Day 71 - DIY Physio

There is a lot to be said for normality. The last couple of months or so, we can honestly say that we have had little normality in our lives. Today felt just a little more normal again. Hannah is having a friend to stay over tomorrow night, and Sarah is off to see some band I have never heard of in London. These normal "family" things make me feel much closer to how we were, and I am sure cleo feels the same. The fact that the girls are beginning to do their own things again is good for them, and for us too.

Today started early, with my getting home from work about 8am, and no chance to rest, as we had physio at 9.00 with James. Arriving at the rehab gym James had hardly started working on cleo's arm when he got a call from the hospital car park: he was having a new windscreen fitted to his car, and they had turned up so he had to go off and sort the repair guy. This took some 30 minutes during which time I manipulated cleo's hand and wrist. On his return James continued working on the hand and he says he is still hopeful of a response in the hand and lower arm, but at the moment nothing has happened. What is interesting is that since friday when the ring was cut off of cleo's finger, her hand and wrist has been so much more relaxed. James thinks the pressure of the ring might have been causing a pain induced reaction, making the whole hand sensitive. It certainly is better now, that's for sure

This must be the new NHS regime. Get the patient in, and allow them to self administer treatment: far cheaper, and great for staff costs! Seriously though, over the past few weeks I have learned quite a lot about how to manipulate muscles and joints safely, and this will of course stand us in good stead in the future. While we were there we managed to talk with one of the OT staff, and mentioned that we were still waiting for the bannister to be fitted at home. Funny how sometimes these things work, because not 2 hours later we get a call from the technician. The bannister is being fitted on Thursday.

Tomorrow we are at the hairdressers: cleo is going blonde again. This will make her feel better i am sure, because it takes us back to before the stroke, and will of course make her look so much better too.

Day 70 - 10 weeks...

TEN weeks into cleo's Road to Recovery, and sometimes it seems that the time has flown by, while there are also times when it seems like an age. I suppose that when the stroke happened we all became very tied up with the daily hospital visits along with the preparations for Christmas. There just didn't seem enough time in the days to get all the things done that needed doing. Now when i look back on the last 10 weeks it seems so far away, that morning in November when cleo had the stroke. Some of the memories that I thought would remain vividly in my mind seem to have faded somewhat, receeding into the daily rounds that have taken over of physiotherapy, and adjusting to living in what we must admit is a very different way compared to before.

One of the things which strikes me the most is how organised we have to be now; how much more "planned" things have to be. cleo and i are very impulsive people, we would simply jump into the car and go shopping, fitting in all sorts of things around the day, and generally flying about. Not so any more. To go shopping has to be planned, and time has to be allowed, for getting cleo into and out of the car.

We always liked to do things together, rarely spending time apart except when I was at work, and even now we try not to, although there are times when I have to go out and get shopping or do other things which mean we cannot always go together. I find this very frustrating, because I feel guilty if I have to leave her at home, even for a few minutes. I know cleo feels the same, because neither of us enjoys being away from the other.

This coming week heralds the start of the supposed home visiting from the care team. My first impressions of the way these teams want to manage their visiting seems based upon the fact that a large percentage (how many i don't know) of their patients (clients/customers, call them what you will) are housebound or too old to go out much. Many of these people are probably very happy to have visitors every day. In our case of course we are different: the care team will need to fit in around us, and I am sure that we will have some clashes with them in this respect over the coming months.

"Hello, I just wanted to let you know I am popping round this afternoon to check on your ability to make tea. Can you remember how to make tea?"
"Sorry, you can't, I won't be here"
"Oh, but I need to come and visit you. Any particular reason why I can't?"
"Yes. I am getting married today...."
"Oh.. OK, I'll call tomorrow then, and we'll do some walking stick aerobics"
"What about the tea making?"
"Oh no, we only do tea on tuesdays"

Yes, I know its a slightly cynical view, but thats sort of how it is, isn't it.

I suppose that as cleo becomes slightly more independent, and we (the family) become better equipped at organising ourselves around her needs and abilities, the need for outside intervention becomes less and less. Eventually, we may even come to resent the intrusion, but I hope that won't happen. We will need to manage the care team to suit our needs rather than the other way round.

And finally I will leave you all with a thought:

"A crisis allows us the opportunity to dig deep into the reservoirs of our very being, to rise to levels of confidence, strength, and resolve that otherwise we didn't think we possessed. Through adversity, we come face to face with who we really are and what really counts."
Jon Huntsman, self-made American billionaire, author of Winners Never Cheat

Day 69 - Marking time

The weeks roll by, and suddenly the wedding looms up. There is much to do, and, like the saying, so little time. However i am sure we will get everything organised.

We are beginning to receive replies to our invites sent last week. Of course these are from family mostly, so they are from people who knew we were s3ending them, and who we knew would likely be coming, but it's good to get the replies, and it will also give us something to keep for the future too.

Saturdays are a bit of a nothing day, as i have said many times in this blog. I get home from work, and need to sleep, wake in the afternoon and set off for work again at 4pm.

This of course gives me very little time with cleo, although i have to say she was in good spirits this morning. She seems far better emotionally this last couple of days which is very pleasing. Highlight of the morning: sausage sandwiches for breakfast. Her hand is much less painful since the ring has been removed, and the swelling on her finger is reducing well.

So, its back home for Sunday, and work once more till monday morning, then a busy week ahead. Weekends are about marking time really, although the one benefit is that cleo does get some much needed rest which sets her up for the ensuing wekk ahead.

Day 68 - Upstairs, Downstairs

Last night cleo spent most of the night in some pain as a result of her swollen finger and the ring that she could not get off. By this morning it was even more swollen, and we had physiotherapy at 9.30. James said he would have a try at getting the ring off, but after 30 minutes we gave it up, and decided to go straight to a jeweller after the hospital. This we did, and we were lucky to find a wonderful jeweller near where we live who very carefully cut the ring off in about 5 seconds, with the right tool. I have to say the relief on cleo's face was very apparent when this was done, and within an hour or so the swelling in her finger had begun to go down.

We still have the ring, and we might have it repaired in the future as it has a lot of sentimental value for us, even though not much in terms of financial worth. For the moment, with cleo's swollen hand due to the paralysis and lack of mobility, when we get married in 2 weeks time we have opted not to exchange rings. This can of course be done at the handfasting in June.

So, after all this it was home and the preparation for work at the weekend, and cleo going into hermit mode in the bedroom for a couple of days. Having said that James has started practising walking downstairs with her this last week, and once OT get their act into gear and actually supply the second bannister we have been promised since before New Year we might even begin to get cleo building the confidence to get down the stairs on her own. This won't happen for a while because I know that she finds the prospect of descending the stairs quite daunting right now. Our stairs are quite steep and the last thing you need is to be unsteady when coming down a flight like that but we can make no progress until the bannister is actually installed. (mental note: kick ass next week about bannister!)

I fully accept that the hospital has to hand over the patient to the community care team, but the highest standards of care must be maintained. I admit I only have "gut feeling" about this right now, but i certainly don't see the team we have seen at home coming anywhere near the levels of expertise demonstrated by those staff who have been looking after cleo so far.

We still await the first visit of the community physio, and hopefully that will be next week, although I have to say that I hope the physio is as good as James (which I doubt) and if not then I may have to insist that cleo goes back to James. As in all these things my prime concern is for cleo's well being, and continued recovery and improvement. If we don't see that, then I start making noises.

Let's hope I don't have to.

Day 67 - Retail Therapy

We had arranged to miss physio today as james was busy and we had some things we wanted to do. I took cleo shopping, and we bought a load of new clothes for her. It was quite funny with her in the shop, pushing a wheelchair with cleo buried under a mountain of clothes. Still at the end cleo had a huge bag of new clothes, which no doubt we will see over the next few days and weeks.

Second on the agenda was the hairdressers. We have booked cleo to be "done" next week, she's going to get all blonde again, which we both like, and while they are doing that, a new set of nails too. The red christmas ones are coming off, and wedding ones will be replacing them!

Finally I went off to Moss Bros. to organise my wedding outfit (well you have to don't you) and it's a frock coat, and all the stuff to go with it. Don't you just love frock coats, and wing collar shirts?

Tomorrow we have physio early, but before that we are probably going to have to go to a local jeweller, because cleos ring, which we bought when I first came down here, and which I wear the same design, needs cutting off her finger.

Her left hand is quite badly swollen and the ring is cutting into her finger, so I think it's best for us to get it removed, and if needs be I will get her another one for the wedding.

This picture shows the rings which we both wear right now. A celtic knot style.

And of course tomorrow is Friday, so I have to work friday night. Still, the weekend goes fairly quickly and Monday comes around soon enough.

Day 66 - Becalmed

It's not easy to say things to someone whom you love, that you know may hurt them, or which might be taken wrongly. However, as I have also noted in here before, I can be no less than honest, and for the last few days I have been struggling with a recurring thought.

Self-esteem is all important to someone who is fighting against something like stroke. It is very easy to get drawn deeper and deeper into a black hole of despair, especially as time passes and there seems to be little happening in certain areas. Cleo in my view was getting like this over the last few days. I sensed she was becoming resigned to certain things, and the result of that was a general lack of fighting spirit, and an acceptance of what was there, rather than a continued effort to drive oneself out of the "sameness" in which she found herself.

What didn't help either was the apparent negativity in both the home visits we have had the last couple of days from the care team: they seem to focus on what you CANNOT do, rather than what you can. I find this very frustrating, because in my view this is no way to support somebody, but rather shoots them down rather than building them up which is what they really need.

Anyway, after the care visit cleo needed a sleep before we went to physio, and I sat here agonising over what I knew I wanted to say to her, but not really knowing the best way. In the end when she woke we talked about what I felt was wrong in respect of her self-esteem and emotional well being. I explained that she had two choices: sit there and do little to keep her mind enthused, or attack each day with renewed vigour. How to do that? By not allowing herself to become stuck in a rut, and especially in relation to her personal pride in herself. Now of course when you are not well, and often tired, it's easy to drag on a pair of jogging bottoms and a tee-shirt every day, but what does that do for you? Very little I say!

It was as if the good ship cleo had become becalmed in the doldrums of rehabilitation and physiotherapy. I just needed to unfurl those sails and catch the wind in them again.

So, I suggested that she think about some other clothes, skirts, and blouses, things to make her feel more like cleo, than some sexless nothing, which was where she was headed. After a whole load of agonising and careful explaining she put on a skirt, and a nice jumper, and off to physio we went. Result: James immediately noticed she was wearing a skirt. Case proven I think.

We have agreed that she will do this regularly; get herself out of the jogging trousers and tee-shirts and get into some more feminine and "cleo-like" attire. I am going to hold her to this, and as we have nothing else to do tomorrow morning a little retail therapy won't go amiss. So it's off to the shops for some new clothes for cleo.

I am convinced that this will help her emotional state: feeling like cleo again rather than a victim, rather like she did when we went to dinner at our friend Alan's the other night.

Watch this space.

Becalmed

I am like a ship becalmed,
In a sea of emotion,
No driving force is here, because you are gone,
Elsewhere to blow your motive winds of power
Upon another.

This cannot be, it is my sails you should unfurl
With each sweet moment
I defy you to resist the power you hold
To move this human Marie Celeste
That now lays silent on the millpond sea.

And clever yet with all you do
Your trap is set, to seek one who,
Will Master be, and take the reins
To lead you cross the ocean plains
Out of the calm, into the stormy sea,
And back into the calm once more

paul knox

Day 65 - Bath Seats and Baited Breath

The day started with our first visit from an Occupational Therapy person assigned to the home care team. He did a general assessment of cleo's needs, and capabilities, and the result was that they will recommend a hydraulic bath seat. This is a piece of equipment that allows a person to be lowered into a bath, and back out, without having to be physically lifted by someone else (namely me) thus stopping the possibility of me injuring my back, or accidentally dropping cleo which would be a disaster for us if either happened.

Our view was that if we get nothing else from all this the bath seat will be a major bonus. We shall see whether it gets approved by social services. Further visits should occur from both nurses and home physiotherapy staff in the near future.

As I have said many times, cleo and I are a team, and we work best when we do that. Today we worked on the bedroom, adding a shelf for the TV, and making the place a little more organised, as well as tidying the kitchen, and sorting laundry. All pretty mundane stuff really but, in the bigger scheme of things these are important milestones. If cleo can manage to be able to use the washing machine, or dishwasher, she gains more independence and therefore needs less help around the house. It also means that she will be able to contribute to the household again, which she so badly wants to do. When we had finished upstairs she even managed to hoover some of the bedroom floor.

This afternoon it was off to physio with James and again he was working on her arm and hand.
cleo gets rather despondent because there still is no function at all, but James has hopes of getting at least something in the hand. He reminded her that there is still a fair way to go in terms of recovery within the brain itself, and that the way the hand is, and looks, he senses that it is close to being able to do something. I tend to agree with him.

We await that moment with baited breath.

Day 64 - Water Baby

Once the weekend has gone and work has finished we seem to relax much more. While there are no physical changes in cleo since yesterday, she seems far more at ease. I am sure this is because she doesn't have to be alone.

Physio this morning with James was spent yet again working on cleos arm and shoulder. There is still no real sign of any recovery in her hand yet, but he is very patient, and we are hopeful.

I had not slept since yesterday, and so once we were home from the physio it was sleep for me, until early evening, when the highlight was getting cleo in the bath. I am convinced that this does her the world of good. The water seems to allow her hand and leg to become lighter, and her whole demeanour changes. She has always been one of those people who never liked showers, and always preferred baths. While the logistics of moving her in and out of the bath are not that easy, the results are more than worthwhile. She is a real water baby, and just loves wallowing in a hot bath, and I am pleased we can manage to let her do this.

Tomorrow we have a visit from an OT person who we have not met yet, so we wait to see what that will bring. cleo doesn't like the thought of people coming into the house who might start trying to tell us how to do things. I have assured her that will not happen.

Day 63 - More Of The Same

I think that honesty is all important in all things. This morning cleo and I spent a little time discussing the less obvious things which may have been affected by the stroke. She wanted to know what i saw as being "not right" so that she can be aware of them. Only if these minor shortcomings are pointed out can she be aware of them, and then work on improving them.

One of the main things which seems to be a fairly common effect is that of communication problems. Not the very obvious inability to speak caused by the paralysis, of which cleo has virtually recovered but the far more complex use of language, including grammar and punctuation, and in this case in the use of the written word. It may be that cleo does not "see" what she has actually typed, but rather what she "thinks" she has typed, sometimes inadvertently missing out spaces, or punctuation. This may well be something that we can work on.

The trauma of such an episode as a stroke can lead to some particularly odd and disconcerting effects. Not least of these is the highly charged emotional state that I have already mentioned before, and the resulting confusion that can be caused as a result of that emotional state. These effects are frustrating for both the victim and those around them.

It is not easy to tell someone very close to you that they may be suffering some loss of faculty, in speech or communication, or mental ability, but as I said honesty is all important, and so we talked this through carefully, and agreed that I would point these things out if i noticed them, to allow cleo the opportunity to get them right.

I should also point out that cleo has set her mind on trying to be a little more independent of us in some ways. James has given her a walking stick to try, for no other reasion than it may help if she has to move around the house on her own, although we have both agreed that she will not become dependent on aids if at all possible.

She has learned to put her shoes and socks on, although this takes about 15 minutes. More power to her for doing that I say! Of course she cannot tie shoelaces, at the moment!

It is 9 weeks since that stroke and I am still amazed at the recovery that cleo has achieved thus far, allowing for the density of the stroke she had, and the extent of the paralysis that was there in those first few days.

Since the 21st November there have been many ups and downs, many tears, and much laughter, great stress and relief too, and over the coming months I am sure there will be lots more of the same.

Bring it on!

Day 62 - Roller Coaster Ride

Rehabilitation from stroke is not easy; it tests the victim, and their family to the limit in many ways. Predictable it certainly is not, except to say it will be a roller coaster of emotion.

Since cleo had her stroke we have all ridden that roller coaster in many different ways. For cleo herself there has been the initial coming to terms with what happened, which often takes some time. Those first few days she was rather like a startled rabbit in very bright headlights: almost shocked into an inability to react. Over time as she became more accustomed to the predicament in which she found herself, she also came to understand more each day what was needed to make those steps that are vital in her rehabilitation. All the while of course there are the inevitable self-recriminations, the what-if's, and maybe's: if I had done something differently, or should we have done this or that, or not. None of these make any real difference as we cannot change the past.

The first piece in the jigsaw is to achieve a positive mental attitude: be thankful for what we still have, rather than what we might have lost. Once that is realised it's about starting to work toward specific goals. They may seem small at first, but they have to be achievable. As long as there is some measureable improvement I believe that there is good in that.

It is often easy for us to overlook the effect such an episode has on the children. Sarah, at 17 and Hannah, 11, have been wonderful. I will never forget that first afternoon when I had to tell the girls that their mum was very ill, and that they had to be prepared for a shock when they saw her, because of how she was. In that few minutes they must have been stunned, frightened, unable to quite comprehend what I was saying, and of course scared for their mum. Yes there were tears, and yes there were the inevitable questions; "will she be ok?" and "is she going to die?" While those questions may not all have been asked out loud, I am sure they were thought, as I had thought them too.

From that first moment when they walked into the ward with me the girls have shown a maturity in how they dealt with all this that belies their years. They have been wonderfully helpful to me too, while cleo was in hospital, at times when I needed support and strength I got a lot of that from them. Since cleo has been home they have shouldered responsibility that many children cannot even imagine. Hannah gets up earlier than usual in the morning to help her mum get dressed, and Sarah looks after her mum at weekends while i am at work, as well as doing more washing and ironing than she ever thought was possible every week.

I have tried to always be honest with them, and include them in all the decisions and conversations we have had with the hospital, as well as my concerns, and thoughts about how things were going. It is no good telling them something that is not true, only to have to backtrack the next day.

To the two of them I say thank you for being so understanding of the situation, and of me and my "bear-with-a-sore- head" attitude in the mornings. I am proud to call them my family now, and feel priviliged to be able to protect and look after them as best I can. Cleo is rightly proud of them too, although of course they are testament to how she has brought them up, which only serves to underline a little of the stuff of which cleo is made.

And what of me? Well, I have been to hell and back! Sometimes, in private I have felt so tired, so drained, and so worried, but I have to say that each day now I see more and more of the cleo I knew before the stroke coming back to the fore, not all the time yet, but that will happen without doubt, and as she works to improve her walking, or speech or whatever, that grit, drive and determination that is integral in my cleo's personality will serve her in good stead.

How Can I Prove

How can I prove my love is everything?
When thou hast begged for pain and hurt from me
I know not what I to this union bring
When care is all, but pain is what I see
And what if when the pain is made too deep
Lays heavy in the heart for none to see
The love we swore is far too hard to keep
Stands broken like a leaf blown from the tree
And yet you ask for more each time you speak
The need to be fulfilled is greater still
Though I must never show that I am weak
Each time I raise my hand I sense a thrill
And you alone have led me here to this
Together will we find our pleasures bliss

by Paul Knox

Day 61 - Emotionally Charged

The problem with only having to work 3 days a week, if there is a problem of course, is that while I am at home we become too close, and the routine of being together becomes too comfortable. When friday comes around we then have to deal with the wrench of being apart. Added to this cleo has become very emotional over the last few days; the slightest thing seems to play havoc with her emotions. So, when friday afternoon comes round cleo gets a bit stressed, and I feel powerless to help, because I have to go to work.

Today ended up with her in tears. She has admitted to me that of late she gets scared when she is alone. I am sure that this is a very natural reaction to the trauma that she has been through. It is very off-putting though, to see this strong woman, who was never afraid of anything, almost running scared of her own shadow. I do understand that these are effects which do happen as a result of stroke, and while I try to support cleo as best i can, sometimes I feel completely at a loss as to the best approach to take.

We had cleo's physio early today, and James spent most of the time working on hip and shoulder stability. Once the hip and shoulder are stable the muscle control becomes easier through both the arm, torso, and leg. This is no mean feat because much of this stabilising activity we don't even know that we are doing. It just happens. After a stroke the brain, which learned these actions when we were very young, has to find ways to compensate, and that is where the problem arises. cleo keeps saying she doesn't know how to do these things, and I can sympathise. We don't actually know, they just happen.

I feel for her so much because she is trying so hard to improve, and each day she makes a little progress, and then something happens that makes her feel that task ahead is almost insurmountable. I do not envy her one bit.

If I could change places with her then I would, without any hesitation.

On my way to work this evening i was thinking about the day the stroke happened. It is an awful thing to see someone you love reduced to a fraction of what they were in a matter of moments. I was reminded of the film "2001 A Space Oddyssey", when the computer Hal 9000 has the intelligence removed bit by bit, and its whole "being" goes through a regression from what it was to almost a childlike existence. That scene, if you know it, encapsulates the way a stroke (in my view at least) appears to affect a person. Now of course cleo has made huge strides in returning to what she had before, but it is frightening to witness, and painful for me to see that happen to the person who means most to me in all the world.

To my cleo: I love you, and will do anything in my power to help you get better. Whatever it takes, I will do. We are the best team there is, and our strength lies in our love for each other. Take that love and harness it, use it for whatever you need. I will be there, whether it takes a week, a month a year or the rest of our lives.

Day 60 - A Family Outing

Today started rather earlier than usual. Cleo and I had swapped sides on the bed, because we are more comfortable that way. This meant however that to get to the commode she had to walk around the bed. She was a little unsteady this morning, and having got herself up and standing, without any help, as I was still asleep, and she had not woken me, she slipped and fell, ending up flat on the floor in tears at the side of the bed. I woke as she hit the floor with a thump, as did Sarah and Hannah, and I lifted cleo back onto the bed; thankfully she was shaken more than hurt.

Naturally these things will happen, but it is still a worry. The four times she has fallen, twice in the hospital, and twice at home has not produced any injury, except dented pride. When these falls happen cleo becomes more wary of doing things on her own, and we just have to take a little more time to get her confidence back.

Out to Dinner

Our very good friend Alan, who is in a wheelchair himself, has just had some renovations done on his house. He promised that he would cook dinner for cleo when she was out of the hospital, and tonight we all got ready to visit him at his house in Essex, a drive of some 80 miles.

For the first time since the stroke cleo put on a skirt and blouse (track suit bottoms and tee-shirts have been the clothes of choice since coming home), and Sarah helped her do her hair and make-up. She looked wonderful: Sarah remarked that she "looked like Mum again". I know that clothes and such are just the "wrapping" but I have to agree, it was brilliant to see her dressed, the obvious confidence it gave her, whether she admits it or not, was a real lift for her.

We arrived at Alan's and had a lovely meal, and a great evening. He even made banana split (cleo's favourite) for dessert. We got home just before midnight: cleo was tired, and the girls slept most of the way home, but I have to say that it was wonderful to go out as a family again, and to be, in a sense, normal.

Day 59 - Courage...

Courage in Adversity

This morning, cleo cleared up the kitchen. Now that may not sound like much, but for her it was a major triumph; she took a long time, and loaded the dishwasher, cleared up the worktops, and put things away. For someone who cannot walk properly that shows not only huge courage, but massive intent, and absolute focus. Her life is driven by the need to look after people: me, and the girls. She needs to do these things. At the moment that is a virtual impossibility, but I am moved to tears almost by the way she harnessed the drive that is cleo to force herself to do this.

The last 8 weeks or so she has fought her way back from being a victim, to a survivor. She will walk again, there is no doubt, and she will get better, and the vibrant person that is my cleo will shine bright again, like the star that she is.

I cannot express how much I love this woman, she is an example to all those who find themselves in difficult situations. Never lose sight of what you want, of what you must do, and where you want to go. If you want something badly enough, you can get it. She will.

Courage of Conviction

All too often we say things, in the heat of the moment, or to appease another, or to let them hear what they want to hear. Having said those things we instantly regret them, because we didn't really mean what we said. A long time ago I told cleo she was going to be my wife. I know that this last few weeks she has worried about whether that will ever happen. I have to say that I do not make false promises, and when I say something I mean it.

Today I got the chance to demonstrate that conviction I have always had about marrying cleo: we went to the registry office and legally declared our intention to be man and wife, which means that we can officially marry on 14th February as planned. Not once has the thought ever crossed my mind that we would not. Everyone (except a few lucky people) find they suffer setbacks in their lives; we could run away from them, or we can face them. I have never run away from my promises, and I never will. I gain strength from cleo's love for me, and I hope she does the same. I hurt when I am away from her, and I hope she feels the same. I have the courage of my conviction to her, and the kids, and I KNOW she has the same.

You Are My Destiny

You are my destiny
You share my reverie
You are my happiness
That's what you are

You have my sweet caress
You share my loneliness
You are my dream come true
That's what you are

Heaven and heaven alone
Can take your love from me
'Cause I'd be a fool
To ever leave you dear
And a fool I'd never be

You are my destiny
You share my reverie
You're more than life to me
That's what you are

You are my destiny
You share my reverie
You are my happiness
That's what you are.

by Paul Anka

Day 58 - Counting the days

WE made a sort of agreement with james today: he will work mainly on her arm, and we will concentrate on cleo's leg, and walking. Of course we will be guided by James but we feel that we can progress the leg as there is movement and even a little control there now, whereas james' expertise can be far better deployed in trying to get something happening in cleo's arm.

WE had already talked at length today ourselves about cleo doing some more exercises, both specific to her stroke rehabilitation, and more general ones to help her fitness. She even managed, with my help to get on the exercise bike and ride for 20 minutes which no doubt will help her leg and ankle movement, as well as creating some muscle tone throughout her whole body, which after all these weeks is no doubt lacking. The thinking here is that 45 minutes each day of physio is not going to get her where she wants to be, that has to be done through much hard work every day, and for hours and hours if needs be. She has made that choice and i for one agree that is the way to go.

cleo is driven by the fact that she feels she does not want to be a burden on us: she hates relying on other people for the most basic of things, and she has vowed to try and make my life easier (I really don't mind, because it's what I do, looking after her in every way) because she thinks I am getting run down by having to look after her. However there is no better incentive than something you really want, and this is one of those choices that cleo has made; it will of course help her to focus on becoming more independent.

James spent a long time today working on her arm and hand, which is very painful right now, but she endures that because she knows she must. It is worth it because when she pushes herself like that the results are obvious: extended movement and reach in her left arm, but as yet no real control at all. The biceps seem to be working a little, and the triceps "fire" occasionally when stimulated, although as yet not voluntarily. If only we could see some real sign (even a little one!) that something is happening in her hand and lower arm. All the while this does not happen I know cleo gets quite despondent. She has always been an impatient person (I want it, and I want it NOW) and becomes very frustrated if she doesn't see results quickly. For now we have to keep going, and I am sure in time the results will come.

The time frame is difficult to estimate. Most "recovery" that there will be from stroke happens within a period of about 90 days (purely an average of course, which varies from person to person). After this time it is said that while there may still be some further improvement and recovery, from then on it is often about learning to adapt and use what you have at that point. Getting control and practice is then something that is best done by the patient, rather than physiotherapists, and on many sites I have seen accounts which say that a particular action may take 12 or more months to perfect, through sheer hard work and exercise.

As we are only at day 58 since the stroke there is still much scope for further recovery in terms of cleos neurological and muscle action. She has of course shown huge improvement since the 21st November, and I for one am still convinced that with determination and willpower, as well as the support that we are happy to give her, she will walk in her high heels again, and she will get use in her hand.

It won't be easy, and it wont be quick, but it will happen, of that I have no doubt at all.

Counting the Days

No, not since the stroke, but something that happened a while before that. Today is the 4th anniversary of my coming here to kent to move in with cleo and the girls. I have to say that these 4 years have been the happiest ones of my life. They are the family I never had, and I am so proud to be able to call them mine. Nothing, not even a stroke can stop me giving thanks to whoever or whatever guided me to find cleo and for us to fall in love, but I am eternally grateful for the opportunity and i cherish every day since 17th january 2002.

I look forward to many more years of the same. Thank you my cleo. I love you.

Day 57 - Floor Exercises

Sounds like a section from the gymnastics in the Olympic Games huh? Well, not quite. James wanted to try some new stuff today, and he showed cleo how to get onto her knees, to enable her to do exercises with balance and leg stretching. By being on her knees she still has to balance but because there is a much shorter distance from hip to ground, that creates better stability. In time these exercises will help to increase the muscle tone that is lacking right now.

Her hand hurts a lot at the moment. James says it's because the muscles in her arm are shortened, again this is something that comes from lack of use, and the paralysis. So, each day we will stretch and straighten her hand to try to get a little more flexibility into the hand, wrist and arm muscles, which, according to James will help to alleviate the pain she feels.

After the weekend cleo finds that her legs are quite wobbly: again due to not being used too much over the last couple of days. As she goes through the week and uses her muscles daily, she becomes more stable, and has better balance. Today her leg rather seemed to have a mind of it's own.

The next few days we will spend sorting as much as we can for the wedding in February: invitations are almost done now, and will go out in the next day or so.

We bought cleo a static cycle machine (called a pedal exerciser)which arrived today, and which hopefully will help in strengthening her legs ankles, and feet. Having tried it before physio today I think we are going to have to tie her feet into the pedals, as the velcro footstraps don't seem to hold her feet in too well. I am sure we will get the hang of it, and it will be of benefit over the coming weeks and months. Because the machine can be used from a sitting position at any angle it is both easier and safer than trying to do the same thing on an exercise bike. It must be a reasonable product because it's identical to the one they use at the hospital.

Day 56 - Eight Weeks Since..

Weekends as i have said many times are awful; we get so little time together, and everything seems to be rushed, always geared to getting to and from work in London.

I got home this morning at about 7.30am, and cleo was just waking up. One good thing this last couple of nights is that she seems to be sleeping a little better. Maybe just being a little more relaxed is one reason, and perhaps also the improvement in her general well-being has helped too. It's eight weeks since the stroke now, and while there is still a long way to go, the further that awful day recedes into the past the better as far as i am concerned.

Shake a leg!

cleo and I have discussed on several occasions how improvements may happen in her recovery, and while many of these can be measured in very small increments, we also believe that there will be times when suddenly, and without warning, we might realise that she was doing something which we had not noticed before. This morning we had one of those moments. I was helping her to get up from the bed when all of a sudden her left leg, which hitherto had not moved without great effort and with little lateral control, suddenly lifted and swung off the bed almost normally, and with her toes pointing, again something we had not seen before today. Sometimes I think these unconscious moves are more natural than trying to create a movement "to order" by thinking about it too much. This was a one-off; after that the leg seemed to return to it's previously less active state, but I take great encouragement from this, simply because it demonstrates the brain and all the motor functions are beginning to operate again.

After a cup of tea it was bed and sleep, and cleo just pottering around on the pc till I woke at 2.30 and then the rush to get ready and out to work again.

I feel that we are acting more as a family again, even down to the little niggles and moans and groans that one expects, and for me this is a good sign: the more normal we are the closer cleo is getting to achieving a recovery.

Tomorrow we begin sorting the wedding in earnest, and on Tuesday we have to go to the registry office in Ramsgate to declare our legal "intention to marry", and of course pay for the wedding! I hope the week goes as well overall as this last one has.

Day 55 - Just the way you are

We had quite a nice afternoon when cleo's 2 brothers came to the house to visit her and we started the ball rolling on arrangements for the wedding, as everyone there was going to be involved.

Cleo had spent the day upstairs while I slept, and then we all sat downstairs for a while, which made a welcome break from the obvious boredom of spending a large majority of the weekend in the bedroom. In fact when I left for work she was still downstairs, and they promised that her brothers would get her upstairs when they were leaving, which would be the first time someone else has helped her up the stairs other than me. That was achieved without any problem, as i got a text on my way to work saying cleo was back in the bedroom.

I think the restful weekend times are good for cleo right now, because the weeks are very busy. She must not get overtired, and that couple of days doing very little gives her time to recuperate from the the monday to friday exertions, even if she does get a little bored.

She seems to be showing some little improvement each day, nothing major, but a combination of both physical well being and emotional state too. For me this is very pleasing. There are still a few demons she needs to exorcise though; this morning she was suggesting that she may never get back to how she was, and that it was more like having a child around than an adult. I soon put a stop to those thoughts! It's important that we think of the positives, and look to regain what we can from this, not to see what we might have lost. We have so much to look forward to this year, and being pessimistic is not the way.

Just the way you are.

I fell in love with cleo for better or for worse (is there a marriage reference there somewhere?) and this is all part of her and what makes cleo the wonderful woman she is, and always will be. She has not changed at all, as far as I am concerned; I still see the love she has for me, and I try to give that back to her in whatever way I can. So, to cleo i say, don't go changing....I love you just the way you are.

Don't go changing, to try and please me
You never let me down before
Don't imagine you're too familiar
And I don't see you anymore

I wouldn't leave you in times of trouble
We never could have come this far
I took the good times, I'll take the bad times
I'll take you just the way you are

Don't go trying some new fashion
Don't change the color of your hair
You always have my unspoken passion
Although I might not seem to care

I don't want clever conversation
I never want to work that hard
I just want someone that I can talk to
I want you just the way you are.

I need to know that you will always be
The same old someone that I knew
What will it take till you believe in me
The way that I believe in you.

I said I love you and that's forever
And this I promise from the heart
I could not love you any better
I love you just the way you are.

Billy Joel

I think that just about sums it up.

Day 54 - Looking forward.

The weekend looms and cleo is always a little down at these times. I have to go to work, and she hates me being away for all three days at the weekends. She looks tired this week too. We have done lots of physio with James, lots of walking at home, been out and about all week, and of course she is wrappeed up in the arrangements for the wedding too. This morning, by way of a change we had arranged physio at 10.00am. James has really been pushing her hard, but I guess thats good, and today was no exception: working on getting her balance and stability better, as well as further manipulation and exercises on her arm and hand. She tries so hard, and I know she is really frustrated right now that there has not been any movement in the hand, although we take encouragement from the fact that her shoulder seems far more stable ( a sign that the muscles are beginning to work again) and there is some action in the muscles at the top of her arm, although only very minimal right now.

I guess the highlight of the day was the arrival of the dress that i bought for cleo to wear to the wedding, and the handfasting ceremony. I think she likes it! This afternoon sarah and cleo spent a while beginning preparations for the wedding in February, and the handfasting in June. More of that later no doubt, but let's just say it's all in hand.

I am sure they will go over budget! But who Cares! You can't put a price on happiness. I will be the happiest person on this earth when cleo is my wife.

Take My Breath Away.

Oooh oooh take it take it all away
Oooh ooh take my breath away
Oooh ooh yoooo take my breath away
Look into my eyes and you'll see
I'm the only one
You've captured my love stolen my heart
Changed my life
Every time you make a move you destroy my mind
And the way you touch
I lose control and shiver deep inside
You take my breath away
You can reduce me to tears with a single sigh
Ev'ry breath that you take
Any sound that you make is a whisper in my ear
I could give up all my life for just one kiss
I would surely die if you dismiss me from your love
You take my breath away
So please don't go
Don't leave me here all by myself
I get ever so lonely from time to time
I will find you anywhere you go
I'll be right behind you
Right until the ends of the earth
I'll get no sleep until I find you
To tell you that you just take my breath away
I will find you anywhere you go
Right until the ends of the earth
I'll get no sleep until I find you
To tell you when I've found you
I love you
Take my breath take my breath ... away

Freddie Mercury

Day 53 - Highs and Lows

As with any kind of traumatic episode that one is trying to recover from, there are always going to be highs, and lows. We have seen this all too many times already in the the last seven weeks or so. We also accept it as a part of cleo's rehabilitation, but, that said it doesn't make it any easier. Take last night for example. As I have said before cleo struggles with the nights: she has some fears which we might think are silly, and which under normal circumstances she would not even give a second thought to. However, right now those fears have become a major focus for her: things like not wanting to go to sleep at night, being on her own, even hearing things that are not there, and getting a little jumpy. Add all this to the highly charged emotional state in which she finds herself right now, and cleo is apt to become very tearful, and almost hysterical about some things. I try to keep her calm, to offer words of comfort and support, but these don't always help. These irrational fears which she sees as so real seem to come to a focus towards the end of the week, as the time comes round for me to go back to work.

Last night she sobbed for ages with me holding her. This was because she was tired, she didn't want to sleep, and the aches and pains of the physical exertions that she puts herself through were obviously getting to her. I feel so powerless at these times. I wish I had a magic wand to make it all go away; alas I don't. She is frustrated by the lack of ability to walk, or use her hand, by the pains in her arm, and the frustration that she obviously feels in trying to deal with all this every hour of every day. Perhaps some restful sleep might help? Even that is not easy right now.

Confirmed!

When the post came this morning we got the confirmation of our booking for the wedding: 14th Frbruary, 12.00, all done and dusted. I have to say that I can't wait. I spent 20 years in what turned out to be a loveless marriage, and then I finally met my cleo and left the comfort zone in which too many of us shelter afraid to follow our heart. I am glad I made the choice I did, because I just want this woman to be my wife. To be able to say she's Mrs Knox, and know that all those years are finally exorcised, for me will be a wonderful moment. Roll on February 14th.

Electro Stimulation: Someone nicked the batteries?

As we said James had planned to carry out some electro-stimulation of cleo's muscles today. He got the machine all hooked up and it didn't work properly. So, nothing there to write home about. I guess this is all part of the NHS: dealing with stuff that doesn't work. We sort of joked that maybe someone had nicked the batteries from the TENS machine. However it didn't work properly so James worked on cleo's arm and hand for the rest of the time, and we think we may have got a movement, spontaneously albeit, in one of her fingers. Added to that she actually managed to move her arm too, rather shakily, but thats the first time since the stroke, and it shows that something is back there. We have now seen muscle action from her shoulder, and upper arm, so i am hopeful that this is the first sign of movement of at least some kind getting back to the arm. I have to say i was really proud of cleo when she was fighting to lift her arm: it was a struggle, and I know she was tired. Well done the future Mrs K.

Thinking about the future?

Thought this was rather appropriate tonight....

When I get older, losing my hair, many years from now,
Will you still be sending me a Valentine,birthday greetings,
bottle of wine?
If I'd been out 'till quarter to three,would you lock the door?
Will you still need me, will you still feed me,
When I'm sixty-four?

Hmm------mmm---mmmh.
You'll be older, too.
Aaah, and if you say the word,
I could stay with you.

I could be handy, mending a fuse, when your lights have gone.
You can knit a sweater by the fireside,
sunday mornings, go for a ride.
Doing the garden, digging the weeds, who could ask for more?
Will you still need me, will you still feed me, when I'm sixty four?

Every summer we can rent a cottage in the Isle of Wight if it's
not to dear. We shall scrimp and save.
Ah, grandchildren on your knee, Vera, Chuck, and Dave.

Send me a postcard, drop me a line stating point of view.
Indicate precisely what you mean to say, yours sincerely wasting away.
Give me your answer, fill in a form, mine forever more.
Will you still need me, will you still feed me, when I'm sixty four?

by John Lennon/Paul McCartney

Day 52 - Plans Afoot

Well, today we just have one little thing to tell everyone. We have set the date for our wedding! It's booked: 14th February, Valentine's day. Call us mad, or silly, or whatever you want, but that was a date that just happened to come up, and so, we did it.

Now, theres much organising to do for a wedding in 5 weeks time, although we have decided to make the registry office ceremony a family affair only, with a couple of friends as witnesses and close family only. Our plan is that we shall have a much larger ceremony in June, which will be a handfasting ceremony. This ceremony is more in keeping with our choices compared to the modern day marriage ceremony, although of course to be legally married we must do that too, hence both ceremonies.

Physio again today and James worked hard on cleo's arm and hand, trying to get the various muscle groups in the arm/shoulder/hand area to "fire" voluntarily. What this means is that with stimulation, such as tapping, or touching or manipulation these muscles will work, but as yet cleo does not have voluntary control of them, i.e. she cannot yet "remember" how to make them work. Tomorrow James is going to try some electrical stimulation of the leg and arms, and see what comes of that.

It's still quite early on in the average recovery time which is thought to be about 90 days, and so we have high hopes of getting something in the arm before then. Cleo has also decided she is not getting married in a chair, so I am sure that target is the main one now. 5 weeks for us to get her standing and even walking on her own so the wheelchair is not seen on 14th February!

I have every faith that she will do it.

Up Where We Belong:

Who knows what tomorrow brings
In a world, few hearts survive
All I know is the way I feel
When it's real, I keep it alive

The road is long, there are mountains in our way
But we climb a step every day

Love lift us up where we belong
Where the eagles cry on a mountain high
Love lift us up where we belong
Far from the world we know, up where the clear winds blow

Some hang on to "used to be"
Live their lives, looking behind
All we have is here and now
All our life, out there to find

The road is long, there are mountains in our way,
But we climb them a step every day

Love lift us up where we belong
Where the eagles cry on a mountain high
Love lift us up where we belong
Far from the world we know, up where the clear winds blow

Time goes by
No time to cry
Life's you and I
Alive, today

Love lift us up where we belong
Where the eagles cry on a mountain high
Love lift us up where we belong
Far from the world we know,
up where the clear winds blow.

Day 51 - The Real World

Today we took our first trip out into the "real" world, with the chair, and went shopping. We had to go and post some letters, pay a couple of bills, and get cleo a passport photo for her blue badge application. The blue badge is the disabled sign you place in your car when you park, which exempts you from most parking charges. I am getting quite good now at getting the wheelchair out of the car, and assembling it quickly, but the chair itself takes up most of the boot in the car, meaning there is far less space for shopping, other than on the back seats. When there is only two of us thats fine, but if we were out as a family then a big weekly shop would almost be impossible.

Anyway, our first foray was to the post office and the local chemist, and of course most places these days are relatively wheelchair friendly, with the exception of the doors. I find it very awkward when pushing the chair to physically open doors too. We are getting better because cleo can use her "good leg" to push the door, if its that type, but if its a door with a catch that requires a handle to be turned, its less easy.

Then it was off to Sainsburys for a weekly stock up on food, and while the place is pretty good, cleo didnt like the trolleys that attach to the chair, and they are certainly not big enough to fit a family sized weekly grocery shop into. We ended up getting a second trolley to bring all the stuff out to the car. cleo didnt like sitting in the chair hidden behind the attached trolley with all the shopping: she says its rather claustrophobic and she didn't enjoy spending my money, something which she has never admitted before!

Then it was off to the hospital for physio. James was concentrating on cleos arm and hand today, and having spent a while manipulating her shoulder, elbow and hand he seems to have got some firing of the bigger muscles at the top of the arm: the triceps, and biceps. He seemed pretty pleased at this and we even thought that at one stage we saw a twitch in cleo's thumb, but we were not sure. Hopefully the next few days of physio might result in some more definite reaction in the hand and arm. Time will tell on that one.

After physio we went to see our GP, who was not aware of the stroke as yet. He is a nice guy, and expressed his regret. Told cleo that in his experience she may well be looking at up to 18 months to see improvements, and that there will be days when she feels she has gone backwards, but to keep a positive mindset.

Our day was fairly successful, but very tiring, and I am sure that's how it will be for the coming months. Getting organised to go out, and the physical moving around away from the car is not easy, but very much worthwhile to maintain a normality in our lives as much as possible.

Angel

Sometimes
The most beautiful things
The most innocent things
And many of those dreams
Pass us by
Keep passing up by

You feel good
I said it's funny that you understood
I knew you would
When you were good
You were very, very good

I still look up
When you walk in the room
I've the same wide eyes
They tell the story
Try not to reach out
When you turn 'round
And you say hello
And we both pretend
There was an end
But there was no ending

So I close my eyes softly
'til I become that part of the wind
That we all long for sometime
And to those that I love
Like a ghost through a fog
Like a charmed hour
And a haunted song
And the angel of my dreams

I still look up
I try hard not to look up
That girl was me
Track a ghost through the fog
A charmed hour- a haunted song
Track a ghost through the fog, baby

Ooh you try hard
But you'll never catch me-- yeah

by Stevie Nicks

Day 50 - The Long and Winding Road.

This last few days cleo has, in my view made some good physical progress, in terms of her ability to stand and even take a few steps, but something came out this evening in a tearful episode just before bed: she feels trapped (her words not mine). All the things she really wants to do , she cannot. This of course is making her frustrated, and becomes a rather self perpetuating phenomenon.

One of the things she said is that she wants to "run downstairs and make a cup of tea"; well, I am sure that will happen but for now its on hold. I said that this came out in a tearful episode and there have been a few this last couple of days. Emotions of course run high when one is in situation like this, and those emotions cannot be kept under the surface all the time. They will show from time to time, in fact I suggest that they have to. If they are suppressed for too long I am sure that will do no good. Cleo also told me that sometimes she is inclined to "feel sorry for herself". Again I say why not? If we cannot let all this pent up feeling out then it simply festers inside us. Why shouldn't she feel sorry for herself? In 10 seconds on 21st November she went from being an active mum who never stopped, to a person who was totally reliant on others for everything she needed. Now, if that doesnt make us feel a bit sorry for ourselves I dont know what does. She has endured that for 50 days now, and for 50 nights which are far worse, she says. Maybe she should be allowed a little self indulgence?

We are 7 weeks into the Road to Recovery and I feel absolutely sure that we will have many more of these emotional moments, each one will need to be overcome in a slightly different way from the last. I think there is far less availabilty of information and help in respect of the emotional side of dealing with a situation such as this, than there is with the physical. With the physical problem, you can either stand up, or you cannot. If you cannot you fall over. Thats pretty clear cut. Emotional and psychological reaction is entirely different: the brain works in ways we can't even imagine: fears manifest themselves where there were none before, the smallest thing becomes a mountain of impossibilities, and it all comes back to what you cannot do now, that you could before. Psychological reaction is very difficult to predict, and while we might think we know how someone will react, they are always just as likely to surprise us and do something completely different. We always knew this was not a short term thing, and we have to be prepared to meet the challenges head on, and to keep bashing away until we beat them. The Road to Recovery may be long and winding, but we will get there in the end.

After physio today James suggested that he might try using some form of electrical stimulation technique on cleo. There are those who say it works, and those who disagree, but frankly if it begins to help the muscles and nerves fire themselves up then why not? It has to be worth trying at least. We have decided too, that we are going to devote much of the rest of this week in physio to working on cleo's arm and hand. At home we can work on the walking and the balance which we will continue to do, allowing James more time to begin a concerted effort on the hand and the arm.

The Long and Winding Road

The long and winding road that leads to your door
Will never disappear, I’ve seen that road before
It always leads me here, lead me to your door
The wild and windy night that the rain washed away
Has left a pool of tears crying for the day
Why leave me standing here, let me know the way
Many times I’ve been alone and many times I’ve cried
Anyway you’ll never know the many ways I’ve tried
And still they lead me back to the long winding road
You left me standing here a long long time ago
Don’t leave me waiting here, lead me to your door
But still they lead me back to the long winding road
You left me standing here a long long time ago
Don’t keep me waiting here, lead me to your door
Yeah yeah yeah

Day 49 - 7 Weeks and Counting

Today marks exactly 7 weeks since the stroke.
What a topsy turvy time it's been.

Weekends are always difficult for us because of my work, and today was of course no different. I got home after work this morning, and felt guilty that I couldnt get cleo downstairs for a while but I was very tired, and needed to sleep. I hope she understood that.

However we did have a little time and I get the impression that she is making progress emotionally too, which is no doubt driven to some extent by the physical improvements she has made this week as well. Her outlook seems a little less "flat" because she can see improvement in her walking, and this naturally buoys her up mentally.

I have tried to at least manipulate cleo's arm and shoulder a few times this weekend as suggested by James on Friday, and although there seems no response we must persevere with this work, because the best advice is that this is a requirement for rehabilitation, and stops the muscles from shortening, which is a major consideration in paralysis sufferers.

In The News

As we move into the beginning of 2006 and cleo's recovery moves forward I am suddenly aware of the fact that strokes are more common than I ever realised. Right now there are 2 major news stories being covered which revolve around people having suffered strokes. The first is the illness of Ariel Sharon, the Israeli Prime Minister, who has been ill for some time now, but whose condition has deteriorated recently since he had a stroke. Then just this weekend I see that Lord Stratford, (previously the Labour MP Tony Banks) suffered a "massive stroke" in Florida this week, and has died as a result.

Of course one of the highest profile stroke related deaths recently was that of Lord Lichfield.

Day 48 - A Little Reminder.

Drove home this morning after work in freezing weather and even a little snow arriving about 8am to find cleo sat up wide awake, and very pleased with herself at having managed to get out of bed and onto the commode all on her own, twice through the night. This is another one of those major milestones that serve to give her back her independence, and the feeling that she does not have to rely on other people for everything she does any more.

We had tea, and sat for a while, after which i took her downstairs for a wash and bacon sandwiches for breakfast. As I have to work again this evening I needed some sleep, so cleo stayed in the bedroom, doing stuff on the pc, and later watching television, while I slept. I woke about 2pm, and we spent a little time together, after which I got ready for work.

While it is a neccessary evil, at this time of year my work is pretty quiet and i really wished I could stay at home with cleo, but that cannot happen, so I prepared to leave at 4pm. Just as I was going, literally walking out the door, I heard a great clutter from upstairs. I ran up the stairs to find cleo in tears, and Sarah holding her: cleo had attempted to move from the bed to the chair, and lost her balance, faklling against the pc desk, but managing to get to the chair nevertheless. She was pretty shaken I could see, although she didn't hurt herself. I stayed a while, and reminded her that when moving she had to be very careful about her feet and balance, not stepping or moving until she was absolutely sure that she was as stable as possible.

Maybe in some ways this is a good thing: the scare which the stumble will have given her will serve to remind her that she must remember to be extra careful at all times. I did speak to our friend Alan, who is in a wheelchair, and he said that you cannot go forever without a fall or mishap, and the fact that she managed to save herself is a good sign. Of course it is also a good indication that her progress is moving along at a rapid rate, as a week ago she couldn't even hardly stand on her own. I guess this is all part of her re-learning process, and is an inevitable consequence of the risk-taking that comes as a consequence of the rehabilitation. It would not be fair or possible to wrap her in cotton wool forever, and I am sure she would agree with me that those risks are worth the effort as long as they are calculated and carefully considered.

Day 47 - Settling Into a Routine

We are settling into some kind of routine now, with daily visits to the hospital for physio, and the girls back at school, there is at least some order in our lives again. Of course the weekends are here with me at work, but, having put a pc, and all the comforts of home in our bedroom, including sky TV we have opted to get cleo upstairs each evening before i leave, and she will stay there until I get home the next morning.

This means she is closer to Sarah at night, who is in the next room, and she doesn't have to sleep on the sofa bed. I have to say that while i was a little worried about leaving cleo last weekend, i am far less concerned now. She has made such good progress this last few days that while she is aware of her limitations i am far happier that she is capable of doing at least a few things for herself.

This morning, for example, while we were getting ready to go to the doctors (Sarah has an ear infection) I took cleo to the bathroom, and left her there. i went off upstairs to get something and when i came back down a few minutes later to collect her she was sat on a chair at the kitchen table: she had managed to get herself from the bathroom into the kitchen. She was beaming all over her face! "Flash cow!" I said, and gave her a kiss. Smiles all round.

Well Impressed!

I think the simplification of the walking method we found has helped no end. At physio this afternoon cleo again walked from the car, although i spend most of my time walking backwards these days holding her arm! James was impressed with the fact that she is locking her knee far less than a couple of days ago, and of course this makes each step far more stable, and cleo is far more confident about knowing she is less likely to fall or stumble. The leg is coming on well, and new muscle groups seem to be "joining in" each day. Today it was the hamstrings that almost spontaneously worked, after james had worked them a while, and as each group begins to work there is naturally more control of the leg, foot, and hip giving even more stability and confidence.
We have some exercises to try this weekend on cleo's arm and shoulder to try and get some movement back into that now. I understand that the arm and hand often takes longer to return: bigger muscles like the leg muscles are easier to work, but the smaller ones in arm and hand are far more difficult, and so it will be a time and perseverance thing for these. We will get there of course, but I doubt it will move as quickly as the leg has.

Love Is All Around

I feel it in my fingers
I feel it in my toes
The love that's all around me
And so the feeling grows
It's written on the wind
It's everywhere I go
So if you really love me
Come on and let it show
You know I love you, I always will
My mind's made up by the way that I feel
There's no beginning, there'll be no end
'Cause on my love you can depend
I see your face before me
As I lay on my bed
I cannot get to thinking
Of all the things you said
You gave your promise to me and I gave mine to you
I need someone beside me in everything I do
You know I love you, I always will
My mind's made up by the way that I feel
There's no beginning, there'll be no end
'Cause on my love you can depend
I got to keep it moving
It's written in the wind
Oh everywhere I go
So if you really love me
Come on and let it show
Come on and let it,
Come on and let it,
Come on and let it,
Come on and let it show

Day 46 - Bloody Bureaucracy!!

Today we had a visit from a lady who is from the Stroke Association. Very helpful and extremely knowledgeable regarding one of the most confusing and long winded forms i have ever seen: the application for Disability Living Allowance (DLA). This form runs to some 54 pages with notes and guidance.

Anyway, we downloaded it from the net, and I have spent most of the day putting the whole thing together. DLA is payable from 3 months after the onset of stroke so its due 21st February. We felt it was important that we got this form sorted and the application in, in good time for the decisions and awards to be made before the 3 months is up. This way we can be sure that what is to be paid can be made available from the due date without any hold ups. Hopefully with that all done now this can move forward in good time. For that we are indebted to Ann from the Stroke Association.

As a result of this we cancelled cleos physio with james today, and rescheduled for tomorrow, which will be earlier than usual, as its friday and i have to work again. We also need to organise how cleo will sleep over the weekend, although we have rearranged the lounge which should make it better than last weekend.

Dinner is Served

After Ann left, and the girls had come home from school, cleo really wanted to try and do something constructive, so, I took her into the kitchen, where, by sitting on a dining room chair she managed, with help to cook dinner. I know she was so proud that she had made dinner for us all: sausages, hash browns, cooked tomatoes, and baked beans. Well done cleo, yet another milestone! They seem to be coming thick and fast right now, which is good.

Cleo seems to get tired during the daytime, and Ann suggested that she ought to consider "going continental" and taking a siesta in the afternoon. An hour or two at lunchtime will set cleo up for physio, and mean she wont have to be running up to bed at 7 or 8 pm each night, because at the moment thats the time she is completely drained. Getting up stairs is hard work and if she left it any later it may be too difficult for her when tired, so i think this is a good idea. We will try that I think.

Why do we get tired? Ann explained: after stroke we have to concentrate far harder on the things we do, like standing, balancing, walking etc, the result of which we become tired much quicker than we expect because we are used to being able to do all these things second nature. Makes sense I guess, but often we don't realise why.

Tomorrow we are going shopping, and it is really nice to feel that cleo is starting to get a hold on the things we need at home; her shopping list mind is working again, and so I dont have to go armed with various bits of paper to help me remember what we need, cleo has it all covered!

You're My World

You're my world
You're every breath I take
You're my world
You're every move I make
Other eyes see the stars up in the sky
But for me they shine within your eyes

As the trees reach for the sun above
So my arms reach out to you for love
With your hand resting in mine
I feel a power so divine

You're my world
You are my night and day
You're my world
You're every prayer I pray
If our love ceases to be
That is the end of my world for me

With your hand resting in mine
I feel a power so divine

You're my world
You are my night and day
You're my world
You're every prayer I pray
If our love ceases to be
That is the end of my world
End of my world
End of my world
End of my world for me

Day 45 - Keep It Simple.

The mechanics of walking are very complex. We learn these actions without knowing quite what we are doing almost from the day we are born. By the time we can actually walk, we don't have to understand what or why, or how, we just do.

Now, when someone suffers a stroke like cleo, and there is resulting paralysis, as the muscle action begins to return, the brain, because it is having to rebuild the nerve connections that were destroyed when the brain cells were affected by the stroke, creating new pathways, that process needs to be re-learned. The complexity of the process means that it takes a very long time to explain in words how we take a step, from the movement of the foot, to the balance and shifting ones centre of gravity, the knee, hip, and pelvis. By the time all these things have been explained, so you know where to put everything you try to remember all these things and you actually forget what it is you were trying to do.

Now, James the physio is no doubt very good at what he does, and his knowledge and experience are without doubt as good as anyone, but I do feel that sometimes he overcomplicates his instructions to cleo. I was thinking about this today, because whenever cleo walked she seemed to be "locking" her knee backwards, which has the effect of making her ankle unstable, and her balance wrong. I looked at a couple of websites, and examined how we walk, taking note too, of what James had said: if the foot is right, and the weight is on it, it will work, and it won't give way. So, I suggested that cleo try the following: concentrate solely on the foot, place it not too far in front of her, keeping the foot under the line of her shoulder, and facing the direction that she wants to walk, keeping the feet about a shoulder's width apart. Result: everything fell into place, simply by getting the foot right, she didn't need to worry about the leg, knee or hip, because that all followed naturally, and very little knee locking, because the knee will naturally flex slightly if that position is right. Suddenly the walking seemed far easier.

To prove a point we left the wheelchair in the car when we got to the hospital for physio today, and cleo walked into the gym, supported by me of course, but much happier and far more stable than she has been so far.

I still think that the recovery cleo has made so far is amazing: from the dense stroke she had only 6 weeks or so ago to be walking again, and out of hospital too says a lot for her strength of character and determination to succeed.

Include Me In

cleo needs to be involved in the house, it's important to her, and she has been very frustrated of late that she cannot contribute or feel involved. As yet this week we hadn't gone shopping so, i thought, she can do a weeks shoping here: I sat her in front of the pc, and said, "Go Sainsburys, do the shopping online". She did, and that way she can make the shopping choices that she always does, and feel "useful". Not quite the same I know, but good enough. It is important that we include her in the things we do, and don't exclude her from what we are doing or saying. Too often people like that become isolated, and alone. That will never happen with cleo. Apart from anything else she talks too much to be excluded. It's impossible to ignore her.

One thing we have learned this week, is that whatever you are doing you have to plan it, thoroughly and in advance: there is no popping to the shops any more. It takes 15 minutes at least to get cleo into the car, then the same to get out and into the shop, and the same on the way back. The temptation of course is to say "I will pop to the shop", leaving cleo at home, but of course thats how people again become isolated and left out. If we did that all the time then she would hardly ever get out of the house, and that would not be good for her. That too will never happen .

Walking Back To Happiness

Funny, but it's true
What lonliness can do
Since I've been away
I have loved you more each day

Walking back to happiness, woopah oh yeah yeah
Said goodbye to lonliness, woopah oh yeah yeah
I never knew I'd miss you
Now I know what I must do
Walking back to happiness
I shared with you (Yay, yay, yay, yay ba dum be do)

Making up for things we said, woopah oh yeah yeah
And mistakes to which they led, woopah oh yeah yeah
I shouldn't have gone away
So I'm coming back today

Walking back to happiness I threw away (Yay, yay, yay, yay ba dum be do)
Walking back to happiness with you
Said farewell to lonliness I knew
Laid aside foolish pride
Learnt the truth from tears I cried

Spread the news I'm on my way, woopah oh yeah yeah
All my blues have blown away, woopah oh yeah yeah
I'm bringing you love so true
Cuz that's what I owe to you

Walking back to happiness I shared with you (Yay, yay, yay, yay ba dum be do)
Walking back to happiness with you
Said farewell to lonliness I knew
Laid aside foolish pride
Learnt the truth from tears I cried

Spread the news I'm on my way, woopah oh yeah yeah
All my blues have blown away, woopah oh yeah yeah
I'm bringing you love so true
Cuz that's what I owe to you

Walking back to happiness I shared with you (Yay, yay, yay, yay ba dum be do)
Walking back to happiness again
Walking back to happiness again

Day 44 - Gee Mr Tracy

Physiotherapy today was interesting. James asked if we had an problems that had arisen out of spending time at home. Our main concern is cleo not being able to get herself up into a sitting position from lying on the bed. So, James explained the best way, step by step, and we will work on that over the next few days. After this James had cleo standing and simply moving her left leg back and forth through a stepping motion, along with some other bending exercises. Finally he walked her up to one end of the gym and turned her round, then told her to walk...without help.....I drew in a deep breath, and ....yesssssss.. one step, then another, very shaky, and not too controlled but she did it, walking without any support. When she walks, because of the concentration and presently the lack of a little control she resembles a Thunderbird puppet, but after only 6 weeks thats a bloody miracle in my book!

It was like fireworks or something should have gone off!

James explained that you simply have to take those chances sometimes, and we agree...if you don't push yourself, then you become to reliant on the aids that are given, and we don't want that. I am convinced James is sure that cleo will walk again. We are too.

James also gave us some other standing exercises to do at home, which we will start tomorrow: an example, to allow the body to "remember" it's natural balancing reflex, stand upright, and get someone else to try and move the hips/pelvis in a twisting motion, while the patient resists that motion. This of course gets the natural reflex of balance which we all take for granted working again.

So, an unexpected but very rewarding hour with James saw us back in the car and coming home via the chippie! Cleo then insisted on standing at the kitchen counter and serving the fish and chips, then she made tea too. Once dinner was ser ved she then amazed the girls by walking across the kitchen on her own, in her shaky "Thunderbird style" walk to take her place at the table. Eye popping stuff!! Gee Mr Tracy Thunderbirds are GO.. F.A.B.

On Angels Wings

I would die for you
Lay down my life for you
The only thing that means everything to me
'Cause when you're in my arms
You make me prouder than
Than anything I ever could achieve
And you make everything that used to seem so big
Seem to be so small since you arrived

On angel's winds, an angelical formation
Angel's wings, like letters in the sky
Now I know no matter what the question
Love is the answer
It's written on angel's wings

And I often wonder why,
Someone as flawed as I
Deserves to be as happy as you make me
So as the years roll by
I'll be there by your side
I'll follow you wherever your heart takes me
Cause you make everything that used to be so big
Seem to be so small since you arrived

On angel's winds, an angelical formation
Angel's wings, like letters in the sky
Now I know no matter what the question
Love is the answer
It's written on angel's wings

Now anyone who's felt the touch of heaven in their lives
Will know the way I'm feeling, looking
In my baby's eyes
That's why I can't bear to be too far away
I know that god must love me cause
He sent you to me on angel's wings

On angel's winds, an angelical formation
Angel's wings, like letters in the sky
Now I know no matter what the question
Love is the answer
It's written on angel's wings

Love is the answer
It's written on angel's wings

Day 43 - The Tardis Effect

While I worked last night, cleo and the girls were spending their first night at home without me. Things went ok, except that Sarah had a little trouble getting cleo out of bed this morning, but that was mostly because of the way our lounge was organised meaning cleo was having to get out of the sofa bed on her weaker side, which she cannot do as yet.

Quart into a Pint Pot (the Tardis effect)

So, we set out to redesign the lounge, in order to create some extra space, both for the nights when cleo sleeps downstairs, and for daytimes when space is at a premium, especially at times when cleo is using her wheelchair. As I have said before we don't have much space so something had to give, and in this case the tardis effect was created by losing the second desktop pc we had in the lounge. Master plan is that the pc will go upstairs to our bedroom with a desk for times when cleo is up there. The new laptop also gives us the option of another pc anywhere in the house because that is wireless.

So, after much shoving and moving of furniture and pc's we arrived at a solution that seems to have created some more space. The problems that cleo had this morning suggested that we need some practice too, so that we have a definite method for getting off the sofa bed. We will work on that this week, before i work again next friday.

Old Friends....

I regularly follow the statistics from this blog to see who is reading it, and where those readers come from. I noted a link from a community owned by a couple whom we were friendly with some years ago, but with whom we had lost touch for various reasons. Tonight, we made contact with that lost friend again, and i hope that the friendship continues from now. Without cleo having the stroke I doubt we would ever have been in touch again, so i suppose that is a good thing to come out of this episode. As the saying goes, life is too short.....

cleo spent most of today in the wheelchair, which i think was needed as she was pretty tired after Christmas, and new year, and a bit of a sleepless night on the sofa bed last night. While it's good that she works her leg and practises the techniques to relearn the actions that will eventually see her walk unaided again, you can of course do too much, and i think that a rest from that will have done her good today. The girls are back to school tomorrow so cleo and I will have some time during the day to start getting better roganised around each room in the house, making sure that things which cleo might need are in accessible places which she can get at from her chair, or however she is moving around. That will be something that might take a few days but i am sure it will be a worthwhile effort, because it may afford cleo a little independence which presently she does not have, and which i would rather she did.

Day 42 - New Year, New Start

So, 2005 ended and frankly cleo and I, not surprisingly, were happy to see it finished. This year had started out well for us, getting our new house, and being financially stable after some real struggles over the last few years during my divorce, we were starting to make plans for the next few years.

We ought not to wallow in self-pity but the question we ask each other now is "why us?". The answer to that we don't know, but it just doesn't seem fair somehow. We had waited so many years to meet each other and finally found complete happiness in our lives, and suddenly this bolt from the blue, as unexpected as it was frightening has turned our world upside down. All those plans must now be either changed or shelved for the moment.

I have to admit that at midnight last night, as the chimes from Big Ben rang out from the TV cleo and I stood and held each other, in tears. We will of course make the best of what we have, and I know that cleo will harness that driving force that is so much an integral part of her to make the best possible recovery, but even so, this year will not be what we had envisaged some 6 weeks ago.

The girls had stayed at their dad's last night, and so cleo and I woke to a quiet house this morning, which gave us time to get up, get cleo downstairs, and into the shower. It's so funny, that the simplest things we don't even think about become problematic right now, because cleo needs assistance to move: simply getting in and out of the bath takes several minutes. We think nothing of stepping into a bath, but for cleo right now it's a major obstacle, like many other things which we take for granted.

Another odd observation: since the stroke cleo, who is normally vegetarian, has been wanting to eat meat, particularly bacon, and sausages! So, breakfast this morning was bacon sandwiches. Maybe her body is telling her she needs the proteins in the meat, or maybe the stroke has affected her in more subtle ways that mean her choice to be vegetarian, taken some several years ago, is no longer valid for her? Who knows.

Another milestone this evening for us, as a family is that I have to work (I work in London, and do night shifts) so responsibility for cleo's welfare is with her daughters. They will manage fine I am sure, and they know that should they need me I am at the end of a phone at all times. We also took the decision that when I am at work cleo will not climb the stairs, but will sleep in the lounge on the sofa bed, and tonight, as it's their first time without me there, Hannah has said she will sleep with her mum on the sofa bed.

It might be a good time here, at the start of this year, to pay tribute to the care and commitment of the staff at the hospital who have looked after cleo for the last 6 weeks. I have mentioned several times that they suffer from lack of resource both in terms of money for the most basic medical needs, and of staffing levels that frankly are appalling. In the ward where cleo was treated there were some 31 patients, all of whom were suffering from strokes. Every one of those people is dependent to a lesser or greater extent on the staff to get them up, feed them, dress them, wash them, and do all those things which they cannot. Mornings in the ward are manic, with all that happening, and sometimes there are only six or seven staff there.

The salaries paid to the nursing staff are not that good of course, and finding staff who actually want to work in that environment is not easy: even the "bank" and agency nurses are not always available. These people devote their working day to ensuring that those who need it are given the best quality of care that is possible, under the most trying of circumstances. While we might moan about it, if you analyse what the staff have to do, one wonders how they ever manage.

It's only anecdotal but as an example, we heard a couple of weeks ago that the hydrotherapy pool at the hospital had been closed. The reason? There was no money to pay for the chlorine to go in the pool. Now, I ask this question: How can a physiotherapy department that relies on hydrotherapy for much of its treatment of orthpaedic patients, among others manage without such a basic tool as this, and for the cost of some chemicals to add to the water? Maybe there are just too many administrators: walk round the hospital during the day and you see any number of people that are obviously not medical staff walking round with clipboards, papers and files. Maybe those high level hospital administrators should consider whether they really need their inflated salaries and bonuses? I bet one administrator salary would pay for that chlorine? I also wonder just how many of those people would be prepared to deal with the crap (literally!) that nursing and auxilliary staff have to in the middle of the night? Not many I bet?

Political rant over for now.

So, cleo and I enter 2006 with high hopes for her recovery, and while we are under no illusion that any of it will be easy, we will work together, as a team, and in conjunction with the carers from the hospital and other agencies to get the best from what there is.