Monday, 29 November 2010

One Drug Less

The good news today is that I'm off the antidepressant drug. I have to admit that I've cheated a bit, we had originally agreed with our GP that we'd reduce the dosage in steps over five weeks. But I was suffering from so many side effects that I pushed a little harder and got rid of it in four weeks - this is the same time that it took to build it up in the first place. The result is that the nasty headaches, toothache and shoulder & neck pain that I was suffering a couple of weeks ago have almost gone. My head feels, hmmm... how can I put this? Less restricted? Clearer? Difficult to say.

The reason for starting with this drug all those months ago was because I felt a creeping sense of despair. Certainly I don't have that feeling anymore so either the therapy worked or, more likely, the worst has happened and I'm actually now in the place that I was dispairing of being.

The bad news is that the sleeping problem persists. Last night I attempted a third night without using a sleeping tablet. I tried to induce sleep using melatonin and the lighter drug I'd mentioned previously. But again my mind simply wouldn't relax enough to enter a sleep state. At some point I started to drift off when suddenly I was 'shocked' awake. That was enough. It was 12:30am and I wasn't prepared to fight another night so I gave up and swallowed a damned tablet. I then slept pretty well, but not long enough.

Maybe it's too early for me to be dropping the sleeping meds. My mind just won't seem to rest of its own accord and too often when trying to get to sleep I find myself thinking about Kay, about her last days, about her beautiful persona and other painful things that lead away from peace of mind. I also noticed last night that immediately I turned out the light and closed my eyes my heart started thumping in my chest, an obvious indicator that I was not fit to sleep irrespective of the fact that I felt extremely tired. This is pretty frustrating. I long for the tine that I could put my head on the pillow and blink out for 7 hours or so, to wake up feeling refreshed and looking forward to a new day. Waking up at the moment is an exercise in wishing I could just go back to sleep again, wishing I could slide away from the horrible reality of a world without Kay.

Sunday, 28 November 2010

Update

Finally decided to reattempt sleep at 3:15am, but no luck for at least an hour or so. Eventually the churning 'real' thoughts in my head turned into churnng 'unreal' thoughts and I entered some kind of sleep/dream state. 'Woke up' at 8am, if you can call it that, with a feeling of not having had any mental rest at all. Marion has snored the whole night away, in a ladylike way of course, and is still doing so now. Gggrrrrrrrr.....

Not Sleeping Hell

I'm struggling with the whole sleep thing again. Marion has managed to get herself off the sleeping tablets in the last week. Although this has meant that she's had a week of poor quality sleep, she tells me that one just has to get through it and that now she's sleeping normally. Emboldened by her success, last night I skipped the sleeping pill but took the proferred homeopathic alternative. The result was pretty horrible. 

Initially I couldn't get to sleep at all, I lay in bed tossing and turning, hovering somewhere between sleep and full consciousness. Eventually, at 1.30am, I gave up and took a lighter sleeping tablet that's meant to help one fall asleep. I guess that this did its job because the next thing I knew I was in the middle of a terrifying nightmare. I was descending some stairs when suddenly something I couldn't see grabbed both my wrists. My eyes were closed and I couldn't open them to see what had grabbed me and I was struggling more and more and becoming more and more frightened...  when Marion woke me up. My struggles had woken her up and she realized that something was wrong and so had intervened. I can tell you that I was rather relieved.

I then went back to 'sleep', but continued to dream unabated. Sometime in the early hours I was back in the hospital, in 'our' room on the childrens ward. I decided to go up to intensive care to see how Kay was doing. When I went into her IC room, I found a much younger Kay lying on the floor. She'd obviously fallen out of bed. I started yelling for a nurse and as I looked at Kay her leg suddenly moved. My heart raced. I picked her up and put her on the bed and suddenly she sat up. My heart burst with joy, Kay was back from her coma. She opened her eyes, but was clearly disoriented. I continued yelling for a nurse. Kay then tried to say something to me, but could only mumble. The the nurse came in and I ran out of the room and raced downstairs, burst into the room where Marion was and told her that Kay had woken up from her coma... and then suddenly I woke up and was immediately hit by the realization that it was all a dream and that Kay is gone. Need I say more?

Man, this is extremely tough. Esther told me that the sleeping meds block REM sleep and that it's quite likely that one has to go through a period of effectively catching up on a REM sleep deficiency. But if this is what I'm going to have to go through before I can return to sleeping normally, I have no idea what I'm going to do. I can't face the idea of more nights like last (Friday) night. 

Another consequence of last night is that I've been pretty tired all day. We have been out most of the day doing one thing or another and we got back around 4pm. I put my feet up on the sofa and almost immediately dozed off for an hour or so. A bad move since this almost always makes it more difficult for me to sleep at bedtime. But anyway, we went to bed at the normal time and I decided to bite the bullet and skip the sleeping tablet again - might as well get the bad nights over with as soon as possible. And since it's weekend, if I'm tired tomorrow (Sunday) it doesn't matter so much. But this time I decided to immediately take the lighter "fall asleep" tablet in addition to Marion's homeopathic solution, I had no desire to lie around waiting for sleep to come.

Well, so far this has all been a big failure. It's now 2.15am on Sunday morning and I'm sat downstairs writing this blog entry, absolutely wide awake. I guess that I've been sunk by my afternoon snooze. After taking the aforementioned tablets I lay in bed reading for a bit and then tried to sleep. But I just re-entered the sleeping/not-sleeping zone where my control over my thoughts starts to soften and they go spiralling off towards stress-generating subjects. There's a perversity about this: I need to exercise mental control to relax but as I start to relax so my mental control slips and I start to "unrelax" and so cycle backwards and forwards. But I'm also aware of the whole thing and I start to get frustrated that I can't relax and then the whole show is over - I'm awake, annoyed and far from the level of relaxation that I need to sleep.


The easiest thing would just be to knock back a tablet. But that way lies a kind of addiction. I have to and I want to get off these damned tablets. But equally I've had a sleeping problem for a long time now, for months before Kay died. So maybe it's a bit optimistic to think that I can straighten myself out quite so quickly. But then again, if not now then when should I tackle this problem? I don't really want to try to tackle it during the Christmas holidays. I'd rather like to have a rest during the Christmas period and battling with sleep problems won't help with that goal. Equally I have a lot of work to do the coming weeks and turning up at the office, brain-dead due to a lack of sleep, is not going to help that either.

But then again, again, I hate being dependent on anything, certainly anything artificial and it's going to bug me that I've got a dependency that needs sorting. And Marion's pushed through it, so why can't I? And further, if these tablets build up a REM sleep debt, the longer that I'm on them surely the more mentally painful and difficult it's going to be to unhook myself from the dependency. Also, the sleeping tablets get less effective with time, so then I'm simply building up a REM debt for less gain. Therefore my thinking is that this is a problem that needs to be dealt with sooner rather than later.

So here I am, wide awake in the middle of the night, fearing sleep, dreading failing to sleep, but equally knowing that I'm going to be a zombie tomorrow (today) if I don't sleep. 

I wonder if I can find an ancient copy of the "Val Doonican Show" on iTunes? That would probably be an instant and non-toxic way of falling asleep, though I suppose that there would be a risk of permanent brain damage if I didn't fall asleep within the first few minutes.

Friday, 26 November 2010

Dobby

This being Harry Potter season, one of the films is on TV tonight. Which reminded me of just how much Kay was scared by Dobby, so scared that she dare not watch any episode that was Dobby centric. So I suppose that she won't miss the final installments. Or maybe I'll just miss her hiding her face in my chest whenever Dobby appears.

Thursday, 25 November 2010

The limits of a blog

Blogging has its limits, as I'm finding out in capital letters this week. A bunch of things have happened that are too sensitive to air in public. But trust me, another couple of kicks have been dealt out the last days. Before anyone assumes the worst I should say that the impact of the kicks is, hopefully, largely emotional. But today I have been completely knocked sideways by some news that I had this morning, to the extent that I've been non-operational and very upset all day. Sounds a bit wimpy stated like that, but yeh, it's also accurate.

Part of my strong reaction is because it feels like another 'story' is about to start. Now, I have received assurances that this is not the case, but still, given our experiences during the last years it's difficult to give bad news the best interpretation. I thought, hoped, that Kay's death would be the very last chapter of difficulty in our lives. But I suppose that that's the definition of false hope. Or maybe not, we'll see.

To neutralise my shock and occupy my brain I've subjected myself to back-to-back episodes of "Reggin Perrin" this afternoon, both the new series. For those not in the know, this is a comedy series about a business executive going through mental meltdown/midlife crisis. It's very funny but in a way that sounds more than a note of reality. I have been simultaneously laughing and wondering about adopting some of his crazy ideas myself. Going to work in a white suit, imitating voice mail to avoid taking calls and taking nothing seriously sounds just about right to me. Ha!

Anyway, I'm extremely tired, too tired to continue writing around the edges of stuff.

Monday, 22 November 2010

Detox

Over the last weeks we have been slowly weaning ourselves off the support medication. To recap, both of us have been on anti-anxiety/depression meds since July or so, and on sleeping tablets since Kay's death (that word is oh so wrong). The anti-depression meds played hell with my system for four weeks when I started them. I had a permanent headache, dizziness and nausea. My head has not felt right for months, but of course there's no way to be certain of the cause. However I don't like taking drugs and, since I generally feel rough these days, I'm fairly anxious to eliminate any external sources of problems.

So we started the process of slowly detoxing from the antidepressants three weeks ago with a plan to be off them after five weeks, give or take. Last Monday I was down to a 50% dose but as I mentioned, I started suffering some very bad symptoms a couple of days later. Again, headaches, nausea and dizziness with the addition of very painful shoulders and neck.

We had originally also agreed with our GP that we would tackle the sleep meds later. But I had noticed that they were having progressively less effect, namely I was falling asleep later and waking up earlier. This is an indication that my system was getting used to their effect. So after chatting to our GP we both decided to try reducing the sleep meds. The plan was to stop them three nights per week in a planned way.

So last Monday night we skipped them for the first time. The result was fairly dramatic, we both had a terrible night. During the period that I have taken these tablets I have had more or less dreamless and restful sleep. But last Monday I slept very lightly and 'woke' the next morning feeling like I'd caught up on two months dreaming in a single night. And weird dreams they were indeed, at one point putting me in a canoe in Rotterdam harbour with a friend. Marion had exactly the same experience (not including the canoe), strangely enough and the result was that on Tuesday we both felt as if we had been lightly beaten with sticks the whole night.

For some reason that I've forgotten I decided to repeat the experiment on Tuesday night. However my cunning plan this time was to use a lighter sleep inducing drug that we'd still got in stock instead, the theory being that if I could get into a deep sleep then hopefully I'd stay that way. I also managed to convince Marion of the wisdom of my theory. But it turned out to be a stupid idea, we simply repeated Monday night's experience. Thus Wednesday started badly and went downhill from there. I have now resolved to continue with the sleep meds irrespective, trying to reduce both drugs at the same time is way too hard. Having said that Marion is toughing it out according to the original plan w.r.t. the sleeping meds but using homeopathic alternatives.

As I mentioned yesterday, various interventions seemed to have counteracted the diverse physical effects that beset me. Friday through till this morning I have been feeling reasonable. But this afternoon I started to feel rough again and as I sit here the shoulder pain has returned along with the nausea and I'm feeling extremely tired. The idea that I'm probably only half way through the detox process is pretty intimidating. I simply can't wait to get off this medication and return to "normality" where, according to Hitchhikers Guide to the Galaxy, "Anything you still can't cope with is [therefore] your own problem".

Sunday, 21 November 2010

Hard Week

Apologies for the lack of posts. Last week was a hard week for both of us and I just didn't have the energy to write. On Monday I had a major emotional dip. Then on Wednesday my physical symptoms took a major turn for the worse.

In the afternoon I started to feel terrible. I went to lie on the bed but I couldn't rest. My mind kept slipping to thoughts of Kay and I kept being hit by panic attacks. In the evening I started suffering from neck and shoulder pain to the extent that I was horizontal with a hot water bottle and strong painkillers. I also had a thundering headache and nausea. Coincidentally on Thursday I had standing appointments with the homeopath and, separately, the physiotherapist. The homeopath gave me yet another, but stronger, dose of the same medication that I had two weeks ago. The physio recommended acupuncture and proceeded to stick me with 10 needles.

Now, I remain completely neutral about homeopathy. I take the medications and hand them to Marion and she manages the application. I pay no attention to what I'm taking and I have no expectations. Acupuncture is something different, from previous experience I have some expectations.

The acupuncture delivered more or less immediately, the feeling of nausea decreased as did the pain in my shoulders. But neither to a huge extent. However on Friday I felt a hell of a lot better, less pain, no nausea and generally mentally stronger. The effect of the homeopathic medication? Draw your own conclusions.

Further, on Friday afternoon I had a fantastic massage from a friend, which was so good that for the first time in ages I felt some pure, uncompromised enjoyment. I had a smile on my face for the whole of Friday evening.

The combination of all these things is that yesterday I managed to spend the whole day doing jobs around the house. Between 9am and 6pm I think I didn't sit down for more than about 30mins. It was good to be busy in this way, the house is showing signs of a distinct lack of TLC. Light bulbs have now been changed, lights and pictures hung, the fireplace cleaned, etc, etc. We're working on creating a "Kay Corner", a permanent location for her beautiful photo with a table underneath with the hockey ball from her final match in which she scored five goals, and all the other important momentos of her life.

Irrespective of all this we continue to struggle emotionally. Marion has just this minute burst into tears. I asked her whether Kay got a trophy for winning her club spring tennis championship this year and this was too much for her. Yesterday it was my turn. We were visiting friends and Nattie and their son started making candles. This suddenly reminded me of the soap and perfume making sets that I got Kay for her birthday and how we spent a few hours here and there making smelly soap. This memory was just too much for me and I fell to tears, as I'm starting to do now while writing this.

It is truly terrible, how much I miss Kay. My heart aches for her. Everytime I walk into the lounge and see her photo I just want to put my arms round her and hold her close, so very close. Today I went mountain biking and it's so hard to put to one side how much Kay was looking forward to coming on her mountain bike with me.

We're now entering the difficult festive season and I'm dreading it. There will be so many tears and so much pain. I can't believe that it's possible for a year to contain so much. This is the year that Kay won the tennis, when she played inspired hockey, when she drove herself to take part in selection training, when she survived chemotherapy and terrible mistakes in her treatment, when she came through the bone marrow transplant extremely well, when she weakened, when she died. How can all this be possible in a single year? How can our lives have been ripped to pieces in such a devasting way?

I was thinking this afternoon how difficult it is to tell people just how certain Marion and I were that Kay would survive. We never really believed for a single second that Kay would not survive. The thought never really crossed our minds. This may seem strange, certainly if you read Kay's blog, but it's true. We never never NEVER expected to be here, now, in this situation, without Kay. Think about it, that after everything that happened the possibility of failure never really was a possibility to us. Then just maybe you might begin to understand one of the most difficult aspects of how we feel. Certainly this is one of the major reasons why I'm still in shock, I still can't begin to comprehend our loss.

I've rambled on for long enough right now. Long blog entries become boring.

Night night.