It’s 02.06 and I haven’t slept tonight. During the evening, in the middle of a band rehearsal, I felt a strange, contradictory sensation – great tiredness and yet a sort of buzzing alertness behind it. I mentioned this to Emma, but thought no more about it, although I was very conscious of its still being active when, at about 11.30, I got into bed. I may have dozed for a while, but woke into full consciousness at about 12.15. I tried reading, but experienced the familiar tiring of the eyes and momentary dozing that normally signals the onset of sleep. But as soon as I put the book down and my eyes focussed on the room about me, the wakefulness returned. I read and rested my eyes fitfully and then finally got up at 01.55. I came downstairs and fired up the laptop. Now, at 02.17, such is my state of alertness, it seems pretty clear that I shan’t sleep again tonight.
I have written often of insomnia. I’ve had bouts of it ever since childhood. More recently, it’s been initiated by one of the kids waking up in the night and my being unable to get back to sleep after settling them down – as was the context of the previous post. But it’s not been severe or particularly troubling for a couple of years now. Tonight there’s something qualitatively different in the state – an edge of attention, of clarity of consciousness that transcends the tiredness. My heart rate is steady; I don’t feel agitated (beyond a sense of some distress at being awake when it’s the last thing I want to be); there are no other physical symptoms in place that might account for the state or that appear to characterise it at this point.
All of which is leading me to the conclusion that it’s a reaction to my course of prednisone. Insomnia is a recognised side effect, although it’s normally identified as being accompanied by a degree of physical restlessness and disturbance, which I can’t say that I really feel. If this is the case, then I’m due a somewhat rougher ride than I’d anticipated. I’m on a low dosage – 20 mils a day – and I’ve been taking it for six days now without any reaction thus far. But although after a further week of the same dosage, it will then gradually diminish, this course lasts for three months and, on present showing, it would seem likely that the insomnia will continue.
Immediate reactions to this unanticipated state of affairs are, of course, marked by anxiety and some distress. My sarcoidosis was diagnosed 18 months ago and – apart from a few clear physical symptoms that have caused no discomfort or inconvenience and some periods of agonising over where it might all go – the condition has had no direct or consistent impact on my life. Assurances have been given that my presentation of sarcoid is mild and – in the words of my physician – of ‘the best kind’. Her general prognosis has been that the condition is unlikely to have any major impact on my life ahead. However, the standard medical wisdom is that the condition can only be successfully managed by the administering of prednisone. Her hope for this current course is that after three months the sarcoid activity will be sufficiently inhibited for me to come of the drug for a while. Being chronic, the condition will re-establish itself, but the plan would be for an alternation of relatively low-level prednisone treatments and prednisone-free periods.
All of which offers a degree of comfort. I could contemplate that regime with some sense of having got off lightly and – within the minor inconveniences caused – life could go on much as normal. But if it’s now apparent that I’m going to begin to experience at least one of the negative side effects of this powerful corticosteroid drug then the picture changes significantly. It would mean that on current dosage then the likelihood of insomnia would attend each course of treatment. On higher and/or longer dosages, there would be the possibility of further side effects – salt and fluid retention, weight gain, high blood pressure, dizziness and (the immune system having been repressed) higher susceptibility to infection. All of these reactions are commonly reported by sarcoid sufferers taking prednisone and not for nothing is treatment frequently identified as being harder to deal with than the condition for which it’s being applied.
I’m presenting a negative assessment here, a worst-case scenario. But if this insomnia is the product of a low dosage of prednisone then – my vulnerability to prednisone being made apparent by it - my fears are not entirely without foundation. And having experienced absolutely no side effects with my higher, albeit shorter course last year, I had confidently expected a similar experience this time around. The nature of my current wakefulness is different in character to my standard insomnia. Where with the constitutional kind, I would by now, at 03.21, be flagging, I am fully awake and alert. Time will tell, but I fear that my experience of prednisone is going to be different this time.
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I shan’t post about my sarcoidosis or its treatment at this length again. I do so reluctantly now. The content and general focus of this blog have been long established and, whilst I include personal detail frequently, it is not of the confessional or self-expository kind. Friends have been thoughtful and concerned when I have dealt with this subject previously and that has always been welcome and gratifying. But I have no intention of stepping out from behind the combination of materials that have been the substance of the Patteran Pages during the past six years in order to record faithfully the progress of my indisposition. There are many blogs out there that go towards the fulfilling of such needs in individuals and they have faithful followings from those whose needs are correspondingly satisfied and that is exactly as it should be in this strange shared world of ours. But for better or worse, I’m not one such and nor, I believe, are you.
So as before when I was uncertain as to how events might pan out, I shall step back for a while to watch and wait. I may well come tumbling back in within days. Indeed, if the nights are going to be long then I suppose I might, at last, have those protracted stretches of time within which to write at length and leisure. But I think that there may be a bit of a struggle coming up and if so then there’ll be some adjusting to do. Best to do it behind the scenes and then take stock after a little time has passed.
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