Well, now it's Sunday evening, actually! I had just opened this post when Caroline, newly returned from Edinburgh, brought in kir and nibbles so that put paid to writing. After roast lamb we sat in the garden where it was cooler than in the house to enjoy our chocolate ice cream. It is the first time this summer that it's been possible to do this, warm with a gentle breeze and bright afternoon fading into the crepuscular light of evening. (left post at this point due to fatigue!).
Now it's 11.30 on Monday morning. Weather dull. Had a good night with Nippy, but there's still some way to go before I'm totally comfortable with it. Audrey's been and gone, Christine has just picked up Monica to take her to Maidstone. This is the last week of her treatment - hurrah! So for a few minutes I'm home alone giving me the opportunity to catch up on the blog.
The weekend was very hot with the car thermometer showing 32 when we went to the FoodHall with Mary on Saturday. I was pushed around in the wheelchair again. I really hop that the powerchair arrives this week, but after the pillow lift disappointment last week I'm not holding my breath, although that is something I can still do! Apart from shopping we spent most of the weekend trying to keep cool.
We discussed the judgement that resulted in stroke victim Tony Nicklinson being denied assistance to end his life after 7 years of being 'locked in', and the view blogged by ALS suffering artist Sarah Ezekiel who argued powerfully for the status quo. There is a clear difference in Tony's case, but it is not an excuse to change the law given all the potential abuse it could be heir to. He needs the robotic means to deliver the fatal dose that he could control with his eye movement.
Monday, 20 August 2012
Monday, 13 August 2012
Monday
Dull day post-Olympics, though that was not the least disappointing feature of the day. Today was the date of delivery for my eagerly awaited pillow lifter. Monica was off to Maidstone so attached a note to the front door requesting the couriers to give me time to get to the door. They arrived late morning and took the equipment upstairs, Monica arrived at the same time, so we were both present for the demonstration. However, when connected, the device would not operate correctly so could not be installed! It was a real Victor Meldrew moment as I had been anticipating the benefit to my sleeping and rising that the lifter would bring. Now I have no idea when I might expect one.
For joy and entertainment I completed my VAT return, reflecting that it is the last time I will do so, a thought that keeps recurring to me from time to time.
For joy and entertainment I completed my VAT return, reflecting that it is the last time I will do so, a thought that keeps recurring to me from time to time.
Sunday, 12 August 2012
Sunday Morning
Hey! Posts on two consecutive days - must be feeling good! Third night with Nippy on the whole slightly better. Woke a couple of times needing a drink and settled to a more natural sleeping position after the second rousing at 4 ish to sleep until nearly 8 am. Got up for bathroom and found neck to be ok, so decided to come through to the pc which is now sited in front of the Lift Lounge window on the first floor, overlooking the park. The sun is shining and there are some strings of cumulus giving perspective to the light blue sky. I'm hoping that Caroline will make some tea soon!
We had a pleasant evening yesterday when she returned from her day at a luxury spa with all the ingredients for a prawn & coriander curry which she prepared while we all sipped Chapel Down Rose watching Mo Farrah win his second gold. With dinner over, and the wine bottle drained, we settled down to see Bolt's team make a record run for relay gold and Tom Daley dive for bronze, whilst we nibbled Florentines, washed them down with fruit tea or espresso and digestifs, tweeting away the hours before bedtime.
All these things, so simple, so ordinary but on which the tenure of my lease will be foreclosed by the heartless advance of ALS; though that makes them even more special and I enjoy them more keenly.
Tonight is the Olympics closing ceremony, which I hope will not be an anti-climax in comparison to the outstandingly memorable opener. Suggestions on Twitter for possible features are sticking an atomic charge in Boris's fundament and firing him out of the stadium, and putting Elton John in the event time capsule! However, let's wait and see.
We had a pleasant evening yesterday when she returned from her day at a luxury spa with all the ingredients for a prawn & coriander curry which she prepared while we all sipped Chapel Down Rose watching Mo Farrah win his second gold. With dinner over, and the wine bottle drained, we settled down to see Bolt's team make a record run for relay gold and Tom Daley dive for bronze, whilst we nibbled Florentines, washed them down with fruit tea or espresso and digestifs, tweeting away the hours before bedtime.
All these things, so simple, so ordinary but on which the tenure of my lease will be foreclosed by the heartless advance of ALS; though that makes them even more special and I enjoy them more keenly.
Tonight is the Olympics closing ceremony, which I hope will not be an anti-climax in comparison to the outstandingly memorable opener. Suggestions on Twitter for possible features are sticking an atomic charge in Boris's fundament and firing him out of the stadium, and putting Elton John in the event time capsule! However, let's wait and see.
Saturday, 11 August 2012
Saturday
Well, I started a post one day last week but was interrupted by the arrival of someone whose identity has already been wiped from my memory. There is a range of people that it would have been but precisely who I cannot recall. This may be because it has been something of a Piccadilly Circus here in recent days.
Toby's been around for the past couple of weeks, latterly with his partner, Dagmar, but they've headed back to Dubai today.
Monica is at the end of her second week of daily radiotherapy sessions at Maidstone Hospital which has involved different friends and family members, who are providing transport, popping in to say hello at pick up and drop off.
There have also been visits from therapists, including our old friend Angie who is giving us some alternative treatment to help us along. The lift engineer has been back to fit soundproofing to the drive unit, too.
Last Wednesday I spent the night at the Neurology Hospital being acclimatised to a Nippy, which is a machine to assist my breathing when asleep. Caroline went with me so that she could be trained in its operation. The trial was successful so I was issued with a machine and supporting paraphernalia to bring home, so it was lucky that she came to pick me up on Thursday morning or it would have been impossible to transport!
Yesterday we had a celebratory family meal at 'The Sportsman', a Michelin starred Gastropub at Seasalter. It was a beautiful summer day. The food was splendid and we all had a thoroughly good time.
At bedtime we tried to rig up the bed to support me in a more upright sleeping position, which helps breathing in conjunction with the Nippy. It was moderately successful which meant I got a good night's sleep and woke with a clear head (and slight crick in the neck!).
Today I sat in the garden enjoying the sun for an hour after breakfast, while Monica mowed the grass. Then Ross came round with the boys and we all went into the park to watch Henry master the art of riding his bike without stabilisers for the first time, which he did in a very short time. It was great to watch him whizzing around from the confines of my wheelchair.
I've also spent hours watching the splendid BBC coverage of the Olympics over the past two weeks just don't know where the time goes!
Toby's been around for the past couple of weeks, latterly with his partner, Dagmar, but they've headed back to Dubai today.
Monica is at the end of her second week of daily radiotherapy sessions at Maidstone Hospital which has involved different friends and family members, who are providing transport, popping in to say hello at pick up and drop off.
There have also been visits from therapists, including our old friend Angie who is giving us some alternative treatment to help us along. The lift engineer has been back to fit soundproofing to the drive unit, too.
Last Wednesday I spent the night at the Neurology Hospital being acclimatised to a Nippy, which is a machine to assist my breathing when asleep. Caroline went with me so that she could be trained in its operation. The trial was successful so I was issued with a machine and supporting paraphernalia to bring home, so it was lucky that she came to pick me up on Thursday morning or it would have been impossible to transport!
Yesterday we had a celebratory family meal at 'The Sportsman', a Michelin starred Gastropub at Seasalter. It was a beautiful summer day. The food was splendid and we all had a thoroughly good time.
At bedtime we tried to rig up the bed to support me in a more upright sleeping position, which helps breathing in conjunction with the Nippy. It was moderately successful which meant I got a good night's sleep and woke with a clear head (and slight crick in the neck!).
Today I sat in the garden enjoying the sun for an hour after breakfast, while Monica mowed the grass. Then Ross came round with the boys and we all went into the park to watch Henry master the art of riding his bike without stabilisers for the first time, which he did in a very short time. It was great to watch him whizzing around from the confines of my wheelchair.
I've also spent hours watching the splendid BBC coverage of the Olympics over the past two weeks just don't know where the time goes!
Thursday, 2 August 2012
Thursday
It's August 2nd now. Last post was back in last month, meaning I haven't blogged for a couple of weeks, which is not to say that I've been short of material. To tell the truth I've found a bit of difficulty concentrating on things, writing being one of them. But I reckon I can knock out a few words now, so here goes. It has reminded me that the effects of my condition include the obvious: mobility, speech; and the covert: breathing, swallowing; progress of which creeps on surreptitiously, springing surprises occasionally.
On the plus side, the lift has been installed successfully meaning the nightly struggle on the staircase is a thing of the past. Toby has been home on holiday from Dubai this week. He invited his friend Andy to come and assist him in doing a range of DIY tasks, some of which have helped in getting the house back in order following the installation.
Last Saturday Henry graduated from pre-school, with a first in Lego/Playdough Studies. We all went to the ceremony, which was energetically multicultural and highly enjoyable. Afterwards I entertained the family with a 'Come Dine With Me' meal. The menu started with Lightly Curried Crab Salad, followed by Duck Leg Confit, then apple tarte tatin. I was completely exhausted by the time the first course hit the table!
My mobility scooter was returned to Shopmobility and they refunded my money in full. It was the only solution but I've lost my independent form of transport together with the ability to feel independent. I hope my power wheelchair will soon be delivered.
Our old friend, Angie, has been giving me some alternative therapy which is intended to encourage my body's immune system to heal itself - so we'll see how that goes.
I did a sleep test last week the result being that I need to be provide with a machine to assist my breathing at night so that I sleep more deeply and feel better as a result. This came out of my most recent consultation at Queen Square when the specialist raised the future need for me to have an alternative route for nutrition inserted into my stomach. So many things to come to terms with!
Luckily I continue to enjoy the love and care of my family, and look forward to the holiday in Malvern we have arranged to enjoy together later this month.
On the plus side, the lift has been installed successfully meaning the nightly struggle on the staircase is a thing of the past. Toby has been home on holiday from Dubai this week. He invited his friend Andy to come and assist him in doing a range of DIY tasks, some of which have helped in getting the house back in order following the installation.
Last Saturday Henry graduated from pre-school, with a first in Lego/Playdough Studies. We all went to the ceremony, which was energetically multicultural and highly enjoyable. Afterwards I entertained the family with a 'Come Dine With Me' meal. The menu started with Lightly Curried Crab Salad, followed by Duck Leg Confit, then apple tarte tatin. I was completely exhausted by the time the first course hit the table!
My mobility scooter was returned to Shopmobility and they refunded my money in full. It was the only solution but I've lost my independent form of transport together with the ability to feel independent. I hope my power wheelchair will soon be delivered.
Our old friend, Angie, has been giving me some alternative therapy which is intended to encourage my body's immune system to heal itself - so we'll see how that goes.
I did a sleep test last week the result being that I need to be provide with a machine to assist my breathing at night so that I sleep more deeply and feel better as a result. This came out of my most recent consultation at Queen Square when the specialist raised the future need for me to have an alternative route for nutrition inserted into my stomach. So many things to come to terms with!
Luckily I continue to enjoy the love and care of my family, and look forward to the holiday in Malvern we have arranged to enjoy together later this month.
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