Kay may have had a stable week, but I've had a very bad one indeed. On Tuesday night I didn't sleep a wink all night. It was a very strange experience. I was extremely tired but not at all sleepy. It felt like my body had forgotten how to go to sleep. Everytime I closed my eyes, instead of drifting away into sleep, I was just left staring at the inside of my eyelids, completely awake. I did everything I could tink of to try to sleep. After the first hour I took one of the over-the-counter sleeping tablets that I've used with success before. No effect. Then I tried adding Melatonin to the cocktail. No effect. Then I tried listening to music. No effect. Paradoxically, I didn't bother trying to read because I knew I was too tired to concentrate. Wierd.
The result was that on Wednesday I was completely broken. I had an appointment at 7:45am, but I couldn't get out of bed in time. Everytime I stood up the world started spinning to the extent that I felt nauseous. I had stuff to do so eventually I scraped myself together and managed to get to the office at midday. Once there I discovered that I wasn't really much use. I had to read a paper for someone and the words just blurred before my eyes. I had to read sentences three times before they meant anything to me. Jeez. Still, I got done what needed to be done and then retreated back to the hospital.
Wednesday night I slept at the McD house. This was marginally better, I managed to get 6 hours or so of 'normal' sleep. But on Thursday night I again couldn't sleep. Thursday was our wedding anniversary. Marion suggested that we eat together and spend the night at the McD house. Given the disasterous evening that we had the last time that we tried the same thing, I was pretty cautious about the idea. I negotiated it with Kay, who appreciated that it was our anniversary. And I instructed the nurse to not let Kay phone us via Skype. If she need us then the nurse should phone. We also agreed with Kay that we would come and tuck her in when we came back from eating.
In the end we had a good evening. The only problem was that we made the mistake of telling the owner of the restaurant that it was our anniversary, with the result that we, or rather I, left the restaurant rather the worse for wear. Thus, when it came to trying to sleep, my lack of sleepiness was compounded by a growing headache. And so I spent the night trying to find some way, some angle, some pattern of thinking or even not thinking, that would allow me to get to sleep. No luck, I saw every hour of the night.
Since I had to drive from Nijmegen to the office and my new laptop was waiting for attention and bearing in mind that I had to prepare a financial planning update, I eventually gave up and got out of bed early. I arrived at the office with enough time to sort out the basics of the laptop and install MS Office before everyone else started to arrive. But frankly I felt dreadful the whole day, dizzy, nauseous and disoriented. It was extremely difficult to concentrate on anything. Eventually, I gave up and went home. I dozed on the bed for an hour or so and then lamely blundered around the house for a while, then ended up continuing installing my laptop. Eventually Nattie & I went to bed at 9.30pm or so.
I'm sat here now feeling like there's an electric current of tiredness running through my head. I'm going to do some cycling to see if that can either improve my head or make me tired enough to sleep. But I've decided to cycle inside on the simulator as I have no idea how far I'm going to feel like going and I don't want to run out of juice 50km away from home. I've also arrange to get a (fantastic) massage this afternoon to see if that can help.
For me personally, this is the worse stage of the whole story so far. The only major light on the horizon is that it looks like the business has some interesting opportunities developing. But that aside, I have never felt worse in my life and I have no idea how this tiredness will resolve itself. I have no choice but to continue what I'm doing, both home, work and Kay. But it's never been harder than now.
Saturday, 31 July 2010
Saturday, 24 July 2010
The Quest for Mental Equilibrium
I've just spent 2 hours pounding round one of my standard cycle routes, trying to burn out of my mind all negative thoughts about Kay's current situation. This is tough because it means letting my fears out and confronting them, telling myself that each fear is unfounded for this or that reason. But one's mind can work pretty hard at pulling one down and my counter arguments are weakening. I find my mind thinking truly dreadful thoughts that I can't bring myself to mention here and my defenses against such thoughts are tired.
But cycling is very theraputic, although about half way round I was fighting myself so hard that I was hammering along at 34kmph with my heart rate running at +95% hr max. I could feel that given my current state this was not doing me much good so I slowed down. Less mentally intense, but less likely to burn me out. I arrived back home having partially cleared my mind, but not to the usual extent. Still, better than nothing.
I sat down in the kitchen to drink and eat something when the phone rang. Marion, in a tense voice (oh-oh), telling me that Kay wants to talk to me. Kay, crying, says: "Daddy, I think that I'm dying. I feel like my body is giving up."
I'd just spent the last 120 minutes trying to convince myself that this indeed is not the case. And I'd not been entirely successful. Now how to do a better job with Kay? And Marion?
Well, there's no substitute for honesty. I told Kay that the future is not certain and that we don't know how this will end. But that at the moment there's no reason to think that it won't end happily, no reason to think that she won't recover. I explained that this fight is in our heads and that's where these thoughts come from and that we have to try to be strong and to fight them. This is what we can contribute to the battle to get Kay healthy again. I told her that a week of the pain that she's had plus being locked up in the same room for seven weeks is enough to make even the strongest person miserable and to make them doubt that they can get well again. I said that Mummy & Daddy feel it too, that we are also very low. But that we all have to do our best and be strong and think positive thoughts.
Kay came around. She is indeed a fantastic child and she pulled herself together. I promised that we would continue to support her and offer our strength and love all we can. She said that she felt better, that she hadn't got so much pain from her bladder today. But she said that she's very tired and I told her that that will also contribute to her feelings.
I then had to do a similar job with Marion, who is terribly upset with the idea that Kay has been carrying these thoughts around in her head. I told Marion that she must try to find some mental equilibruim since Kay needs us to be strong. Marion too did her best to pull herself together.
Now, I guess that I just need another couple of hours on my bike...
But cycling is very theraputic, although about half way round I was fighting myself so hard that I was hammering along at 34kmph with my heart rate running at +95% hr max. I could feel that given my current state this was not doing me much good so I slowed down. Less mentally intense, but less likely to burn me out. I arrived back home having partially cleared my mind, but not to the usual extent. Still, better than nothing.
I sat down in the kitchen to drink and eat something when the phone rang. Marion, in a tense voice (oh-oh), telling me that Kay wants to talk to me. Kay, crying, says: "Daddy, I think that I'm dying. I feel like my body is giving up."
I'd just spent the last 120 minutes trying to convince myself that this indeed is not the case. And I'd not been entirely successful. Now how to do a better job with Kay? And Marion?
Well, there's no substitute for honesty. I told Kay that the future is not certain and that we don't know how this will end. But that at the moment there's no reason to think that it won't end happily, no reason to think that she won't recover. I explained that this fight is in our heads and that's where these thoughts come from and that we have to try to be strong and to fight them. This is what we can contribute to the battle to get Kay healthy again. I told her that a week of the pain that she's had plus being locked up in the same room for seven weeks is enough to make even the strongest person miserable and to make them doubt that they can get well again. I said that Mummy & Daddy feel it too, that we are also very low. But that we all have to do our best and be strong and think positive thoughts.
Kay came around. She is indeed a fantastic child and she pulled herself together. I promised that we would continue to support her and offer our strength and love all we can. She said that she felt better, that she hadn't got so much pain from her bladder today. But she said that she's very tired and I told her that that will also contribute to her feelings.
I then had to do a similar job with Marion, who is terribly upset with the idea that Kay has been carrying these thoughts around in her head. I told Marion that she must try to find some mental equilibruim since Kay needs us to be strong. Marion too did her best to pull herself together.
Now, I guess that I just need another couple of hours on my bike...
Friday, 16 July 2010
The Devil's Joke
I've said before that I feel as though I'm living in Hell. I still have the creeping feeling that my flight back from India last October was actually shot down by a Taliban ground-to-air missile over Afghanistan, that I died at 36,000 feet and that since then I have been living in Hell.
And what a perfect sort of Hell is it, one that Dante could not and did not imagine in his Inferno. This Hell is not about Fire and Brimstone. This Hell is about subtlety, confusion, disorientation and plucking my deepest, most painful heartstrings. In this Hell everything is just like my previous life, only twisted in some Machiavellian way. My daughter is being tortured for no reason that I can discern, there's nothing I can do to stop it, there is no price that I have been asked to pay to stop it, the torture is just going on and on and is seemingly endless. I'd rather be roasted over glowing coals. But the even more confusing and disorienting thing is that I can still talk to other people who are not living in Hell. The perfection is complete!
But the twist in the story is that Hell offers you an the opportunity for an evening off. Last week various members of the professional staff at the hospital told Marion and I that it was essential that we spent time looking after ourselves. Whether or not this was a concerted effort to get us to think abouts ourselves or whether it was just coincidence, I don't know. But the end result was that on Monday evening Marion suggested that she & I had dinner together on Tuesday evening, followed up by a shared night in a hotel. The moment that Kay heard about this idea she started putting up roadblocks. So we arranged for Lauren to babysit her for the night and we assured her that we would be close by, etc.
Tuesday evening, Marion arrived in Kay's room around 6pm together with Lauren. The idea was that we would leave at 7pm to eat and find out if we still had a relationship or whether we were back to our blind date origins (Yes, Marion & I met on a blind date). Kay more or less immediately started kicking up a, medically justified, fuss. Marion gave her her medication too fast, as a result of this gross mistake Kay was now feeling sick, it was all Marion's fault, what a god-awful mother she is, now she needed to sit with Daddy, etc, etc.
The duty nurse was absolutely adamant that we were going to go out. I think that she would have bodily thrown us out if we had shown any sign of weakness. This nurse is very involved with us and is an absolute wonder and promised to make sure that Kay was Ok, etc. So off we went, all full of the idea that we could have a normal evening and enjoy ourselves, full of the idea that we'd been given an evening off from Hell.
We checked into the hotel and rapidly did what any married couple who'd not slept in the same room for six weeks would have done, we headed for the bar and the resturant. Once seated and equipped with double-gin-and-tonics, we rapidly discovered that, apart from Kay, we had nothing to talk about. Worse than a blind date, thus. I was too tired to talk about the business and, frankly, everything else seemed irrelevant. But fortunately the problem was solved for us by Marion's phone, which kept on ringing. It turns out that Marion, having better social skills than me, is constantly being phoned by her circle of friends. I didn't know this so it came as quite a surprise to discover that I wasn't even offered the opportunity not to have a conversation with my wife, other people filled in the gap for me.
In the end I retaliated by making calls of my own. So you can imagine the scene before you: a couple married for 10 years sharing a table with each other for the first time in months, talking to anyone else but each other. Shame this principle didn't extend to the bedroom, I would have been rather curious to end up sharing it with a bunch of Marion's friends... (but probably too tired to do anything other than watch)
Anyway, this pretty picture didn't last. Shortly after we'd finished our starters, my phone rang. Obviously it wasn't any of my friends, so the only alternative I could think of was Kay. And I wasn't wrong. She phoned me, screaming that she was feeling sick and that she felt that she was going to throw up and that she needed us there with her, etc. I tried to calm her down, I said that Lauren would look after her and that the nurse would give her a big hug. But while I was spouting these homilies, Kay threw up. I ended up with Lauren on the line who told me that Kay had thrown up her NG tube. I told Lauren that I'd leave them to it.
About an hour later Kay phoned Marion. This time she was upset and angry that she had phoned home to talk to Natasha but that there was no answer and how could Natasha possibly not be waiting to talk to her? Marion had a hard time talking her out of her tree but eventually got her quieted. A little while later Kay phone Marion again. (Now at this point you may wonder why we were answering the phone at all. Thing is that Kay was phoning using Skype which reports a "Blocked" caller-id. Since a blocked caller-id could be anyone, eg our security company, we felt that we had to answer). This time she was upset and angry that we had dared to leave her and that she was feeling terrible and when were we going to be back, etc, etc.
By this time Marion and I were ringing like bells with guilt. We were both sat at the table fighting back tears and feeling like very neglectful parents. I mean, how could we possibly put an evening of not communicating with each other and not engaging in any other sort of (social) intercourse in front of dutifully looking after Kay? Just what sort of people are we?
The whole thing was a huge disaster. We retired to bed, tired, miserable and feeling very guilty, with Kay's accusations of parental neglect burning our souls. We agreed that the next time that we wanted to eat together we should just get an Indian take-away and eat it in Kay's room, the path of least resistance.
So the Devil's Joke is this: A night away from Hell is worse than Hell itself.
And what a perfect sort of Hell is it, one that Dante could not and did not imagine in his Inferno. This Hell is not about Fire and Brimstone. This Hell is about subtlety, confusion, disorientation and plucking my deepest, most painful heartstrings. In this Hell everything is just like my previous life, only twisted in some Machiavellian way. My daughter is being tortured for no reason that I can discern, there's nothing I can do to stop it, there is no price that I have been asked to pay to stop it, the torture is just going on and on and is seemingly endless. I'd rather be roasted over glowing coals. But the even more confusing and disorienting thing is that I can still talk to other people who are not living in Hell. The perfection is complete!
But the twist in the story is that Hell offers you an the opportunity for an evening off. Last week various members of the professional staff at the hospital told Marion and I that it was essential that we spent time looking after ourselves. Whether or not this was a concerted effort to get us to think abouts ourselves or whether it was just coincidence, I don't know. But the end result was that on Monday evening Marion suggested that she & I had dinner together on Tuesday evening, followed up by a shared night in a hotel. The moment that Kay heard about this idea she started putting up roadblocks. So we arranged for Lauren to babysit her for the night and we assured her that we would be close by, etc.
Tuesday evening, Marion arrived in Kay's room around 6pm together with Lauren. The idea was that we would leave at 7pm to eat and find out if we still had a relationship or whether we were back to our blind date origins (Yes, Marion & I met on a blind date). Kay more or less immediately started kicking up a, medically justified, fuss. Marion gave her her medication too fast, as a result of this gross mistake Kay was now feeling sick, it was all Marion's fault, what a god-awful mother she is, now she needed to sit with Daddy, etc, etc.
The duty nurse was absolutely adamant that we were going to go out. I think that she would have bodily thrown us out if we had shown any sign of weakness. This nurse is very involved with us and is an absolute wonder and promised to make sure that Kay was Ok, etc. So off we went, all full of the idea that we could have a normal evening and enjoy ourselves, full of the idea that we'd been given an evening off from Hell.
We checked into the hotel and rapidly did what any married couple who'd not slept in the same room for six weeks would have done, we headed for the bar and the resturant. Once seated and equipped with double-gin-and-tonics, we rapidly discovered that, apart from Kay, we had nothing to talk about. Worse than a blind date, thus. I was too tired to talk about the business and, frankly, everything else seemed irrelevant. But fortunately the problem was solved for us by Marion's phone, which kept on ringing. It turns out that Marion, having better social skills than me, is constantly being phoned by her circle of friends. I didn't know this so it came as quite a surprise to discover that I wasn't even offered the opportunity not to have a conversation with my wife, other people filled in the gap for me.
In the end I retaliated by making calls of my own. So you can imagine the scene before you: a couple married for 10 years sharing a table with each other for the first time in months, talking to anyone else but each other. Shame this principle didn't extend to the bedroom, I would have been rather curious to end up sharing it with a bunch of Marion's friends... (but probably too tired to do anything other than watch)
Anyway, this pretty picture didn't last. Shortly after we'd finished our starters, my phone rang. Obviously it wasn't any of my friends, so the only alternative I could think of was Kay. And I wasn't wrong. She phoned me, screaming that she was feeling sick and that she felt that she was going to throw up and that she needed us there with her, etc. I tried to calm her down, I said that Lauren would look after her and that the nurse would give her a big hug. But while I was spouting these homilies, Kay threw up. I ended up with Lauren on the line who told me that Kay had thrown up her NG tube. I told Lauren that I'd leave them to it.
About an hour later Kay phoned Marion. This time she was upset and angry that she had phoned home to talk to Natasha but that there was no answer and how could Natasha possibly not be waiting to talk to her? Marion had a hard time talking her out of her tree but eventually got her quieted. A little while later Kay phone Marion again. (Now at this point you may wonder why we were answering the phone at all. Thing is that Kay was phoning using Skype which reports a "Blocked" caller-id. Since a blocked caller-id could be anyone, eg our security company, we felt that we had to answer). This time she was upset and angry that we had dared to leave her and that she was feeling terrible and when were we going to be back, etc, etc.
By this time Marion and I were ringing like bells with guilt. We were both sat at the table fighting back tears and feeling like very neglectful parents. I mean, how could we possibly put an evening of not communicating with each other and not engaging in any other sort of (social) intercourse in front of dutifully looking after Kay? Just what sort of people are we?
The whole thing was a huge disaster. We retired to bed, tired, miserable and feeling very guilty, with Kay's accusations of parental neglect burning our souls. We agreed that the next time that we wanted to eat together we should just get an Indian take-away and eat it in Kay's room, the path of least resistance.
So the Devil's Joke is this: A night away from Hell is worse than Hell itself.
Saturday, 19 June 2010
Mind Fog
In the last week I have reach a new level of tiredness like nothing I've yet experienced - though of course we have a habit of forgetting just how awful past experiences were at the time. I seem to have accumulated a (quality of) sleep debt that I suspect can be measured on the same scale as the national budget deficit. Worse, it seems to have entered some kind of positive feedback loop, meaning that I'm so tired that for some reason I'm beyond being able to sleep.
For sometime now, but most noticably during the last few weeks, the moment that my head touches the pillow my mind seems to snap wide awake. I end up struggling to get to sleep for hours on end, drifting backwards and forwards from dozey wakefulness to light but very dreamy and unrestful sleep. My mind essentially doesn't know the difference between one state and the other.
This is difficult to explain, but in normal life during difficult or stressful periods when I go to bed my mind has the habit of naturally polarizing itself towards whatever problem is current. If I don't manage this properly, as I approach the point of falling asleep, my mind will spiral off towards thinking about the most extreme consequences of the problem at hand and, more or less literally, a shock current of fear will jump through my mind/body, instantly returning me to full wakefulness again. If this cycle repeats more than two or three times the chance of me falling to sleep tends towards zero and a very long night ensues.
Over the years I have developed various mental tactics to combat this problem, all of which centre around setting my mind to thinking about something stronger and nicer than the problem at hand. For instance, thoughts of flying, aerobatics or skiing have long been mental antidotes to the daily problems of running a high tech startup and the fine financial balancing act that that entails. More recently Marion and I got our yacht sailing licenses and sailed with the kids around the Greek islands for a week. The idea of at some point in the future being able to buy a nice 45ft sailing boat and having the time to throw an anchor overboard in some quiet bay has fended off many a dark bedtime thought.
But the last months have been so difficult that I have run my store of nice, powerful antidote thoughts entirely dry. Also, at the moment there is so little to look forward to in our future. We have to live our lives day by day, so thinking about doing something nice is about as useful as making plans for First Contact with Aliens. I've stopped flying & aerobatics, we missed out on skiing last season and there's no chance that we'll be able to go sailing this season. Family life has been watered down such that I get to see Marion for about 30 mins per day and Natasha every other day just before she goes to bed. Apart from seeing Nattie, being at home is not very useful, except to get a change of clothes. There's no time to do anything at home and there's nothing to do at the hospital either. (I should add at this point that Lauren has recently taken to phoning more often and of having something to say when she does phone, which is quite nice).
The result of all this is that when I go to bed there's nothing in my head that I can use to fight off the furies-of-darkness. I have then resorted to the simple tactic of staying awake until I'm absolutely exhausted in the hope that when I put my head on the pillow I will blink out before the furies have time to gather themselves. This tactic doesn't always work, but it does always guarantee that I don't get enough sleep. On the other hand, trying to catch up with the sleep deficit by going to bed early doesn't appeal either for the obvious reason: I'm afraid that if I go to bed too early it will give the furies plently of time get themselves organized and I'll end up taking a right old beating.
The last week or so has been some kind of hell in this respect and the only solution that I have found is a chemical one. My good friend Ron has been supplying me with some sleep-inducing tablets that one can get over-the-counter in the US. One of these plus a couple of melatonin tablets, which I use for dealing with jetlag, often, but not always, helps knock my mind into submission, allowing me to fall asleep. But I hate chemical solutions, they are artificial, lead nowhere and simply repress the underlying problem rather than help solve it. So sometimes I get bloodyminded and refuse to take a tablet just to show that I don't really need it, most often to discover that actually I do.
Last night was a case in point. I was completely mentally exhausted when I got to the hospital. Let me try and explain what that feels like: firstly it feels as if my head is stuffed with wool. There's a kind of pressure on the inside of my skull that feels as if its having the effect of slowing down my thoughts. My short term memory doesn't work very well, I'm having to take notes about stuff constantly or rely on someone else's memory. My medium/long term memory seems to operate in slow motion: I'm perfectly aware that I know something but I feel like I'm stood in a queue at the library waiting for the given fact or thought to be stamped with a return date and handed out. This leads to a difficulty to concentrate. I can break through the concentration problem to some extent just by mental determination - work is pretty damned interesting at the moment, which is an incentive. This is how I get through the day at office. It's different when I'm at home or the hospital, it's much more difficult to find the mental reserves to break through the concentration barrier, not least because it takes quite a lot of energy.
But the worst thing is a constant feeling of dizziness that varies only in degree. When I got to hospital last night I felt dizzy standing on my feet with my eyes open. Now, sitting down and supposedly being more 'rested', if I close my eyes I start to feel dizzy. If I have a bad night, I wake up in the morning feeling dizzy, with the room washing around like I woke up in my imaginary yacht in a medium sea. I've taken to lying in bed until this feeling largely passes, which means I'm getting up rather late at the moment.
Back to last night, the problem with being so tired is that I don't feel like doing anything. This just makes the current stay in hospital pass even more slowly. I'm too tired to read these days, I'm fed up with computers, impatient with rubbish TV and therefore just plain bored and Irritable (capital intended). I'm filling in my time playing Suduko puzzles on my iPad, but even that is starting to become rather jaded as my foggy brain isn't prepared to or capable of absorb(ing) the tactics needed to solve more difficult puzzles and the less difficult ones I can now knock off in a few minutes.
So I thought I'd pass the time by watching the England match. Ha, what a bunch of cowboys. I was sat there trying to recall every single word I could that would describe their play: "pathetic" was the first to spring to mind (though nothing actually "springs" in my mind at the moment). Anyway, I gave up trying to entertain myself and went to bed around 11pm. The moment that my head touched the pillow my mind went into overdrive. I knew instantly that I wasn't going to sleep properly. My mind meandered around from one thing to another. I kind of knew when I started "sleeping" since the flow of thought passed from a stream of real things to a stream of unreal or absurd things. But equally it passed just as easily back again. And as it came back I would remember the unreal stream of thought and realise that maybe I'd just been vaguely asleep. At the same time I remained aware of what was going on in Kay's room. If someone walked in I was instantly awake.
An hour and half passed like this until Kay complained of feeling sick and eventually was sick. It was 1.30am when she was settled again and again I tried to sleep. The same thing happened. I tried a new tactic: listening to an audio book, normally guaranteed to put me to sleep if I'm not driving the car. But no good, I'm now hooked on a David Hewson novel.
Around 4am I gave up and dug out one of Ron's tablets. Around 4.30am I guess that I fell asleep properly. But I woke up at 7:15, as usual, feeling just indescribably dreadful. I refused to move until 8:30 when the day nurse came in, needing to reinstall Kay's NG tube. As a result I have been feeling pretty damned awful all day. I have left the parent camp-bed out and have been lounging around, trying to rest. But that's barely possible here during the day.
This evening we had planned for Marion & Nattie to come over. I was looking forward to spending an evening with them and, with a little luck, the three of us sleeping in the McD house. But Marion just phoned to say that Nattie is having huge fun at an end-of-hockey-season competition and party and doesn't want to leave it. Nattie needs to have some fun, so fair enough. But I guess that that leaves me on my own with a sleeping Kay for yet another night.
You have no idea how much I'm looking forward to it.
For sometime now, but most noticably during the last few weeks, the moment that my head touches the pillow my mind seems to snap wide awake. I end up struggling to get to sleep for hours on end, drifting backwards and forwards from dozey wakefulness to light but very dreamy and unrestful sleep. My mind essentially doesn't know the difference between one state and the other.
This is difficult to explain, but in normal life during difficult or stressful periods when I go to bed my mind has the habit of naturally polarizing itself towards whatever problem is current. If I don't manage this properly, as I approach the point of falling asleep, my mind will spiral off towards thinking about the most extreme consequences of the problem at hand and, more or less literally, a shock current of fear will jump through my mind/body, instantly returning me to full wakefulness again. If this cycle repeats more than two or three times the chance of me falling to sleep tends towards zero and a very long night ensues.
Over the years I have developed various mental tactics to combat this problem, all of which centre around setting my mind to thinking about something stronger and nicer than the problem at hand. For instance, thoughts of flying, aerobatics or skiing have long been mental antidotes to the daily problems of running a high tech startup and the fine financial balancing act that that entails. More recently Marion and I got our yacht sailing licenses and sailed with the kids around the Greek islands for a week. The idea of at some point in the future being able to buy a nice 45ft sailing boat and having the time to throw an anchor overboard in some quiet bay has fended off many a dark bedtime thought.
But the last months have been so difficult that I have run my store of nice, powerful antidote thoughts entirely dry. Also, at the moment there is so little to look forward to in our future. We have to live our lives day by day, so thinking about doing something nice is about as useful as making plans for First Contact with Aliens. I've stopped flying & aerobatics, we missed out on skiing last season and there's no chance that we'll be able to go sailing this season. Family life has been watered down such that I get to see Marion for about 30 mins per day and Natasha every other day just before she goes to bed. Apart from seeing Nattie, being at home is not very useful, except to get a change of clothes. There's no time to do anything at home and there's nothing to do at the hospital either. (I should add at this point that Lauren has recently taken to phoning more often and of having something to say when she does phone, which is quite nice).
The result of all this is that when I go to bed there's nothing in my head that I can use to fight off the furies-of-darkness. I have then resorted to the simple tactic of staying awake until I'm absolutely exhausted in the hope that when I put my head on the pillow I will blink out before the furies have time to gather themselves. This tactic doesn't always work, but it does always guarantee that I don't get enough sleep. On the other hand, trying to catch up with the sleep deficit by going to bed early doesn't appeal either for the obvious reason: I'm afraid that if I go to bed too early it will give the furies plently of time get themselves organized and I'll end up taking a right old beating.
The last week or so has been some kind of hell in this respect and the only solution that I have found is a chemical one. My good friend Ron has been supplying me with some sleep-inducing tablets that one can get over-the-counter in the US. One of these plus a couple of melatonin tablets, which I use for dealing with jetlag, often, but not always, helps knock my mind into submission, allowing me to fall asleep. But I hate chemical solutions, they are artificial, lead nowhere and simply repress the underlying problem rather than help solve it. So sometimes I get bloodyminded and refuse to take a tablet just to show that I don't really need it, most often to discover that actually I do.
Last night was a case in point. I was completely mentally exhausted when I got to the hospital. Let me try and explain what that feels like: firstly it feels as if my head is stuffed with wool. There's a kind of pressure on the inside of my skull that feels as if its having the effect of slowing down my thoughts. My short term memory doesn't work very well, I'm having to take notes about stuff constantly or rely on someone else's memory. My medium/long term memory seems to operate in slow motion: I'm perfectly aware that I know something but I feel like I'm stood in a queue at the library waiting for the given fact or thought to be stamped with a return date and handed out. This leads to a difficulty to concentrate. I can break through the concentration problem to some extent just by mental determination - work is pretty damned interesting at the moment, which is an incentive. This is how I get through the day at office. It's different when I'm at home or the hospital, it's much more difficult to find the mental reserves to break through the concentration barrier, not least because it takes quite a lot of energy.
But the worst thing is a constant feeling of dizziness that varies only in degree. When I got to hospital last night I felt dizzy standing on my feet with my eyes open. Now, sitting down and supposedly being more 'rested', if I close my eyes I start to feel dizzy. If I have a bad night, I wake up in the morning feeling dizzy, with the room washing around like I woke up in my imaginary yacht in a medium sea. I've taken to lying in bed until this feeling largely passes, which means I'm getting up rather late at the moment.
Back to last night, the problem with being so tired is that I don't feel like doing anything. This just makes the current stay in hospital pass even more slowly. I'm too tired to read these days, I'm fed up with computers, impatient with rubbish TV and therefore just plain bored and Irritable (capital intended). I'm filling in my time playing Suduko puzzles on my iPad, but even that is starting to become rather jaded as my foggy brain isn't prepared to or capable of absorb(ing) the tactics needed to solve more difficult puzzles and the less difficult ones I can now knock off in a few minutes.
So I thought I'd pass the time by watching the England match. Ha, what a bunch of cowboys. I was sat there trying to recall every single word I could that would describe their play: "pathetic" was the first to spring to mind (though nothing actually "springs" in my mind at the moment). Anyway, I gave up trying to entertain myself and went to bed around 11pm. The moment that my head touched the pillow my mind went into overdrive. I knew instantly that I wasn't going to sleep properly. My mind meandered around from one thing to another. I kind of knew when I started "sleeping" since the flow of thought passed from a stream of real things to a stream of unreal or absurd things. But equally it passed just as easily back again. And as it came back I would remember the unreal stream of thought and realise that maybe I'd just been vaguely asleep. At the same time I remained aware of what was going on in Kay's room. If someone walked in I was instantly awake.
An hour and half passed like this until Kay complained of feeling sick and eventually was sick. It was 1.30am when she was settled again and again I tried to sleep. The same thing happened. I tried a new tactic: listening to an audio book, normally guaranteed to put me to sleep if I'm not driving the car. But no good, I'm now hooked on a David Hewson novel.
Around 4am I gave up and dug out one of Ron's tablets. Around 4.30am I guess that I fell asleep properly. But I woke up at 7:15, as usual, feeling just indescribably dreadful. I refused to move until 8:30 when the day nurse came in, needing to reinstall Kay's NG tube. As a result I have been feeling pretty damned awful all day. I have left the parent camp-bed out and have been lounging around, trying to rest. But that's barely possible here during the day.
This evening we had planned for Marion & Nattie to come over. I was looking forward to spending an evening with them and, with a little luck, the three of us sleeping in the McD house. But Marion just phoned to say that Nattie is having huge fun at an end-of-hockey-season competition and party and doesn't want to leave it. Nattie needs to have some fun, so fair enough. But I guess that that leaves me on my own with a sleeping Kay for yet another night.
You have no idea how much I'm looking forward to it.
Tuesday, 4 May 2010
No Feelings
There has been a very sad death on the ward today, the child in the room next door no less. Leukemia patient and recipient of a bone marrow transplant. And I don't feel anything.
We heard the news this afternoon via the unofficial grapevine, but the basic fact was confirmed later by the staff. In a sense I've had no time to process this event, I've been 'busy' doing various things. I was doing some work on my laptop, we've been out this evening, Kay had to clean her teeth a couple of times, etc. But a little while ago I arrived back at the McD house and sat down in the library, on my own, door shut. It occurred to me that I'd not spent five minutes thinking about the aforementioned event.
So I started to push my thoughts in that direction... ...and met a kind of solid wall of resistance. There seems to be some kind of mechanism in my head that won't let me contemplate the implications of this tragedy. I just cannot imagine... whatever. I have no feelings or thoughts about it.
I'm amazed. I thought that the human mind had some kind of morbid magnet in it that polarized itself towards tragedy, examples being all the rubber-neckers in cars driving past an accident on the motorway or all the other kinds of disaster tourists that we have come to know and love. But in this case my mind is reversed polarized, my morbid magnet swinging definitively away from the contemplation of tragedy.
It's a strange feeling, there are lots of unformed misty thoughts flowing around in my head that would like to find their way through my fingers onto this page. But try as I might to grab one for examination & dissection and it slips out of reach, repelled by the very effort. What is this? A defence mechanism? A kind of subconscious fear of facing an evil? Or have I simply become inured to this kind of fear and suffering? Am I/are we going to end up suffering some kind of post-traumatic stress when we get out of here and try to reenter the real world and recalibrate our senses & values for daily life?
Oh, I'm so tired.
We heard the news this afternoon via the unofficial grapevine, but the basic fact was confirmed later by the staff. In a sense I've had no time to process this event, I've been 'busy' doing various things. I was doing some work on my laptop, we've been out this evening, Kay had to clean her teeth a couple of times, etc. But a little while ago I arrived back at the McD house and sat down in the library, on my own, door shut. It occurred to me that I'd not spent five minutes thinking about the aforementioned event.
So I started to push my thoughts in that direction... ...and met a kind of solid wall of resistance. There seems to be some kind of mechanism in my head that won't let me contemplate the implications of this tragedy. I just cannot imagine... whatever. I have no feelings or thoughts about it.
I'm amazed. I thought that the human mind had some kind of morbid magnet in it that polarized itself towards tragedy, examples being all the rubber-neckers in cars driving past an accident on the motorway or all the other kinds of disaster tourists that we have come to know and love. But in this case my mind is reversed polarized, my morbid magnet swinging definitively away from the contemplation of tragedy.
It's a strange feeling, there are lots of unformed misty thoughts flowing around in my head that would like to find their way through my fingers onto this page. But try as I might to grab one for examination & dissection and it slips out of reach, repelled by the very effort. What is this? A defence mechanism? A kind of subconscious fear of facing an evil? Or have I simply become inured to this kind of fear and suffering? Am I/are we going to end up suffering some kind of post-traumatic stress when we get out of here and try to reenter the real world and recalibrate our senses & values for daily life?
Oh, I'm so tired.
Sunday, 25 April 2010
Hill Climbing
As mentioned previously and in keeping with Marion & Kay, I'm tired. It's the most annoying kind of tiredness: I can't read for very long or at all, I can't keep my concentration on even simple work, but equally I don't feel like sleeping. In fact I keep waking up at 6am no matter how tired I am or where I'm sleeping. This means that I'm pretty damned bored, frankly. I'm using my laptop at lot, browsing around looking at various things, tidying up my disk, cataloging my 18,000 big digital photo library (Lightroom is a wonderful program!) and watching TV via the Slingbox. All "make work" jobs or things that have been lying around waiting for me to have an idle moment.
My usual cure for this kind of tiredness is exercise, I get on my bike and burn up some kilometres. Today I had planned to cycle from Nijmegen to Teuge to have lunch with Frank and do the pilot talk thing for a while. But when I woke up this morning and contemplated the 110km round trip I just couldn't find the energy. In fact it was worse, I didn't feel like cycling at all, just lying in bed and dozing instead. Now I know that this is more or less the worse thing I can do, so I got up, put my cycle gear on and ate breakfast thinking this would help. After breakfast I went back to the McD room and flopped on the bed again. I took me about 30 mins of winding myself up before I got out of the door.
The area around Nijmegen is very beautiful and surprisingly the countryside is rather rolling with some nice hills. I had previously downloaded a GPS cycle route of 53km which covers most of the interesting hill climbs in the area. Now, I'm used to cycling around our house in France where we have real hills, mountains even, so the "bumps" covered by the aforementioned GPS route didn't phase me at all. I thought that I was in for a nice easy ride with some gentle climbs here and there. Such was my confidence that I decided to push the route out a little further to 60km since it was a nice day and I wanted to enjoy the sun for a bit longer.
+25-04-2010,+Elevation+-+Distance.png)
For the largest part of the route my assumption held, but on the initial gentle climbs I could feel tiredness in my legs and I was glad not to have attempted the ride to Teuge. After about 45km I climbed up to a village called "Berg en Dal". I noticed that the GPS track became quite twisty at this point and wondered why. The name of the village should have warned me, it's "Mountain and Valley" in English. The twisty bits of the track turned out to be a series of steep climbs and drops that seemed to cover the "Berg" from every angle. I gather that while relatively short, some of the climbs go over 10%, though I have yet to check this on my GPS.
I have been practicing hill climbing on my bike simulator during the winter and have been putting in some quite good times. Recently I even did the Alp d'Huez on the simulator and put in a reasonable time, all things considered. But I have to say that I struggled with these piddling little Nijmegen hills today. I just didn't have the strength. This is pretty upsetting because it means that my hard won fitness is fading rapidly as a result of all these hospital hours and I will have to do a hell of a lot of work to get it back again. Also, I can feel that I'm dragging around way to many Kgs (again) and that will also have to go - I suspect that I'm carrying a weight penalty of 8-10 Kgs, which is rather a lot of excess weight drag up these hills unnecessarily.
So I guess that as a result of Kay's treatment each of us now has their own metaphorical hill to climb on the road to recovery. Kay, her health. Marion & I bone numbing tiredness, excess weight and decreased fitness.
This is going to take a while.
My usual cure for this kind of tiredness is exercise, I get on my bike and burn up some kilometres. Today I had planned to cycle from Nijmegen to Teuge to have lunch with Frank and do the pilot talk thing for a while. But when I woke up this morning and contemplated the 110km round trip I just couldn't find the energy. In fact it was worse, I didn't feel like cycling at all, just lying in bed and dozing instead. Now I know that this is more or less the worse thing I can do, so I got up, put my cycle gear on and ate breakfast thinking this would help. After breakfast I went back to the McD room and flopped on the bed again. I took me about 30 mins of winding myself up before I got out of the door.
The area around Nijmegen is very beautiful and surprisingly the countryside is rather rolling with some nice hills. I had previously downloaded a GPS cycle route of 53km which covers most of the interesting hill climbs in the area. Now, I'm used to cycling around our house in France where we have real hills, mountains even, so the "bumps" covered by the aforementioned GPS route didn't phase me at all. I thought that I was in for a nice easy ride with some gentle climbs here and there. Such was my confidence that I decided to push the route out a little further to 60km since it was a nice day and I wanted to enjoy the sun for a bit longer.
+25-04-2010,+Elevation+-+Distance.png)
For the largest part of the route my assumption held, but on the initial gentle climbs I could feel tiredness in my legs and I was glad not to have attempted the ride to Teuge. After about 45km I climbed up to a village called "Berg en Dal". I noticed that the GPS track became quite twisty at this point and wondered why. The name of the village should have warned me, it's "Mountain and Valley" in English. The twisty bits of the track turned out to be a series of steep climbs and drops that seemed to cover the "Berg" from every angle. I gather that while relatively short, some of the climbs go over 10%, though I have yet to check this on my GPS.
I have been practicing hill climbing on my bike simulator during the winter and have been putting in some quite good times. Recently I even did the Alp d'Huez on the simulator and put in a reasonable time, all things considered. But I have to say that I struggled with these piddling little Nijmegen hills today. I just didn't have the strength. This is pretty upsetting because it means that my hard won fitness is fading rapidly as a result of all these hospital hours and I will have to do a hell of a lot of work to get it back again. Also, I can feel that I'm dragging around way to many Kgs (again) and that will also have to go - I suspect that I'm carrying a weight penalty of 8-10 Kgs, which is rather a lot of excess weight drag up these hills unnecessarily.
So I guess that as a result of Kay's treatment each of us now has their own metaphorical hill to climb on the road to recovery. Kay, her health. Marion & I bone numbing tiredness, excess weight and decreased fitness.
This is going to take a while.
Thursday, 22 April 2010
The Dreaded Munchies
I have discovered a(nother) flaw in my character that previously I’d only suspected: I have a weakness for munching. Mostly it’s something that a) I have under control and b) that is not too noticeable since I’m usually fairly busy and burn a fair amount of energy. Also in normal life I am not presented with the opportunity to munch, or I avoid it. In October 2008 whilst driving down to France I sat in the car feeling rather porky and decided to do something about it. In the next 6 months I gradually lost 10kg due to a combination of restricted intake, healthy eating (thanks to Marion) and increased exercise. I really was quite pleased with the result and even got into a pair of 32” trousers at the start of summer last year – wow!
However, Kay’s situation destroyed my self control. In the period since she has been ill I’ve put back on around 5kg. In the last months I’ve tried do something about the creeping gain, but I’ve not been very successful, partially because Marion is not in the mood to worry about dietary niceties and partially because I’m often just too tired to do the exercise thing.
Since we have been here though, this munching weakness has become a real demon. For the first week I felt permanently hungry and, because I don’t want to put on the Kgs, I was aware of the fact and trying to combat it. This really only made things worse: I was walking around more or less consciously trying to repress the munchies and consciously failing. I did manage to get a couple of bike rides in to burn off some of the calories and I always take the stairs up to Kay’s ward. But still, this is not much compared to the sedentary lifestyle that being in isolation imposes.
This week things have been a little better: I have taken to avoiding the cafeteria and just eating stuff that Marion has brought in. Since she has little interest in shopping, that’s a self regulating mechanism: bread roll & cup-a-soup for lunch, bread & cheese for breakfast. Evening meals are Appie Happie microwave steamed affairs, which are reasonable and reasonably healthy, I suppose. However, a friend who lives locally has introduced us to an excellent Indian restaurant, so we’re trying to avoid developing an addiction in that direction. Fortunately they don’t deliver, so the throttle is the effort of driving into the centre of town and finding somewhere to park.
At the moment I just seem to be getting more tired. It’s quite nice out and it’s my turn to have some time off today, so I could go for a bike ride. But mostly I feel just like curling up on the bed and snoozing, which won’t help with the munchies, the calorie burn or sleeping properly tonight.
And we have weeks of this facing us. I’m dreading the moment when we get back home and I have to face the bathroom scales again. I bet that I’m going to have to do the “drop 10kg” thing again. Damn!
However, Kay’s situation destroyed my self control. In the period since she has been ill I’ve put back on around 5kg. In the last months I’ve tried do something about the creeping gain, but I’ve not been very successful, partially because Marion is not in the mood to worry about dietary niceties and partially because I’m often just too tired to do the exercise thing.
Since we have been here though, this munching weakness has become a real demon. For the first week I felt permanently hungry and, because I don’t want to put on the Kgs, I was aware of the fact and trying to combat it. This really only made things worse: I was walking around more or less consciously trying to repress the munchies and consciously failing. I did manage to get a couple of bike rides in to burn off some of the calories and I always take the stairs up to Kay’s ward. But still, this is not much compared to the sedentary lifestyle that being in isolation imposes.
This week things have been a little better: I have taken to avoiding the cafeteria and just eating stuff that Marion has brought in. Since she has little interest in shopping, that’s a self regulating mechanism: bread roll & cup-a-soup for lunch, bread & cheese for breakfast. Evening meals are Appie Happie microwave steamed affairs, which are reasonable and reasonably healthy, I suppose. However, a friend who lives locally has introduced us to an excellent Indian restaurant, so we’re trying to avoid developing an addiction in that direction. Fortunately they don’t deliver, so the throttle is the effort of driving into the centre of town and finding somewhere to park.
At the moment I just seem to be getting more tired. It’s quite nice out and it’s my turn to have some time off today, so I could go for a bike ride. But mostly I feel just like curling up on the bed and snoozing, which won’t help with the munchies, the calorie burn or sleeping properly tonight.
And we have weeks of this facing us. I’m dreading the moment when we get back home and I have to face the bathroom scales again. I bet that I’m going to have to do the “drop 10kg” thing again. Damn!
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