90 days... just!
When we got back to HB, Elsa took a taxi home as I was simply too tired and stressed to drive up the Keighley road with its possible hill starts. I did get back to Tod safely and collapsed with a large G&T,
HUG ME, I'VE GOT MND
This , in fact was a revised plan.. I should have gone on Sunday 26th.. but something happened to prevent this.. my diary doesn't indicate why.
Well I left Tod in pouring rain. As I could no longer get down the steps, and had to get out on my bottom, I got Steve C to wrap me Mummy-like in black plastic bags.! Fine idea, in the house, but as I moved down the steps the bags separated and my bum got soaking wet. Steve who by this time was also soaking got a towel for me to sit on in car.
Ginny had to go to hairdressers and thus couldn't wait to help unload, but Elsa was there and moved stuff in. I couldn't enter house and organise as the carets had only just been stuck down and I couldn't go on them for 24hrs.
So no visit, inside my new home, in my wheel chair, yet!!
Off to Ikea, E always goes to Warrington. After a while we noticed that there was road closure , accident, so we turned and went to Ikea Batley. However before we even got to the turn round point I realised how stressed I was, how exhausted and how unable I would be to get to Northampton when baby S arrived.
The trip on motorway was Ok, actually got up to 60mph, but did no overtaking. But this car is soo soo stressful to drive.. not at all confident.
At Ikea , the coffee table I planned to buy was not very large, looked like a child's piece of furniture! But I did manage to get the refund on the chair cover, within the 90 days... just!
When we got back to HB, Elsa took a taxi home as I was simply too tired and stressed to drive up the Keighley road with its possible hill starts. I did get back to Tod safely and collapsed with a large G&T,
HUG ME, I'VE GOT MND
I'M BACK... AND CATCHING UP !!!
Well I last wrote on Aug 26th ( or thereabouts). Since that time I have left my home in Todmorden and moved to a bungalow nr Hebden Bridge.
This has been far more traumatic than I ever thought it would be ! I thought I would be "Off Air" , for about a week... but it has been over 2 weeks... so to catch up I'll write blogs in date order... providing i have the time to do it all all should be on track again by the week end... Fingers Crossed!!!
HUG ME , IVE GOT MND
This has been far more traumatic than I ever thought it would be ! I thought I would be "Off Air" , for about a week... but it has been over 2 weeks... so to catch up I'll write blogs in date order... providing i have the time to do it all all should be on track again by the week end... Fingers Crossed!!!
HUG ME , IVE GOT MND
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