100 days gone, and as I have so often said sometimes the time seems to have flown by and other times it seems to have been forever. What I do know is that since 21st November, cleo and I are closer, and more in love than we were then, if that's possible.
Apart from all the medical stuff, so much else has happened, particularly us getting married of course, which is about the biggest thing in my life at least.
In the post this morning we received a cd from our friends rose and Dave, who were at the wedding, with photographs taken by them, and all set to music. The song? You Raise Me Up, of course. Have to say that it had us both blubbing like mad before we had to go off to physio with James.
James got cleo working to put weight through her arm today, like she does with her leg, and this is to try and stimulate the triceps muscle, which works opposite to the biceps. In cleos case the biceps is firing but the triceps is not, and so it's almost impossible to get any movement in the arm until they both work opposite each other. James is still highly optimistic of getting something from the arm, and I am happy to go with that view. Based on the fact that cleo has sensitivity in the hand, and fingers, and some involuntary firing of muwcles james says there is still a good chance that something will come back there. I guess it's all about time and let's see right now. But we shan't give up on it. He even had me hold her arm to convince her that she was getting some voluntary movement there because she was thinking he was just saying it to keep her going. Not so, there is still something there in the upper arm, and I believe that with work and determination this will improve.
cleo has now admitted to herself the need for sleep, and so is more accepting of having to rest much more than she thought possible, but the last couple of days have proved that if she gets plenty of rest she does not feel so emotionally stressed, and we need to maintain that as her recovery continues.
We are under no illusions that this is no short term thing, and that her rehabilitation will continue for months, even years to come, but by good management of her lifestyle I am sure that she will achieve daily advances on her Road to Recovery.
Tuesday, February 28, 2006
Day 99 - The Power of Sleep
Sleep is the best healer, so they say. And I think I have to agree that it's true.
Having slept a good deal of yesterday, and most of last night, cleo woke this morning much refreshed. We had to cancel our physio with James because we had no car, but that was no problem. By lunchtime today, when I went to collect my car from the garage, cleo again went to bed to rest and slept again till about 5pm.
All the lack of sleep and worry from the last couple days seems to have ebbed away in those relaxed and restful hours. She looked a different person when she got up this evening, and I have to report that the laughter was back. There is no better indication of the mental state of a person, in my view, than the way they laugh.
I wrote a poem once about sleeping, which I have used here before, but I think it's worth another look:
Sleep, sweet cleo
Fear not
Your darkest dreams.
For I will guard you
When it seems
Defences fall away.
Relax and rest
Until your mind
Has purged the worst
Of thoughts placed there
By those who do not care.
And I will wait.
As cleo sleeps
I marvel at her innocence,
And kiss her lips.
She turns, and sighs
So fragile like a child
Just born.
Sleeps safely as I
Hold her in my arms, this
My duty till the dawn
If sleeping for a few hours can create that change then I will ensure that she is more rested in the future than she has been up till now. I would rather spend half the hours with her knowing she is as contented as she seemed this evening, and let her sleep the rest, because it would appear that sleep just may be the best healer of all.
She is beginning to accept that she needs more sleep than before the stroke, because of the recuperation process she is going through, and which, by the last 24 hours evidence, happens better when asleep than awake.
Having slept a good deal of yesterday, and most of last night, cleo woke this morning much refreshed. We had to cancel our physio with James because we had no car, but that was no problem. By lunchtime today, when I went to collect my car from the garage, cleo again went to bed to rest and slept again till about 5pm.
All the lack of sleep and worry from the last couple days seems to have ebbed away in those relaxed and restful hours. She looked a different person when she got up this evening, and I have to report that the laughter was back. There is no better indication of the mental state of a person, in my view, than the way they laugh.
I wrote a poem once about sleeping, which I have used here before, but I think it's worth another look:
Sleep, sweet cleo
Fear not
Your darkest dreams.
For I will guard you
When it seems
Defences fall away.
Relax and rest
Until your mind
Has purged the worst
Of thoughts placed there
By those who do not care.
And I will wait.
As cleo sleeps
I marvel at her innocence,
And kiss her lips.
She turns, and sighs
So fragile like a child
Just born.
Sleeps safely as I
Hold her in my arms, this
My duty till the dawn
If sleeping for a few hours can create that change then I will ensure that she is more rested in the future than she has been up till now. I would rather spend half the hours with her knowing she is as contented as she seemed this evening, and let her sleep the rest, because it would appear that sleep just may be the best healer of all.
She is beginning to accept that she needs more sleep than before the stroke, because of the recuperation process she is going through, and which, by the last 24 hours evidence, happens better when asleep than awake.
Monday, February 27, 2006
Day 98 - Boiling Point
Not an anger boiling point, as you may have imagined, but an overheating one. On my way home from work this morning cleo's car started to overheat, quite badly. I stopped at the services on the M2, and decided to call the recovery people. The head gasket had blown (for those who don't know this is major breakdown, and one that requires dismantling part of the engine to repair) and the car was a total non-runner from that moment.
I texted cleo and told her, and I don't think this helped; she said later that she had not slept well, and then the breakdown made her worry even more. By the time I got home with the recovered car she was tired, feeling ill, and looked awful.
Of course when one is not well, and with lack of sleep added to that, it becomes a downward slope, and thats how it was, with lots of tears and emotion. We had some breakfast and I suggested that she return to bed, after I had spoken to my work, who agreed that because I had no car I should not go in this evening. That was a relief I must say, as the train service to London at the weekends right now is awful. Once that was sorted cleo relaxed a little, and she and I both slept till the afternoon.
So we have all week to sort the cars, and mine should be fixed this week, cleo's can wait. Physio is scheduled early tomorrow with James, but we may have to cancel that till we have my car back. cleo will continue her exercises at home too, no thanks to the alien-abducted care team who are still obviously in some far flung galaxy light years from here.
I texted cleo and told her, and I don't think this helped; she said later that she had not slept well, and then the breakdown made her worry even more. By the time I got home with the recovered car she was tired, feeling ill, and looked awful.
Of course when one is not well, and with lack of sleep added to that, it becomes a downward slope, and thats how it was, with lots of tears and emotion. We had some breakfast and I suggested that she return to bed, after I had spoken to my work, who agreed that because I had no car I should not go in this evening. That was a relief I must say, as the train service to London at the weekends right now is awful. Once that was sorted cleo relaxed a little, and she and I both slept till the afternoon.
So we have all week to sort the cars, and mine should be fixed this week, cleo's can wait. Physio is scheduled early tomorrow with James, but we may have to cancel that till we have my car back. cleo will continue her exercises at home too, no thanks to the alien-abducted care team who are still obviously in some far flung galaxy light years from here.
Saturday, February 25, 2006
Day 97 - Saturday...boring!
Arriving home this morning after driving to and from work in cleo's car, which is far too small for me to fit into comfortably and for the journey which I do, as mine is in the garage, and hers being a manual gearchange too, without cruise control (no cruise=major trauma) I found cleo already up, and in the kitchen having a tidy up.
It is certainly good that she has the drive to get up and do things, because this all points to her wanting to get better. Many people would simply not bother, and let others do things for them, in cleo's case she is determined to do whatever she can for herself.
AS always Saturday's are difficult, because once home I have to sleep, and having slept I am up and out the door by 4pm to get back to work. cleo did remark that while asleep i was groaning about having to change gear...ahh well, such is the plight of an "automatic cruise control electric everything" car driver. I even woke up with cramp in my foot!
Just for the record I thought that as there was little news on other fronts today I would post a picture of my black beastie....
It is certainly good that she has the drive to get up and do things, because this all points to her wanting to get better. Many people would simply not bother, and let others do things for them, in cleo's case she is determined to do whatever she can for herself.
AS always Saturday's are difficult, because once home I have to sleep, and having slept I am up and out the door by 4pm to get back to work. cleo did remark that while asleep i was groaning about having to change gear...ahh well, such is the plight of an "automatic cruise control electric everything" car driver. I even woke up with cramp in my foot!
Just for the record I thought that as there was little news on other fronts today I would post a picture of my black beastie....
Friday, February 24, 2006
Day 96 - Heart to Heart
I have to report that as another week passes the care team are still being held hostage by aliens, because they have not been in touch; must be some fiendish experiment they are undergoing!
CLEO and I had a real heart to heart last night (well early this morning actually) after I had written yesterdays blog. I shall not go into the details except to say it became emotional, and we made some personal choices and agreements about both of us which I hope we are both happy with. It is not easy to contemplate one's own mortality, but I suppose if you don't then you are a fool to yourself. Enough said on that.
Physio today was interesting. James was trying to illicit a "balance response" in cleos toes on her left foot. What do i mean by that? stand in your bare feet and lean forward, watch your toes, as you begin to overbalance your toes move to counteract that. Such a small thing but vital for good stance, and even gait. In most of us that is a natural response which we dont even think about, it just happens. In cleo it didn't work in her left foot since the stroke. Suddenly, as she overbalanced her toes began to move, not much but enough to notice. Another victory!
Each of these little hurdles that are overcome are so important. On their own they might not seem much, but in the whole scheme of the Road to Recovery they are the building blocks that serve to create the recovery and rehabilitation which is so important to us all.
CLEO and I had a real heart to heart last night (well early this morning actually) after I had written yesterdays blog. I shall not go into the details except to say it became emotional, and we made some personal choices and agreements about both of us which I hope we are both happy with. It is not easy to contemplate one's own mortality, but I suppose if you don't then you are a fool to yourself. Enough said on that.
Physio today was interesting. James was trying to illicit a "balance response" in cleos toes on her left foot. What do i mean by that? stand in your bare feet and lean forward, watch your toes, as you begin to overbalance your toes move to counteract that. Such a small thing but vital for good stance, and even gait. In most of us that is a natural response which we dont even think about, it just happens. In cleo it didn't work in her left foot since the stroke. Suddenly, as she overbalanced her toes began to move, not much but enough to notice. Another victory!
Each of these little hurdles that are overcome are so important. On their own they might not seem much, but in the whole scheme of the Road to Recovery they are the building blocks that serve to create the recovery and rehabilitation which is so important to us all.
Thursday, February 23, 2006
Day 95 - Tough Choices.
CLEO is no doubt improving every day. Her determination and strength are shining examples to anyone who may have suffered a similar illness, that if you have enough focus and desire, pretty much anything can be overcome. Of course this is not all plain sailing. It is impossible to concentrate one's efforts continually for 24 hours every day. When that focus becomes a little blurred, then there are doubts and worries that will inevitably appear.
From quite early on, cleo has worried, as I am sure many do, that she may have another stroke. Every little twinge and ache that she feels, says to her that there might be a blood clot, or similar and that another stroke may be the result. This in itself I am sure must be wearing her down. I only wish that I could take that worry away. She gets tired, yes, through the physical exertions of dealing with her difficulties in walking and moving, and the effort which her body is putting into repairing itself, but I am convinced that much of the tiredness is through what might be described as nervous exhaustion.
Daily I see her struggling to achieve things which would have been (for her) simple before the stroke, which now present major obstacles. She is by nature an independent person, who finds frustration in having to ask for things that for the rest of us are everyday and normal.
Sometimes, we can shelter our loved ones too much. By that I mean, yes, I can go and make the tea, clear up, and do all kinds of other things, but by doing that am I further taking away her independence? Or should I try to let her do things for herself, and see her become frustrated because she cannot always manage. Is it worse if I allow her to start something, and then she has to ask for help when she didn't in the past?
I really am not sure how to approach this one, because I have her best interest at heart all the time: I want to wrap her up in cotton wool, hold her close and say "Don't worry, I will do it all", but will she eventually thank me for that. I doubt it. On the other hand if I let her do things will she become more frustrated if she fails, or worse, put herself in danger in some way.
These choices are not easy. I am not even sure whether I make the right decisions every day, in letting her do things, or doing them for her. It may be that over time we will settle into those choices by a process of elimination, finding out what she can, and cannot do, through experience.
In the meantime I have to say that I lean toward the "wrapping her up in cotton wool" choice, rather than the "let her get on with it" option. Even now I don't know if that's right or wrong. Maybe I should talk to her about it. Who knows. What I know is that I have to try and make the right choices to help cleo's rehabilitation move forward; if I do too much for her then I will undoubtedly slow the recovery down, and that would be the last thing I would want.
I love this woman more than life itself, and the single driving force behind all I do, is that I want to do the best for her that I possibly can. I hope I get it right.
From quite early on, cleo has worried, as I am sure many do, that she may have another stroke. Every little twinge and ache that she feels, says to her that there might be a blood clot, or similar and that another stroke may be the result. This in itself I am sure must be wearing her down. I only wish that I could take that worry away. She gets tired, yes, through the physical exertions of dealing with her difficulties in walking and moving, and the effort which her body is putting into repairing itself, but I am convinced that much of the tiredness is through what might be described as nervous exhaustion.
Daily I see her struggling to achieve things which would have been (for her) simple before the stroke, which now present major obstacles. She is by nature an independent person, who finds frustration in having to ask for things that for the rest of us are everyday and normal.
Sometimes, we can shelter our loved ones too much. By that I mean, yes, I can go and make the tea, clear up, and do all kinds of other things, but by doing that am I further taking away her independence? Or should I try to let her do things for herself, and see her become frustrated because she cannot always manage. Is it worse if I allow her to start something, and then she has to ask for help when she didn't in the past?
I really am not sure how to approach this one, because I have her best interest at heart all the time: I want to wrap her up in cotton wool, hold her close and say "Don't worry, I will do it all", but will she eventually thank me for that. I doubt it. On the other hand if I let her do things will she become more frustrated if she fails, or worse, put herself in danger in some way.
These choices are not easy. I am not even sure whether I make the right decisions every day, in letting her do things, or doing them for her. It may be that over time we will settle into those choices by a process of elimination, finding out what she can, and cannot do, through experience.
In the meantime I have to say that I lean toward the "wrapping her up in cotton wool" choice, rather than the "let her get on with it" option. Even now I don't know if that's right or wrong. Maybe I should talk to her about it. Who knows. What I know is that I have to try and make the right choices to help cleo's rehabilitation move forward; if I do too much for her then I will undoubtedly slow the recovery down, and that would be the last thing I would want.
I love this woman more than life itself, and the single driving force behind all I do, is that I want to do the best for her that I possibly can. I hope I get it right.
Day 94 - Close encounters....
I think that apart from Emily, everyone on the home care team must be called Percy Blakeney. "Who was he?" I hear you say; "The Scarlet Pimpernell" I reply. They are just not to to be found anywhere, and even James seems to have lost touch with them. Either that or they have all been abducted by aliens and are even as we speak subject to some horrific experiments in deep space. Personally I think I prefer the latter for them; Blakeney was a good guy at heart, and at least he did turn up when he was really needed. There haven't been many UFO sightings over East Kent this week, but a cloak of invisibility is standard on most modern day alien spacecraft so I understand....still, we can't even get a close encounter of any kind with the care team at present.
Physio today was hard work for cleo, James giving her a really hard time, pushing her past the pain barrier while working on her arm and shoulder. As he says, he must push her otherwise there will be no benefit. Of course we both know that, but its hard for me to see her cry because of the pain, and I know James doesn't enjoy it when he accidentally goes too far. For cleo too, the pain can be intense, and I have the utmost admiration for her because she keeps going back, knowing that it may hurt, but always driven by her need to get better.
Laughter: the best medicine
Dinner times are quite special in our house. We always hoped that one day we would have the space to sit and eat as a family, which was not really possible in the flat we rented before. When we bought our house last year we were lucky enough to have a large kitchen/diner and throughout the week we all tend to come together as a family for dinner in the evenings. Tonight was no exception, and I had cooked a nice roast. Now one thing we have always done is to laugh, often at the silliest things. At the moment cleo still has a little trouble eating and is apt to choke on her food from time to time. Making her laugh is really not fair, and I can't even remember what it was that made us all laugh tonight but we ended up with a mass choking session with all four of us in various states of distress over some silly thing that somebody had said. These family times are so important to us all, because they serve to lighten the difficult times, and make us stronger as a family too. Long may they continue.
Dinner was followed by a long wallow in the bath for cleo, and after that we enjoyed a nice close evening together once the girls had gone to bed.
Who needs close encounters with the care team anyway, when we can have our own, just me and cleo?
Physio today was hard work for cleo, James giving her a really hard time, pushing her past the pain barrier while working on her arm and shoulder. As he says, he must push her otherwise there will be no benefit. Of course we both know that, but its hard for me to see her cry because of the pain, and I know James doesn't enjoy it when he accidentally goes too far. For cleo too, the pain can be intense, and I have the utmost admiration for her because she keeps going back, knowing that it may hurt, but always driven by her need to get better.
Laughter: the best medicine
Dinner times are quite special in our house. We always hoped that one day we would have the space to sit and eat as a family, which was not really possible in the flat we rented before. When we bought our house last year we were lucky enough to have a large kitchen/diner and throughout the week we all tend to come together as a family for dinner in the evenings. Tonight was no exception, and I had cooked a nice roast. Now one thing we have always done is to laugh, often at the silliest things. At the moment cleo still has a little trouble eating and is apt to choke on her food from time to time. Making her laugh is really not fair, and I can't even remember what it was that made us all laugh tonight but we ended up with a mass choking session with all four of us in various states of distress over some silly thing that somebody had said. These family times are so important to us all, because they serve to lighten the difficult times, and make us stronger as a family too. Long may they continue.
Dinner was followed by a long wallow in the bath for cleo, and after that we enjoyed a nice close evening together once the girls had gone to bed.
Who needs close encounters with the care team anyway, when we can have our own, just me and cleo?
Tuesday, February 21, 2006
Day 93 - Weight and See
After yesterday's rather bad day, mentally and emotionally, cleo seemed far more upbeat today, and was up early. The tiredness she feels that causes her to be in bed early has in a way moved her waking hours somewhat, in that she goes to bed early, gets up early and then is tired again by the evening. However today she was more tired than usual, but there was a good reason for that: this morning while I was out collecting a car from the garage, she cleared up the bedroom, not just a quick tidy, but a good clean up, of which she was rightly proud.
When I got home with the car she was chatting with Emily, the speech therapist, and once Emily was gone we were out to do some shopping before heading to physio with James. James also took some time to explain how cleo might improve her walk a little, as she has concerns about how unsteady she is sometimes. The trick it seems, which we all do without realising, is to stabilise our hips and pelvis: keep the hips straight and the walk becomes stable, allow the hips to twist and the gait is unstable. So it's about remembering all these things, which everyone else does naturally, but which cleo has to re-learn.
Weight is the key
All these "human engineering" ideas are difficult to understand, and even more difficult to put into practise, but they seem to be the key to the whole problem of the improved walk that cleo wants. We talked about this and have agreed that cleo will work on her fitness a little more, and devote time each day to some of these exercises. James said that simply putting weight through the leg is as good a way as any, and he has given cleo some simple things to do which should help both the walk, and her balance.
These exercises , and the simple setting of goals or targets are now crucial to cleos rehabilitation. What I do have to say here is that apart from Emily, the speech therapist the rest of the home care team seem to have faded away into nothing. Since those first couple of visits there has been nothing. I am not sure that we feel we want them in the house all the time but it would be nice to at least have some contact with them. How can we set goals with them if they never talk to us?
Maybe a little reminder from me is needed?
Look out care team!
When I got home with the car she was chatting with Emily, the speech therapist, and once Emily was gone we were out to do some shopping before heading to physio with James. James also took some time to explain how cleo might improve her walk a little, as she has concerns about how unsteady she is sometimes. The trick it seems, which we all do without realising, is to stabilise our hips and pelvis: keep the hips straight and the walk becomes stable, allow the hips to twist and the gait is unstable. So it's about remembering all these things, which everyone else does naturally, but which cleo has to re-learn.
Weight is the key
All these "human engineering" ideas are difficult to understand, and even more difficult to put into practise, but they seem to be the key to the whole problem of the improved walk that cleo wants. We talked about this and have agreed that cleo will work on her fitness a little more, and devote time each day to some of these exercises. James said that simply putting weight through the leg is as good a way as any, and he has given cleo some simple things to do which should help both the walk, and her balance.
These exercises , and the simple setting of goals or targets are now crucial to cleos rehabilitation. What I do have to say here is that apart from Emily, the speech therapist the rest of the home care team seem to have faded away into nothing. Since those first couple of visits there has been nothing. I am not sure that we feel we want them in the house all the time but it would be nice to at least have some contact with them. How can we set goals with them if they never talk to us?
Maybe a little reminder from me is needed?
Look out care team!
Monday, February 20, 2006
Day 92 - Bad Day
It's odd how one's attitude can change over time, even a few short weeks. James told us, when we were only a few weeks into the the recovery time that on average, post stroke recovery continues up to about 90 days post stroke. At that time we were only some 40 odd days into the rehabilitation, and 90 days seemed a long way off. Of course 90 days has come along and cleo must have had that in her sights without telling anyone.
This morning, once the kids had gone off to school and I had taken one of the cars to the garage for some work, I needed to sleep, and cleo came upstairs with me to sit in the bedroom. Without warning she burst into tears. "I don't want to be like this for the rest of my life...." she sobbed, going on to explain that the 90 day mark was past and she still had nothing in her arm or hand. I know that she is very frustrated about this lack of recovery, but just because that 90 days has expired means nothing. However, try telling that to the person concerned.
I guess that everyone who suffers similat kinds of illness or injury goes through those bad days, and it's really up to them to lift themselves. What we as carers must do is give as much support and help as we can, allied to positive attitude. It is a tough thing to deal with for cleo, because she has always been so independent and self-reliant. Now of course much of what she does requires help from someone else, although recently as i have explained in here she has become a little less dependent on others for getting up and down stairs, going to the toilet and such.
By this afternoon she was perked up a bit, which was good and we had fish and chips for dinner, sitting at the kitchen table, where we all had a good laugh at some silly thing that was mentioned. That brightened her up quite a lot, which was good.
The Winter Olympics are on right now, and cleo loves Ice Dance, so this evening it was a nice bath and then up to bed to relax and watch the skating, which she seems to have enjoyed.
Hopefully we won't see too many days when cleo lets the situation get the better of her. To cleo I say "keep fighting girl, I am here by your side always"
This morning, once the kids had gone off to school and I had taken one of the cars to the garage for some work, I needed to sleep, and cleo came upstairs with me to sit in the bedroom. Without warning she burst into tears. "I don't want to be like this for the rest of my life...." she sobbed, going on to explain that the 90 day mark was past and she still had nothing in her arm or hand. I know that she is very frustrated about this lack of recovery, but just because that 90 days has expired means nothing. However, try telling that to the person concerned.
I guess that everyone who suffers similat kinds of illness or injury goes through those bad days, and it's really up to them to lift themselves. What we as carers must do is give as much support and help as we can, allied to positive attitude. It is a tough thing to deal with for cleo, because she has always been so independent and self-reliant. Now of course much of what she does requires help from someone else, although recently as i have explained in here she has become a little less dependent on others for getting up and down stairs, going to the toilet and such.
By this afternoon she was perked up a bit, which was good and we had fish and chips for dinner, sitting at the kitchen table, where we all had a good laugh at some silly thing that was mentioned. That brightened her up quite a lot, which was good.
The Winter Olympics are on right now, and cleo loves Ice Dance, so this evening it was a nice bath and then up to bed to relax and watch the skating, which she seems to have enjoyed.
Hopefully we won't see too many days when cleo lets the situation get the better of her. To cleo I say "keep fighting girl, I am here by your side always"
Day 91 - Tempus Fugit
How times flies. Three months since the stroke, and I can't even begin to assimilate all the changes that have happened, from those initial moments of fright, the tears, the worry, the laughter and so many other emotions too.
Right now, after the wedding we are on a high of course, and the comfort that our marriage brings both of us will continue. In a sense, after all that has gone before we are now much closer as a family, and for me that is the best feeling. The girls have grown up a lot in the last few months, learning little by little to accept more responsibility and to adopt a very mature attitude to all that is happening around them. Of course we all have our stressed moments, that is understandable, but i don't think one would find two better kids in the way they have dealt with everything.
Each day we discover something new about cleo's stroke, in the way it has affected her, or how she is recovering. This weekend we have accepted that there may well be some effects that we had not considered before. cleo remarked to me today that she finds herself more clumsy now, and i think that perhaps that is the case. Furthermore I think that cleo has a problem with concentrating, although i believe this may be improving, and her immersing herself in pc games and some web design will certainly help this.
There are of course the leftover emotional moments but they are far fewer now than they were some weeks ago, and so there is improvement on that score too.
I am still tired, although it's nothing I cannot deal with and a good sleep this week after work will cure most of that.
WE have settled into a routine again, and while its very different of course from what we had before the stroke, I see no reason to believe that we cannot continue to operate as a normal family.
Did I say normal? To paraphrase Sarah's speech at the wedding we have an expensive 11 year old, and even more expensive 17 year old, and an extortionate mother. All three are good at spending money and no wheelchair is going to stop that.
As a family we are not normal, we are unique, and I am proud to be part of it.
Right now, after the wedding we are on a high of course, and the comfort that our marriage brings both of us will continue. In a sense, after all that has gone before we are now much closer as a family, and for me that is the best feeling. The girls have grown up a lot in the last few months, learning little by little to accept more responsibility and to adopt a very mature attitude to all that is happening around them. Of course we all have our stressed moments, that is understandable, but i don't think one would find two better kids in the way they have dealt with everything.
Each day we discover something new about cleo's stroke, in the way it has affected her, or how she is recovering. This weekend we have accepted that there may well be some effects that we had not considered before. cleo remarked to me today that she finds herself more clumsy now, and i think that perhaps that is the case. Furthermore I think that cleo has a problem with concentrating, although i believe this may be improving, and her immersing herself in pc games and some web design will certainly help this.
There are of course the leftover emotional moments but they are far fewer now than they were some weeks ago, and so there is improvement on that score too.
I am still tired, although it's nothing I cannot deal with and a good sleep this week after work will cure most of that.
WE have settled into a routine again, and while its very different of course from what we had before the stroke, I see no reason to believe that we cannot continue to operate as a normal family.
Did I say normal? To paraphrase Sarah's speech at the wedding we have an expensive 11 year old, and even more expensive 17 year old, and an extortionate mother. All three are good at spending money and no wheelchair is going to stop that.
As a family we are not normal, we are unique, and I am proud to be part of it.
Saturday, February 18, 2006
Day 90 - Endurance
As always weekends are hard work, because of being apart. As I have said recently though, I am far more comfortable with my cleo being at home as she is developing a bit more independence regards moving around the house.
cleo has been working on a design for a web page invite for the handfasting, and that should be ready soon; keep an eye on your e-mail inboxes folks!
There is not that much to say about Saturdays (and Sundays for that matter) right now, except that they have to be endured as a means to an end. We can look forward to Monday morning and from there having the week together, which is what makes us both more contented than when we are apart.
cleo has been working on a design for a web page invite for the handfasting, and that should be ready soon; keep an eye on your e-mail inboxes folks!
There is not that much to say about Saturdays (and Sundays for that matter) right now, except that they have to be endured as a means to an end. We can look forward to Monday morning and from there having the week together, which is what makes us both more contented than when we are apart.
Day 89 - Normality.
WE scheduled cleo's physiotherapy early for today, because of my work this evening. Arriving at the hospital at 9.30 am James decided to work on cleos hip and leg stability today. This entailed such exercises and stepping up and down blocks, walking sideways, and maintainign control of the left leg in difficult movements. However, never one to be satisfied James also spent a deal of time working on cleo's arm and shoulder too!
Several times lately he has remarked how much better cleo's walking is, and he seems genuinely enthused about the progress she is making of late. As I pointed out to cleo myself the other day, her progress is best looked at in terms of where she was a few weeks ago, rather than the less easily measured day to day improvements, which are of course far smaller.
WE seem to be getting far better at organising our trips out and about now, which is of course to be expected with experience, but is also a measure of the progress that cleo has made. She can get herself into the car, once she is standing by the door, and that leaves me to put the wheelchair in the boot, making the whole process of in and out far quicker. We have become better in shops and other places with the chair now, and are simply better organised with carrying shopping and bags etc. We received cleo's blue badge for the car this week too, which makes one hell of a difference because we don't have to worry about parking on the street now.
So, physio done, and breakfast in the hospital restaurant over, we came home and relaxed until that time again, when I had to get off to work. That said of course it goes round pretty quickly, and while I don't like leaving cleo at the best of times, i am far happier now than I was a few weeks ago: she can get downstairs, she can have a bath using her special bath seat, and she can even do a few bits in the kitchen. That independence she has developed is good for her, and comforting for me. It creates a semblance of normaility that wasn't there before, and that in itself is a good thing.
Several times lately he has remarked how much better cleo's walking is, and he seems genuinely enthused about the progress she is making of late. As I pointed out to cleo myself the other day, her progress is best looked at in terms of where she was a few weeks ago, rather than the less easily measured day to day improvements, which are of course far smaller.
WE seem to be getting far better at organising our trips out and about now, which is of course to be expected with experience, but is also a measure of the progress that cleo has made. She can get herself into the car, once she is standing by the door, and that leaves me to put the wheelchair in the boot, making the whole process of in and out far quicker. We have become better in shops and other places with the chair now, and are simply better organised with carrying shopping and bags etc. We received cleo's blue badge for the car this week too, which makes one hell of a difference because we don't have to worry about parking on the street now.
So, physio done, and breakfast in the hospital restaurant over, we came home and relaxed until that time again, when I had to get off to work. That said of course it goes round pretty quickly, and while I don't like leaving cleo at the best of times, i am far happier now than I was a few weeks ago: she can get downstairs, she can have a bath using her special bath seat, and she can even do a few bits in the kitchen. That independence she has developed is good for her, and comforting for me. It creates a semblance of normaility that wasn't there before, and that in itself is a good thing.
Thursday, February 16, 2006
Day 88 - Moving On
Physio today with james was spent working on extending cleo's wrist and elbow, to stretch the muscles and to create some more flexibility. James is pleased that the arm has not tightened up too much these last couple of days, and will continue to work on it in the future. I just know that he is going to eventually get a response from cleo's arm or hand.
We also spoke with James about goal setting with the home care team, and it is important that we agree those goals and targets rather than simply accept what they decide is best for us. I have this idea that we ought to call a "meet the team" meeting at home for all the members of the care team so we can all decide whats best. I do not want them making choices on our behalf without us involved.
cleo and I also talked about progress, and how she feels sometimes that she isn't making much right now, but I pointed out that compared to say, 4 weeks ago, she has made huge progress. Daily the improvement may not be noticeable, but if you measure the things she can do now, compared to a few weeks ago, her rehabilitation is moving at a good pace. While she still gets very tired, and while she is still frustrated by her inability to do things, we are learning to overcome that through new techniques.
Sometimes she forgets what she cannot do: tonight for example, she was picking something up from the floor in the kitchen, and fell over. Nothing bad, just a fall onto the carpet, but I see two things in that: a reminder to her to be careful, but also the fact that she will do these things, which in my view is good. If she were not prepared to take those "risks" then she would never improve anyway.
Our planning has turned to the handfasting, and we are already looking at some new ideas since the wedding. More of that later.
We need to keep moving cleos rehab on, and that can only happen if we work at it, and if we push those who are there to help as well, which i am quite happy to do. We know that iof you push hard enough you generally get what you need, which we know from when cleo was in the hospital, and i will continue to do that as long as it takes.
We also spoke with James about goal setting with the home care team, and it is important that we agree those goals and targets rather than simply accept what they decide is best for us. I have this idea that we ought to call a "meet the team" meeting at home for all the members of the care team so we can all decide whats best. I do not want them making choices on our behalf without us involved.
cleo and I also talked about progress, and how she feels sometimes that she isn't making much right now, but I pointed out that compared to say, 4 weeks ago, she has made huge progress. Daily the improvement may not be noticeable, but if you measure the things she can do now, compared to a few weeks ago, her rehabilitation is moving at a good pace. While she still gets very tired, and while she is still frustrated by her inability to do things, we are learning to overcome that through new techniques.
Sometimes she forgets what she cannot do: tonight for example, she was picking something up from the floor in the kitchen, and fell over. Nothing bad, just a fall onto the carpet, but I see two things in that: a reminder to her to be careful, but also the fact that she will do these things, which in my view is good. If she were not prepared to take those "risks" then she would never improve anyway.
Our planning has turned to the handfasting, and we are already looking at some new ideas since the wedding. More of that later.
We need to keep moving cleos rehab on, and that can only happen if we work at it, and if we push those who are there to help as well, which i am quite happy to do. We know that iof you push hard enough you generally get what you need, which we know from when cleo was in the hospital, and i will continue to do that as long as it takes.
Wednesday, February 15, 2006
Day 87 - Tired, but happy.
Afetr all the emotion and excitement of yesterday, we awoke after a less than perfect night's sleep, both still tired, although I am not sure we would admit that.
The girls were staying at a hotel with their uncle last night, and they arrived home about 10am. I had to return the hired suits and cake stand, and the house needed a tidy up.
James at physio this afternoon was surprised, after the wedding and all the walking that cleo had done, that her hand and wrist were not more stiff than they actually were. He spent most of the physio working on the fingers and wrist, and noted a rather stiff single joint in the hand, by the first and second knucle, which he thought it may be worth working some more on, because sometimes a single misplced joint can cause a kind of block that stops other things working (at least that's how i understood what he was saying). Get the blockage out and the whole thing begins to work again.
On the way back from the hospital, to save cooking tonight we bought Macdonalds for the girls.
By 6pm cleo was visibly wilting and we got her in the bath, where she relaxed for nearly an hour. Once done, she needed to sleep, and went off to bed, and has slept since then. Thats some 4 hours now.
I have to say it has been a tiring couple of days, but all the effort was worth it, now we are married. We now need to focus on the handfasting in June.
Now that is going to be a special day!
The girls were staying at a hotel with their uncle last night, and they arrived home about 10am. I had to return the hired suits and cake stand, and the house needed a tidy up.
James at physio this afternoon was surprised, after the wedding and all the walking that cleo had done, that her hand and wrist were not more stiff than they actually were. He spent most of the physio working on the fingers and wrist, and noted a rather stiff single joint in the hand, by the first and second knucle, which he thought it may be worth working some more on, because sometimes a single misplced joint can cause a kind of block that stops other things working (at least that's how i understood what he was saying). Get the blockage out and the whole thing begins to work again.
On the way back from the hospital, to save cooking tonight we bought Macdonalds for the girls.
By 6pm cleo was visibly wilting and we got her in the bath, where she relaxed for nearly an hour. Once done, she needed to sleep, and went off to bed, and has slept since then. Thats some 4 hours now.
I have to say it has been a tiring couple of days, but all the effort was worth it, now we are married. We now need to focus on the handfasting in June.
Now that is going to be a special day!
Tuesday, February 14, 2006
Day 86 - My wife and I...
Big day today.
We were all up early, rushing round like you do, the girls fighting to get in the shower, and breakfast all cooked and eaten before 9am. Rose came round to do the girls', and cleo's hair and worked her magic on Hannah and Sarah, and then on cleo too.
With people coming and going in the house this morning, it was mayhem most of the time, and a few stressed moments were in there too, but we left on time, and arrived at the registry office to be met by many of the guests who had already arrived.
The ceremony was very nicely done, and quite an emotional one too. cleo says she has trouble stopping the tears once she starts, and that happened several times through the proceedings, but she assured me they were tears of joy.
Of course it was also a very tiring day for cleo, and by the time we left the reception at 3.30pm she was shattered. We had arranged to meet her brother for dinner at his hotel this evening, and so a couple of hours sleep at home before helped recharge her batteries for the evening.
I would like to say thank you to everyone for helping to make this a very special day for me and cleo. To Hannah and Sarah, you are the family which i never had before, and while I may be a bit of a grump sometimes I love you both as if you were my own. To all the family and friends who took the time to come along and support us, and who have helped enormously in many ways to make this wedding possible, again we thank you.
Finally I would like to say thank you my cleo, for loving me like you do, i can ask for no more.
Our love for each other is a constant, it runs through everything we do, and everything we are. That will never change.
We were all up early, rushing round like you do, the girls fighting to get in the shower, and breakfast all cooked and eaten before 9am. Rose came round to do the girls', and cleo's hair and worked her magic on Hannah and Sarah, and then on cleo too.
With people coming and going in the house this morning, it was mayhem most of the time, and a few stressed moments were in there too, but we left on time, and arrived at the registry office to be met by many of the guests who had already arrived.
The ceremony was very nicely done, and quite an emotional one too. cleo says she has trouble stopping the tears once she starts, and that happened several times through the proceedings, but she assured me they were tears of joy.
Mr and Mrs
When we were officially pronounced "Mr and Mrs" by the registrar I have to say it was a great moment for me. This woman, a shining example to us all of courage, fighting spirit and determination had dragged herself from paralysis and an inability to talk just 12 weeks ago, through sheer hard work and determination into a radiant and smiling bride. I am so happy that she agreed to marry me, because this day will stay with me always.
The reception was highlighted by Sarah making a wonderful speech to welcome me into their family. Emotional and heartfelt it certainly was and I don't think there was a dry eye in the house as she spoke her words. Well done Sarah! Thank you.
Of course it was also a very tiring day for cleo, and by the time we left the reception at 3.30pm she was shattered. We had arranged to meet her brother for dinner at his hotel this evening, and so a couple of hours sleep at home before helped recharge her batteries for the evening.
I would like to say thank you to everyone for helping to make this a very special day for me and cleo. To Hannah and Sarah, you are the family which i never had before, and while I may be a bit of a grump sometimes I love you both as if you were my own. To all the family and friends who took the time to come along and support us, and who have helped enormously in many ways to make this wedding possible, again we thank you.
Finally I would like to say thank you my cleo, for loving me like you do, i can ask for no more.
Our love for each other is a constant, it runs through everything we do, and everything we are. That will never change.
Valentine's Day &................
Well, as i know MG's log in, and as he didn't blog last night but mainly because today is our wedding day and that this man whom i am about to marry get so little recognition for all he has done for me, i am creeping in here while he sleeps to say my bit for once.
With all my heart i love him, today yes we have to do this legal bit but we don't need a piece of paper to say we love one another, we just do.
i have said to him hundreds of times these past months.. "there are not many men who would have stuck around and dealt with the effect of a stroke on their partner" for which i thank him from the bottom of my heart; MG is everything to me He is my world.. Our D/s is deeper still because of my inabilities, i am an open book , nothing i am can ever be hidden from MG, not that i would ever try to hide (includes the innocent look at this juncture).
but seriously folk.. i really wanted to say to MG.on this our very special day. Thank you my darling, for being there for me, i love you more today than yesterday but not as much as tomorrow, "Oh.. will you be my Valentine please Sir"
i cannot express just what MG has been to me these past months, a tower of strength, a rock, not just to me but to the girls also.. and to the girls i must also say, thank you my darlings for being my babies and for coping so well with all the life-changing events that i have put you through the last few years.. i am so proud of you both.. enjoy this day as much as we shall.. love you all..
Regards
cleo_MG
With all my heart i love him, today yes we have to do this legal bit but we don't need a piece of paper to say we love one another, we just do.
i have said to him hundreds of times these past months.. "there are not many men who would have stuck around and dealt with the effect of a stroke on their partner" for which i thank him from the bottom of my heart; MG is everything to me He is my world.. Our D/s is deeper still because of my inabilities, i am an open book , nothing i am can ever be hidden from MG, not that i would ever try to hide (includes the innocent look at this juncture).
but seriously folk.. i really wanted to say to MG.on this our very special day. Thank you my darling, for being there for me, i love you more today than yesterday but not as much as tomorrow, "Oh.. will you be my Valentine please Sir"
i cannot express just what MG has been to me these past months, a tower of strength, a rock, not just to me but to the girls also.. and to the girls i must also say, thank you my darlings for being my babies and for coping so well with all the life-changing events that i have put you through the last few years.. i am so proud of you both.. enjoy this day as much as we shall.. love you all..
Regards
cleo_MG
Monday, February 13, 2006
Day 84 - 12 weeks on, and 2 days to go!
I am not going to write the same old thing again tonight.. sleep, work, boring, except to say that of course it's 12 weeks since cleo had the stroke, and as I have said before, sometimes it seems an age, and other times it has gone so fast. Our lives have totally changed since then, in many ways.
Simply want to add that its two days till we marry.
I know I won't be any different after we marry except that i will now have a bond with my soulmate that cannot and never will be broken. I feel that my life has been heading towards this moment for a long time now. When I first met my cleo I thought "Yesssss"; that was my first reaction. I love her so much that sometimes it hurts. She is the reason I wake up in the morning, and she puts the smile on my face.
Love you my cleo. More today than yesterday, but not as much as I will tomorrow.
Simply want to add that its two days till we marry.
I know I won't be any different after we marry except that i will now have a bond with my soulmate that cannot and never will be broken. I feel that my life has been heading towards this moment for a long time now. When I first met my cleo I thought "Yesssss"; that was my first reaction. I love her so much that sometimes it hurts. She is the reason I wake up in the morning, and she puts the smile on my face.
Love you my cleo. More today than yesterday, but not as much as I will tomorrow.
Saturday, February 11, 2006
Day 83 - Anticipation..
As always, Saturday is a nothing day really, with getting home in the morning from work, and trying to get some sleep before work again on Saturday night, virtually everything goes by the board. That's how it was today with one very notable exception.
I arrived home at 8am this morning and Sarah was waiting for a lift to work, which is only 5 minutes drive, so without coming into the house I took her to work, returning about 8.15. When i got to the house the front door was open, and as I walked in I heard sizzling from the kitchen. You guessed, cleo was up, and downstairs cooking breakfast. She looked so pleased with herself for doing that, with a great big smile all over her face. We sat in the kitchen eating breakfast, and chatting for an hour before I went to sleep.
Nice one girl!
Of course the anticipation is building for Tuesday and it's the main thought in all our minds right now. Two more nights at work and then we can all focus on the wedding.
I am sure it will be a great day and I am looking forward to being able to say cleo is my wife; it will be the culmination of four and a half tough years, not least the last 3 months. Roll on Tuesday.
I arrived home at 8am this morning and Sarah was waiting for a lift to work, which is only 5 minutes drive, so without coming into the house I took her to work, returning about 8.15. When i got to the house the front door was open, and as I walked in I heard sizzling from the kitchen. You guessed, cleo was up, and downstairs cooking breakfast. She looked so pleased with herself for doing that, with a great big smile all over her face. We sat in the kitchen eating breakfast, and chatting for an hour before I went to sleep.
Nice one girl!
Of course the anticipation is building for Tuesday and it's the main thought in all our minds right now. Two more nights at work and then we can all focus on the wedding.
I am sure it will be a great day and I am looking forward to being able to say cleo is my wife; it will be the culmination of four and a half tough years, not least the last 3 months. Roll on Tuesday.
Day 82 - Getting the needle!
This morning it was early to the hospital for physio with James. Primarily this was work on the shoulder and hand. I have to say that James has certainly not given up the idea of getting something back into cleo's hand and fingers, but we are resigned to it being a very long job. We did have a call yesterday from the home care physio and we discussed a few ideas with James about where this might go. He suggested that goals should be set by cleo, and not the physio, because they are OUR goals not theirs. I asked james if we would not see him once the home care physios took over, and he said that was not the case. he will continue to see cleo, which we are very pleased about. His view is that the home care team are there to resolve specific issues relating to being at home, and his role is that of a specialist neurophysiotherapist. cleo still has much to gain from James and so we continue to see him as well. That's good news!
So, once home we had one job that needed doing before I went to work, which should have been a simple one, but these things never are, are they..... ?
Hannah's dress for the wedding needed the hem taking up, as it was far too long. Now, cleo is great with a sewing machine and needle and thread, but of course that was before the stroke. So, with her directing I thought I would sort the problem. I am normally OK with a bit of simple sewing, seams and buttons, but this time, I just couldn't get the thing right. cleo was frustrated because she knew she could have done it in 5 minutes, iwas frustrated because i couldn't get it right, and we didn't know who else to ask. It all got a bit stressed, and still we hadn't sorted the dress. I even went and asked a couple of neighbours: cleo being convinced that most "housewives" ought to be able to sew a hem like she could...not to be. I couldn't find anyone who would admit to being able to do this.
At the same time the home care physio guy turned up. He wanted to start seeing cleo walk up and down stairs and go over all the things that he ought to know already from the notes he had. He must have thought he had walked into a madhouse, and when he asked the question"do you do any exercises on a daily basis?" cleo snapped at him "Trying to live a normal life is more exercise than anything the hospital can do" Frankly he didn't stay long after that.
And still the dress wasn't done!
Enter our friend Rose, who is going to be a witness at the wedding. She is a very good friend who lives in Wales, and is coming on Monday to stay and have dinner with us that evening. On Tuesday she is going to help cleo get dressed for the wedding and do her hair and stuff. Now Rose is one of those dependable types who, like cleo can turn her hand to pretty much anything. I made a frantic phone call, and she called me back saying "Don't worry, when we come round on Monday night, we will sort the dress" Simple as that. Thank God for good friends!
Rose, I owe you one, and dinner's on me!
So now its work, and just the weekend to get out the way before our big day. Can't wait!
So, once home we had one job that needed doing before I went to work, which should have been a simple one, but these things never are, are they..... ?
Hannah's dress for the wedding needed the hem taking up, as it was far too long. Now, cleo is great with a sewing machine and needle and thread, but of course that was before the stroke. So, with her directing I thought I would sort the problem. I am normally OK with a bit of simple sewing, seams and buttons, but this time, I just couldn't get the thing right. cleo was frustrated because she knew she could have done it in 5 minutes, iwas frustrated because i couldn't get it right, and we didn't know who else to ask. It all got a bit stressed, and still we hadn't sorted the dress. I even went and asked a couple of neighbours: cleo being convinced that most "housewives" ought to be able to sew a hem like she could...not to be. I couldn't find anyone who would admit to being able to do this.
At the same time the home care physio guy turned up. He wanted to start seeing cleo walk up and down stairs and go over all the things that he ought to know already from the notes he had. He must have thought he had walked into a madhouse, and when he asked the question"do you do any exercises on a daily basis?" cleo snapped at him "Trying to live a normal life is more exercise than anything the hospital can do" Frankly he didn't stay long after that.
And still the dress wasn't done!
Enter our friend Rose, who is going to be a witness at the wedding. She is a very good friend who lives in Wales, and is coming on Monday to stay and have dinner with us that evening. On Tuesday she is going to help cleo get dressed for the wedding and do her hair and stuff. Now Rose is one of those dependable types who, like cleo can turn her hand to pretty much anything. I made a frantic phone call, and she called me back saying "Don't worry, when we come round on Monday night, we will sort the dress" Simple as that. Thank God for good friends!
Rose, I owe you one, and dinner's on me!
So now its work, and just the weekend to get out the way before our big day. Can't wait!
Thursday, February 09, 2006
Day 81 - Let them eat cake...
James was fully booked today, so we had no physio scheduled, but that was a good thing as there were a few things to tie up regards the wedding next week. Once the girls had gone to school we had breakfast of boiled eggs and toast, our favourite.
Shopping needed doing before the weekend, which looms large on the horizon and the dreaded work again. While out we bought a lovely two tier white iced wedding cake, along with all the trimmings to decorate it, and hired a nice stand for it as well. I can't believe how these supermarkets can produce stuff like this at the prices they do? The trimming and stand hire cost more than the two tiers of the cake! Anyway, everyone can get a piece, and there might even be some left over for me!
We visited the place where the reception is booked, paid the balance, and had lunch as well!
Finally, as tradition suggests, the bridesmaids ought to receive a present from the bride and groom and we bought Sarah and Hannah a little silver cross and chain each to wear next tuesday, as a memento of the day.
Back home this afternoon i had promised to cook a roast dinner, which i did, and we all sat down and enjoyed it. Cleo finally "hit the wall" just after 8pm when she struggled up to bed and was soon asleep. Still, we had had a pretty busy day.
Shopping needed doing before the weekend, which looms large on the horizon and the dreaded work again. While out we bought a lovely two tier white iced wedding cake, along with all the trimmings to decorate it, and hired a nice stand for it as well. I can't believe how these supermarkets can produce stuff like this at the prices they do? The trimming and stand hire cost more than the two tiers of the cake! Anyway, everyone can get a piece, and there might even be some left over for me!
We visited the place where the reception is booked, paid the balance, and had lunch as well!
Finally, as tradition suggests, the bridesmaids ought to receive a present from the bride and groom and we bought Sarah and Hannah a little silver cross and chain each to wear next tuesday, as a memento of the day.
Back home this afternoon i had promised to cook a roast dinner, which i did, and we all sat down and enjoyed it. Cleo finally "hit the wall" just after 8pm when she struggled up to bed and was soon asleep. Still, we had had a pretty busy day.
Wednesday, February 08, 2006
Day 80 - G'day Mate!
A speech therapist who doesn't say much, it's a bit of an oxymoron, but it's true. We had a visit from the care team speech therapist (Emily) whom I had not met before as I was out when she called last week. Still, at least when she spoke she had a nice "Queen's English" accent, very well spoken. That in itself was more comforting than the speech therapist who visited cleo when she was in the hospital. She was, believe it or not, Australian. Now, I ask you, how on earth can someone who sounds like they just walked out of Ramsay Street (G'day mate, how the drongo are ya?, wanna tinny before you visit the dunny?) possibly improve the speech of someone in England? So, on that score the community care team wins out!
Main event of today was the delivery of the promised bath seat; an ingenious battery-powered device able to lower and raise a person into and out of the bath. This evening cleo was duly lowered into a hot bath, and then, because she is never satisfied she wanted to slide off the seat which was then removed so she could lounge in the bath as usual. I am sure that that's not quite how its supposed to happen, but hey, who are we if not ingenious? We did all that, and then managed to get her back on the seat to lift her out of the bath. At least my back needn't suffer any more.
Physio this afternoon, and I left cleo there while I went and did some shopping, after which she tells me James had her walking on a treadmill (first time) which I would love to have seen, and to have had access to the speed control (evil grin).
Tomorrow we are off out to do some final shopping for next Tuesday, and to finalise the menu at the reception venue. Hopefully by tomorrow evening the arrangements for Tuesday will all be completed.
Main event of today was the delivery of the promised bath seat; an ingenious battery-powered device able to lower and raise a person into and out of the bath. This evening cleo was duly lowered into a hot bath, and then, because she is never satisfied she wanted to slide off the seat which was then removed so she could lounge in the bath as usual. I am sure that that's not quite how its supposed to happen, but hey, who are we if not ingenious? We did all that, and then managed to get her back on the seat to lift her out of the bath. At least my back needn't suffer any more.
Physio this afternoon, and I left cleo there while I went and did some shopping, after which she tells me James had her walking on a treadmill (first time) which I would love to have seen, and to have had access to the speed control (evil grin).
Tomorrow we are off out to do some final shopping for next Tuesday, and to finalise the menu at the reception venue. Hopefully by tomorrow evening the arrangements for Tuesday will all be completed.
Tuesday, February 07, 2006
Day 79 - Trade Off
CLEO is finding herself very tired these days. Now, i have thought very carefully about this, and have drawn some conclusions based on perhaps a little science, and some common sense logical thought too. More of that later.
Her sleeping patterns never were very good, and now they are even more odd. Because she sleeps from early in the evening, after hitting the "wall" (as I have mentioned previously) that causes her to wake early, sometimes 5am like today, which then creates a need to sleep earlier in the day, and so on. A self-perpetuating circle. So on days like today, when she had a very tiring session with James the physiotherapist that adds to the fatigue.
In physio James spent time looking at knee and hip mobility, and worked cleo really hard. He was trying to see to what degree she could do relatively complicated tasks, like control of leg and knee, on a gym ball, and at what point her hand would tighten up, because that is a measure of the ability she has to perform those tasks. According to him she did exceptionally well, although as he made the exercises harder and harder her hand and fingers did become tight, and closed up. What he did say though is that the control is there, and it's coming back, bit by bit.
Suddenly her foot moved, and it was not involuntarily either. James had asked her to move it, and it moved. Smiles all round, because that was a first. I sat there, watching, pleased as punch. Oh God, I hope the home physio is as good as this guy (no chance!), because I am not going to let someone else without the obvious expertise and knowledge that James has, spoil all his hard work. I think he was genuinely pleased too, to see that response from her foot. Another obstacle overcome in the Road to Recovery.
As I mentioned earlier, this hard work allied to the daily activity cleo is doing now makes her tired. I believe that the tiredness is caused to some extent not just through physical activity but by the body's natural repair systems working so hard to make her well again. If that means that for some weeks or months she is tired all the time, but her rehabilitation is speeded up, then i take the tired every time.
I all things there has to be a trade-off and the tiredness is the price that cleo must pay for the fact that her recovery is moving at a good pace. She is a naturally impatient person and i know that she is frustrated with still not being able to do certain things, but having said that i am also convinced that her common sense will tell her that she must give her body every chance to recover, and if sleeping extra hours, and feeling tired is that answer then so be it.
Her sleeping patterns never were very good, and now they are even more odd. Because she sleeps from early in the evening, after hitting the "wall" (as I have mentioned previously) that causes her to wake early, sometimes 5am like today, which then creates a need to sleep earlier in the day, and so on. A self-perpetuating circle. So on days like today, when she had a very tiring session with James the physiotherapist that adds to the fatigue.
In physio James spent time looking at knee and hip mobility, and worked cleo really hard. He was trying to see to what degree she could do relatively complicated tasks, like control of leg and knee, on a gym ball, and at what point her hand would tighten up, because that is a measure of the ability she has to perform those tasks. According to him she did exceptionally well, although as he made the exercises harder and harder her hand and fingers did become tight, and closed up. What he did say though is that the control is there, and it's coming back, bit by bit.
Suddenly her foot moved, and it was not involuntarily either. James had asked her to move it, and it moved. Smiles all round, because that was a first. I sat there, watching, pleased as punch. Oh God, I hope the home physio is as good as this guy (no chance!), because I am not going to let someone else without the obvious expertise and knowledge that James has, spoil all his hard work. I think he was genuinely pleased too, to see that response from her foot. Another obstacle overcome in the Road to Recovery.
As I mentioned earlier, this hard work allied to the daily activity cleo is doing now makes her tired. I believe that the tiredness is caused to some extent not just through physical activity but by the body's natural repair systems working so hard to make her well again. If that means that for some weeks or months she is tired all the time, but her rehabilitation is speeded up, then i take the tired every time.
I all things there has to be a trade-off and the tiredness is the price that cleo must pay for the fact that her recovery is moving at a good pace. She is a naturally impatient person and i know that she is frustrated with still not being able to do certain things, but having said that i am also convinced that her common sense will tell her that she must give her body every chance to recover, and if sleeping extra hours, and feeling tired is that answer then so be it.
Day 78 - Surprise.
After work last night I drove home knowing we had the whole week ahead, and while there is lots to do, we can do these things together, and all the time we are together, we are OK. That's how we are.
Physio with James was booked for 9.00 am so no chance to sleep till later. We set off after the girls had gone to school, and James worked again on cleos arm: he was pleased to note that there was more flexibility in the elbow, as a result of cleo working on her arm all weekend. I think most of the battle is simply about perseverance. If you work on it all the time it will improve, and for us the main focus right now is not to let the arm and hand become claw-like and immobile. Even hannah has asked to be involved in this, and she is going to help her mum manipulate the hand, and wrist to keep it supple, which of course will help, and also allows her to feel more involved. That too is very important.
Once we had finished physio, we stayed at the hospital and had breakfast in the canteen which was nice. Then it was home for a sleep, until early evening when cleo had started cooking dinner on her own till I got up to help her. I
Now, before she had the stroke, whenever i got home from work, especially in the mornings after a night shift, cleo would always meet me at the door; it was a kind of ritual we had. Since 21st November of course that has not been possible. When I got home this morning, I called upstairs and, getting no answer, I thought she was asleep. The girls were both in their rooms getting ready for school so I thought I would make a cup of tea before going upstairs. Walking into the kitchen I heard a little voice from the bathroom: "Are you here already?" Cleo had come down the stairs with Sarah's help and was planning to meet me at the door, but I had got home a few minutes too early, and caught her in the toilet! Still that didn't matter. It was a wonderful surprise that she was up, dressed and downstairs.
Thank you my dear cleo.
Physio with James was booked for 9.00 am so no chance to sleep till later. We set off after the girls had gone to school, and James worked again on cleos arm: he was pleased to note that there was more flexibility in the elbow, as a result of cleo working on her arm all weekend. I think most of the battle is simply about perseverance. If you work on it all the time it will improve, and for us the main focus right now is not to let the arm and hand become claw-like and immobile. Even hannah has asked to be involved in this, and she is going to help her mum manipulate the hand, and wrist to keep it supple, which of course will help, and also allows her to feel more involved. That too is very important.
Once we had finished physio, we stayed at the hospital and had breakfast in the canteen which was nice. Then it was home for a sleep, until early evening when cleo had started cooking dinner on her own till I got up to help her. I
Now, before she had the stroke, whenever i got home from work, especially in the mornings after a night shift, cleo would always meet me at the door; it was a kind of ritual we had. Since 21st November of course that has not been possible. When I got home this morning, I called upstairs and, getting no answer, I thought she was asleep. The girls were both in their rooms getting ready for school so I thought I would make a cup of tea before going upstairs. Walking into the kitchen I heard a little voice from the bathroom: "Are you here already?" Cleo had come down the stairs with Sarah's help and was planning to meet me at the door, but I had got home a few minutes too early, and caught her in the toilet! Still that didn't matter. It was a wonderful surprise that she was up, dressed and downstairs.
Thank you my dear cleo.
Monday, February 06, 2006
Day 77 - Busy Week Ahead
Another milestone this evening: actually borne out of the fact that i was on my way to work. Cleo wanted to get downstairs, and with Sarah's help she did this for the first time without my being there. All these little things are so important because they build up to much bigger things. Each step is a major leap towards more independence for cleo, something which is so important.
This coming week promises to be a busy one, with arrangements in hand for the wedding on the 14th, and lots to do, as well as physiotherapy, and delivery on Wednesday of the bath seat promised by social services. We also have to go to the place where we have arranged the reception after the registry wedding to organise the final menu for the buffet; again it's all about fitting things into a very hectic schedule.
cleo seems much more settled this last week or two, and I suppose thats as much to do with the upcoming wedding, and having lots to do, as it is with being at home.
WE are 11 weeks into the Road to Recovery and I am still amazed at the speed of cleo's recovery: anyone who had seen her that first few days after the stroke would never have guessed this is the same person. More power to her for that!
This coming week promises to be a busy one, with arrangements in hand for the wedding on the 14th, and lots to do, as well as physiotherapy, and delivery on Wednesday of the bath seat promised by social services. We also have to go to the place where we have arranged the reception after the registry wedding to organise the final menu for the buffet; again it's all about fitting things into a very hectic schedule.
cleo seems much more settled this last week or two, and I suppose thats as much to do with the upcoming wedding, and having lots to do, as it is with being at home.
WE are 11 weeks into the Road to Recovery and I am still amazed at the speed of cleo's recovery: anyone who had seen her that first few days after the stroke would never have guessed this is the same person. More power to her for that!
Sunday, February 05, 2006
Day 76 - Not enough time
I hate weekends! Yes I know I have said it loads of times before, but it bears saying again. Today, I got home at 8am, after having to negotiate a huge (30 mile) detour on the way home because the A2 trunk road was closed. We had breakfast and by 9.30 I was asleep. cleo woke me about 3pm, and then it was out the door again by 4pm, and back to work.
This is the problem with a job that requires 12 hour shifts, and is also 1½ hours travelling time from home. Even though I only work three nights I feel terribly guilty that cleo is left all that time at home. She suffers in silence mostly, and we accept that it must happen, but it still hurts, and I am sure we both wish that there were another way. When we decided to come downstairs this morning for breakfast, knowing I had to sleep, cleo started to walk down the stairs, with my help, and a few steps down she opted to do the rest on her backside. The process of walking downstairs is quite slow right now, and she certainly feels the strain in her right leg, knee and hips. I guess it's about working at it, and strengthening the muscles that are out of practise, as well as becoming better at distributing weight more evenly. That of course will come with time, but I know that she feels very unsteady, and rather precarious at the top of the stairs, having to step down onto her bad leg (which is how it's done, or you cannot support yourself on your good leg as you step).
It is very difficult for us to realise how much of a strain it must be for cleo, every movement is an effort, and I am sure that is one of the reasons she gets so tired. there are simply not enough hours in each day to allow us more time together.
This is the problem with a job that requires 12 hour shifts, and is also 1½ hours travelling time from home. Even though I only work three nights I feel terribly guilty that cleo is left all that time at home. She suffers in silence mostly, and we accept that it must happen, but it still hurts, and I am sure we both wish that there were another way. When we decided to come downstairs this morning for breakfast, knowing I had to sleep, cleo started to walk down the stairs, with my help, and a few steps down she opted to do the rest on her backside. The process of walking downstairs is quite slow right now, and she certainly feels the strain in her right leg, knee and hips. I guess it's about working at it, and strengthening the muscles that are out of practise, as well as becoming better at distributing weight more evenly. That of course will come with time, but I know that she feels very unsteady, and rather precarious at the top of the stairs, having to step down onto her bad leg (which is how it's done, or you cannot support yourself on your good leg as you step).
It is very difficult for us to realise how much of a strain it must be for cleo, every movement is an effort, and I am sure that is one of the reasons she gets so tired. there are simply not enough hours in each day to allow us more time together.
Saturday, February 04, 2006
Day 75 - A Good Feeling
Today's post is more about us, than just cleo, for two reasons.
Firstly, we are becoming more used to the limitations of what cleo can do, and as such our teamwork is getting better. We have always worked better as a team, and so it is again, working on such "mundane" stuff as household bills and finances, housework itself, and general day to day things. We are creating our own ways of doing things, and whether they are considered the right way by others, if they work for us, that's the main thing.
I have to add in here too that the girls are an important part of this too, Sarah spent ages ironing, and even told her mum off for interfering with her laundry system!
As I mentioned in an earlier post, it is these moments of normality which give a lift to the rehabilitation because in truth our lives have been far from normal since the stroke, and as we get more and more of these moments we are getting back on course.
Secondly, we have confirmed the arrangements for the handfasting ceremony in June. The venue is fantastic, and exactly the right place for what we want. The atmosphere and feel of Salmestone Grange is perfect. It promises to be a spectacular and very memorable day.
Firstly, we are becoming more used to the limitations of what cleo can do, and as such our teamwork is getting better. We have always worked better as a team, and so it is again, working on such "mundane" stuff as household bills and finances, housework itself, and general day to day things. We are creating our own ways of doing things, and whether they are considered the right way by others, if they work for us, that's the main thing.
I have to add in here too that the girls are an important part of this too, Sarah spent ages ironing, and even told her mum off for interfering with her laundry system!
As I mentioned in an earlier post, it is these moments of normality which give a lift to the rehabilitation because in truth our lives have been far from normal since the stroke, and as we get more and more of these moments we are getting back on course.
Secondly, we have confirmed the arrangements for the handfasting ceremony in June. The venue is fantastic, and exactly the right place for what we want. The atmosphere and feel of Salmestone Grange is perfect. It promises to be a spectacular and very memorable day.
Friday, February 03, 2006
Day 74 - A Load of Hot Air
We managed to get a day today when we didn't have to go out anywhere. James was unavailable for physio and Ann Lewis from the Stroke association came to visit this morning.
At 1.30 the OT technician arrived to fit the second bannister, which was duly completed in under an hour. We also had a call from social services saying they had a hydraulic bath seat for us as recommended by Doug (remember him) from the care team. Seems the whole thing went through pretty quickly, and they are coming to install next wednesday.
So, for the first time in a while cleo managed to get a couple of hours sleep this afternoon, continental style. After her siesta, she was refreshed, and we had pizza for tea with the girls.
By 7.30 cleo was still wide awake, and hadn't hit "the wall", which was good. As the dreaded weekend looms with me having to work, cleo wanted a shower and so we decided to do that this evening. Now our bathroom is at the back of the house, and can best be described as "in the garden". I guess that when the house was built that bathroom was not there, and was added at a much later date. It's effectively an extension that is simply a brick box, with little or no insulation. Consequently when the weather is cold, so is the bathroom. there is a radiatoir there from the central heating but it still doesn't get very warm in the bathroom.
Between the door from the kitchen and the bathroom there is a small utility type area, and our washing machine and tumble dryer are located there. The tumble dryer creates huge amounts of heat while drying clothes that seems wasted. There is a sort of venting system that had never been fitted to the dryer to carry that warm air away. This is simply a fascia and tube that attaches to the front of the dryer. I decided to fit the pipe tonight, and ran it through to the bathroom door where, once the tumble dryer was on produced volumes of warm air into the bathroom. In about 10 minutes the bathroom was noticeably warmer than before.
On getting into and out of the shower cleo was far more comfortable than previously, as its now far less cold in the bathroom. This should also help when she is in the bath too.
Once showered she was tired, and so at about 9.30 she went to bed, but that was a far better time than the 7.30 of recent days. We definitely need to look at this sleep in the afternoon idea.
Having done some of the exercises suggested by the speech therapist cleo found her face lesss numb this afternoon, which is a good sign; if a day's exercises can do that, a few weeks worth should have her mouth and cheek back to normal.
Having slept after the bannister was fitted we then tried the descent of the stairs, and clkeo got down them for the first time without coming down on her backside as she has since she came home. Another milestone, even though she is still too nervous to attempt this onher own without someone there, but again, it's another major achievement, and one that we can work on for the future.
At 1.30 the OT technician arrived to fit the second bannister, which was duly completed in under an hour. We also had a call from social services saying they had a hydraulic bath seat for us as recommended by Doug (remember him) from the care team. Seems the whole thing went through pretty quickly, and they are coming to install next wednesday.
So, for the first time in a while cleo managed to get a couple of hours sleep this afternoon, continental style. After her siesta, she was refreshed, and we had pizza for tea with the girls.
By 7.30 cleo was still wide awake, and hadn't hit "the wall", which was good. As the dreaded weekend looms with me having to work, cleo wanted a shower and so we decided to do that this evening. Now our bathroom is at the back of the house, and can best be described as "in the garden". I guess that when the house was built that bathroom was not there, and was added at a much later date. It's effectively an extension that is simply a brick box, with little or no insulation. Consequently when the weather is cold, so is the bathroom. there is a radiatoir there from the central heating but it still doesn't get very warm in the bathroom.
Between the door from the kitchen and the bathroom there is a small utility type area, and our washing machine and tumble dryer are located there. The tumble dryer creates huge amounts of heat while drying clothes that seems wasted. There is a sort of venting system that had never been fitted to the dryer to carry that warm air away. This is simply a fascia and tube that attaches to the front of the dryer. I decided to fit the pipe tonight, and ran it through to the bathroom door where, once the tumble dryer was on produced volumes of warm air into the bathroom. In about 10 minutes the bathroom was noticeably warmer than before.
On getting into and out of the shower cleo was far more comfortable than previously, as its now far less cold in the bathroom. This should also help when she is in the bath too.
Once showered she was tired, and so at about 9.30 she went to bed, but that was a far better time than the 7.30 of recent days. We definitely need to look at this sleep in the afternoon idea.
Having done some of the exercises suggested by the speech therapist cleo found her face lesss numb this afternoon, which is a good sign; if a day's exercises can do that, a few weeks worth should have her mouth and cheek back to normal.
Having slept after the bannister was fitted we then tried the descent of the stairs, and clkeo got down them for the first time without coming down on her backside as she has since she came home. Another milestone, even though she is still too nervous to attempt this onher own without someone there, but again, it's another major achievement, and one that we can work on for the future.
Wednesday, February 01, 2006
Day 73 - Homework
Today saw one of the first real pieces of the wedding jigsaw fall into place, cleo going to the nail bar to have those christmas talons changed for wedding ones. Purple and silver creations that took nearly two hours to do, making us 15 minutes late for physio at lunchtime! (click the picture for an enlarged view)
I have to say that the girl who does cleo's nails is an absolute artist but can she talk. Of that 2 hours I would estimate that 50% at least is chat. Still thats what it's about I guess.
We have agreed with James that we will pursue some specific exercises at home on a daily basis. While cleo gets regular practise at walking just by moving about, her arm and hand are more problematic. Because they are immobile, and because they are not being used, the wrist and hand is prone to soreness, and shortening of the muscles. This causes the wrist to bend, bringing the hand into a "claw" like position. Our aim is that even if ( and we really don't know yet) cleo gets no movement in her hand or forearm that she will at least have a wrist that does not create that claw hand. This is achieved by daily stretching exercises.
We will follow james' instructions in this respect, and hopefully improve the muscle length in the arm, at the wrist and shoulder, remove the soreness and pain that is there, and maybe even induce conditions more conducive to movement.
WE will set aside at least one hour each day to do exercises designed to help movement, and supplenes in cleos wrist and arm. As well as this we bought one of those large balls that are used in physio gymnasiums, which is pumped up now, and which James has used with cleo several times. With one at home we can also work on her leg strength and control too.
It is important to try and get some movement and control in her toes too, because toes are important for balance. Our balance is achieved in several ways, all working together including processing visual stimuli, a gyroscope type function within our ears (thats why you feel dizzy when you have an ear infection) and muscle control within the body, including the feet and toes.
cleo is determined that she will get back her walk ( she has a great walk, very sexy, and very provocative), and I am determined to help her do it.
I am sure we will succeed.
This afternoon saw a first visit from the speech therapist, who has left cleo with some specific exercises to help the numbness in her face: cleo describes this as like the effect after having had an injection at the dentist, when the feeling is coming back but you have less than full control of the tongue or cheek muscles. This is what creates the slight slur in her voice now. Having tried the exercises just this afternoon she said that she felt a slight improvement in her face even after that one attempt. She can work on these whenever she has a few moments to spare, and I am sure that these will help.
The next few weeks are going to be more about the work we do at home, than what we get from the hospital I think, and we need to set goals, and targets for ourselves. We must adhere to what we have agreed, and not give up if we see little or no improvement. It is really about perseverance.
We still await the visit from the core team physio.
Day 72 - Hitting the Wall
Much like long distance runners, who are pushing themselves to, and then through a limit of endurance, i am seeing very much the same in my cleo of late. By early evening she finds that she is very tired, and needs to sleep. Of course i fully understand; her body is recovering from major trauma, and is further tired by the fcat that many of her muscles are working extra hard to compensate for those that are still paralysed, and she is also expending a lot of emotional and nervous energy working at improving and quickening her rehabilitation. I am sure i would be damn tired too.
She tends to wake quite early in the mornings, and therefore by early evening she is beginning to feel the tiredness creeping up on her.
Today we were out just before 10am, off to the Hairdressers. Two hours later cleo was back as a blonde again! All the plum colour that went into her hair just before the stroke was stripped out, and a blonde colour added, along with a really nice cut. She looks fab!
After this it was straight to physio at 1pm, and home after that. James worked on hip stability, and knee and foot control. All these things will enable cleo to walk better. What we do realise now is that these things do not happen quickly, and I think we might be talking a year till she can be confident about walking on her own. That is purely my gut instinct, but I am expecting nothing better: if she is walking well next Christmas i will be more than pleased!
We had a call from the "core care team" today too. A speech therapist is coming to see cleo tomorrow afternoon. Hopefully she may help improve the slight slur and stutter that cleo still has left from the stroke.
We shall see.
She tends to wake quite early in the mornings, and therefore by early evening she is beginning to feel the tiredness creeping up on her.
Today we were out just before 10am, off to the Hairdressers. Two hours later cleo was back as a blonde again! All the plum colour that went into her hair just before the stroke was stripped out, and a blonde colour added, along with a really nice cut. She looks fab!
After this it was straight to physio at 1pm, and home after that. James worked on hip stability, and knee and foot control. All these things will enable cleo to walk better. What we do realise now is that these things do not happen quickly, and I think we might be talking a year till she can be confident about walking on her own. That is purely my gut instinct, but I am expecting nothing better: if she is walking well next Christmas i will be more than pleased!
We had a call from the "core care team" today too. A speech therapist is coming to see cleo tomorrow afternoon. Hopefully she may help improve the slight slur and stutter that cleo still has left from the stroke.
We shall see.
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