Summer solstice?

I said I’d not be writing more. I also said I had enjoyed a migraine-free period. I further remarked of my fear of retribution should I dare to write about that fact. The day before yesterday – migraine. It has taken me until this morning to work out the possible correlation with the post-summer solstice timing and to wonder about it…

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A long gap

It has been a long time since I last posted here, and I have spent some time trying understand the significance of this. As usual with most things, there is probably no single reason.

We have been busy with the chore of finding a house and going through the usual agonies of choice, decision and the final nail-biting time as the deal is progressively closed. We are now on track with the legal agencies fully involved, albeit with their usual apparent lack of the same sense of urgency as us.

I have not experienced a migraine for weeks. I shrink from writing this fact down, as I am superstitious enough to  fear that the very act may provoke one: I really am! Why no migraine, then? There has certainly been enough stress; the only correlation I can make is with my venture into taking 400 Mg of Vitamin B2 each day. The stated evidence for this as migraine prophylactic is not very strong, but I was willing to try it in desperation. Of course, there are plenty of other mitigating circumstances – we’ve found a house, I am beginning to feel very settled here in Wells, recent weather has been blissful and my CPAP mask seems to have fixed my fatigue problem. Set against that must be the stress of house-hunting. We shall never know, and migraine almost certainly cannot be cured in any sense, so the question of whether one has them at bay is only partially decidable – one is in remission until the next one strikes. So each day without is victory, and to be savoured.

The CPAP treatment is now part of my everyday routine. People wonder how one can sleep with a plastic box strapped to one’s face – and of course, I sleep better with it than I ever did without. It has begun to feel like a comforting friend, and I take good care of my mask and respirator. I must be about three times more energetic than I was. Moreover, I can enjoy busy days and carry on as normal afterwards, whereas pre-CPAP I would have been laid flat, exhausted, for a day or more. I am so grateful to the GP who finally agreed to send me for a sleep study, and to Sam and Glenys at the Sleep Unit of the Great Western Hospital, Swindon, for diagnosing my condition and equipping me so thoroughly and with such good care.

I mentioned settling in and the weather earlier. I have felt so well of late that it makes me wonder whether (how?) depressed I may have become over the past few years. I truly feel like a different person. As icing on the cake, the problem with my arm which was diagnosed (finally) as a trapped nerve in my arm has gone away, partly through exercises and partly through learning some Alexander Technique, for which thanks are due to Chris, the NHS Phsyiotherapist at West Mendip, Fiona Clogstoun (see for a little more) and Dr. Will Harris at Wells Health Centre. The residual pins and needles problem is, I am convinced now, a sign that we need a new mattress. Interestingly, trying to accommodate sleeping with a CPAP mask and consequent fiddling with pillows, was the cause of this last discovery for me.

I realise that this post has begun to sound like ‘thank you and farewell’, and it probably always was going to turn out so: but until my fingers meet the keys I can never be quite sure what is going to follow. I began this blog as an online fatigue diary, aimed at isolating the essential problems which I had thought were much more stroke-related than it turns out they were. I suspect that the extra fatigue residue from a mild stroke pushed me over some kind of fatigue edge, but that the basic problem of Obstructive Sleep Apnoea has been there for a very long time, even all my life. So perhaps the time has indeed come to close the diary for now, as the original objective has been met. My closing thanks must go to Claire White for suggesting a diary, Frances for her loving and patient support through a challenging few years and, not least, to you, gentle reader, for being my sympathetic ears and thoughtful correspondents.

Ben Potter

Wells, 25/06/14.

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Learning …

I suspect I am still learning a few things. Well, I suppose life is about learning – in my view, if it isn’t then one is probably heading for trouble! I am certainly still learning the tricks of CPAP mask management in order to get a good night’s sleep. After all, it isn’t much use if the mask reduces loss of good sleep due to apnoea if it just keeps you awake by leaking, is it now?

I have changed pillows and also bought a cheap ‘Total’ doughnut pillow, which neatly allows the mask to sit over the side. It has the other merit of costing less than one fifth of the ‘special’ CPAP pillows, which I very much appreciate. I have also taken to wearing a blindfold mask,airline issue. The overall effect is most odd, Frances tells me, and it certainly makes a trip to the loo something of a challenge, along with taking a drink of water. What it does prevent your eyes from being dried out should any slight leak occur around the top of the mask. Hand-in-hand with all this goes the problem that once one gets the mask nicely set up and in place, one is reluctant to remove it in order to deal with liquids at either end of the alimentary sub-system. I tried a straw – yes, for drinking, of course! – but have yet to find a good way of getting it in my mouth without taking the mask off anyway. Research in the field, like most interesting research, continues….

I guess the other learning process involves distinguishing ‘mere’ tiredness from fatigue. I am, after all, 66 and only reasonably fit – certainly not wildly so. Hence I grow tired after a busy day, and sometimes take a nap. But I can now do things which would simply have laid me out for a day or more, which is miraculous. I have also gained an enjoyment of life which I had lost. I am also beginning to perceive, I think, that the very business of striving to act in a manner which I thought right and proper has been a cost in itself, in terms of stress and energy required. So the fatigue conspired to make itself worse – a nasty piece of positive (i.e. self-reinforcing) feedback.

Of course, there has always been an alternative – that of simply giving in, which I have had to do on many an occasion. Beyond that, I suppose I could have given up, as I suspect some people do when faced with extreme fatigue. I certainly contemplated it, I am reluctantly forced to concede. But I console myself with the thought that I am actually not smart enough to know when to give up, and certainly too much of a coward to actually do it.

So the journey of discovery continues.

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Strange siting

Strange siting

“Waiter, there’s a frog on the line!”

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… the picture is the head–band from my CPAP mask. Once a week is washing day, when the wearable bits and the hose need to be rinsed in warm soapy water. Today is the day.

This means I have now lived with my CPAP machine and mask for a week. I understand that many people have some trouble adapting to sleeping with a mask covering their mouth and nose and a machine humming and hawing away nearby. Partners may find this strange, too – the trade-off is against snoring!

The advice to new users is to build up the usage periods slowly, building towards a follow-up session a month after first fitting. I was too stubborn for this – I tried the kit for a 30 minute nap on Tuesday and then launched into catching up on a life-time of bad sleep. The improvement on Day 1 was tangible. My sister remarked on it when I visited, and my brain had lost a kind of wire-wool fog through which all events were perceived and all decisions and actions fought through.

Oh, I can still tire myself, for sure; but the gasping desperate need to sleep, sometimes even when shopping or in some other wholly impossible situation seems to have gone entirely. Being tired is normal, isn’t it? Suffering continual fatigue is something else.

There is still a learning curve to be gone up. Adjustment of the mask, and even finding the right one, seems to be something of an art. It is all too easy at present to ‘spring a leak’, whereby air escapes around the silicone rubber cushion provided. In the worst case, this causes whistling and a dig in the ribs sometimes follows, in the nicest imaginable way. The machine is adaptive – it starts with a low pressure setting and works upwards as required to overcome any blocking off of the airway. This seems to result, in my case, of a fairly full-on leak if I lie on my back so I try to keep to my side, where the challenge is more about pillow management.

So far, so marvellous! My quibbles are small and all about learning to live with the mask. It awaits a nick-name. Darth is the obvious one; that of a friend is called Hannibal. I await inspiration, as usual.

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Well, I have been counting days. Tomorrow, Tuesday, is the date of my appointment for fitting of a CPAP mask. That will allow the process to commence whereby I discover how much of my fatigue is due to stroke and how much due to the effects of obstructive sleep apnoea.

My stroke was very mild, and I made a full recovery from the physical results. This leads me to think – no, in truth, to hope – that the fatigue is all due to other causes. On the other hand, why did it seem so clear to us both that I was much more tired after the stroke? Was it psychosomatic? Frances tells me that I have been tired as long as we have known each other, so why does the stroke get the blame?

Maybe the stroke has left some residual brain damage which is affected, or manifests itself, only when I am suffering from fatigue? I am in completely uncharted waters here as I have no clear idea precisely what is meant by terms like ‘fatigue’, or how it might be defined or measured. Early on I complained of tiredness post-stroke and was given a pulse oximeter to wear and told to walk up and down the stairs for a while. Before-and-after readings were compared and I was pronounced not to be suffering from a lack of oxygen. Case dismissed. How does blood sugar level fit into the picture? I’ve always tried to avoid that sagging feeling, mainly because it puts me at higher risk of migraine, or so I have been told, and have also observed.

I don’t know how long it will take for the effects of CPAP to become apparent. It would seem to me that getting used to wearing a mask when sleeping might need a little time, and that the early disturbed nights might limit the benefit to some extent. Hmm.. On the other hand, I often wear a blindfold, and have used ear-plugs at need. Once asleep, they don’t wake me up, so why should a CPAP mask? Hmm. More questions, but time will tell.

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No news is indeed good news

Since quitting Amitriptyline for ever I have been lucky enough to avoid migraines. I cannot really account for this, unless 400Mg of Vitamin B2 each day is working rather better than I suspected it might. There has probably been enough stress for one, as are still house-hunting. Moreover, I have joined the Wells Cathedral Voluntary Choir, which involved an audition. Under a bad star, this would probably have been enough to land me in bed for two days with a migraine! So far, so good.

On the apnoea front I am counting the days to having a mask to try. I am well aware that wishing one’s time away in hope is a silly way to carry on; nevertheless, I am. I am also conscious of the curious hinterland one encounters when diagnosed with a condition – it is very easy to feel that my daily fatigue has now been legitimised – as reason, as excuse. I wrestle with this, as I suppose I have been wrestling with tiredness for some time now. I refuse to curl up and do nothing but sleep, yet know that a normal person’s daily activity is, effectively, beyond me: certainly for any sustained period. I am also mindful of Seneca’s promptings that one has no reason to have to feel like doing anything in order to do it, so sometimes I flog on regardless. I am aware sometimes that detailed or risky work is beyond me, having broken things or hurt myself in the past when trying.

The first anniversary of these scribblings looms, I think. I started this at Claire’s suggestion as a way of exploring post-stroke fatigue in hopes of better understanding the causes. The journey has encompassed various complaints and illuminating moments regarding migraine and other tales of woe. It has helped me. One or two kind folk have noted that they have had some use or encouragement, but sometimes it feels like a cross between Facebook narcissism and a retired man moaning about his luck from an online park bench! Either way, thank you for reading and sharing my news.

Now, where was I – ah, yes, now only 14 sleeps from CPAP day!  Well, 13-and-a-half, as it is now 02:21 – pain from trapped nerve drive me out of bed in search of painkillers and relief. Moan, moan, moan…

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