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Sleep has consistently been one of the hardest symptoms for me, not just because it is difficult, but because so much else depends on it. When sleep goes wrong, everything else seems to follow. That has been true for six years now, although since I no longer drive or travel, at least the risk to others is thankfully reduced.
On some level, sleep problems can seem amusing. Recently I bought a well‑rated, sleep‑focused earbud designed specifically to let you sleep on your side. It fits snugly enough to stay put, while playing either sound‑masking noise or music. (Yes, it is another addition to the ever‑growing product catalogue of Ben’s devices, now supplemented by a new brand of low‑calorie vanilla ice cream. It has not cured my ice‑cream obsession, but it has at least negotiated it down to something manageable. Credit to the friend who supplied the tip.)
Last night I became convinced it was raining heavily outside, which struck me as particularly odd given there was no forecast for rain whatsoever. I lay there puzzling over this for far longer than I’d like to admit, genuinely baffled, before finally realising the earbuds were playing rain sounds. Why it took me so long to work that out is, as I said, a different matter entirely. Whether they are actually improving my sleep is still very much to be seen.
On a more serious note, I am again sleep‑talking quite a lot and remain prone to hallucination‑like experiences, particularly around sleep and waking. This used to be worse, but I still vividly remember calling someone during a daytime sleep after announcing, apparently with complete authority, “Hey Siri, please call xxxx.” The call went through to a work colleague who was considerably more shocked than I was. Thankfully, that particular talent seems to have gone dormant, although I wouldn’t rule it out entirely. Retirement, at least, has reduced the potential damage.
Snoring is another matter altogether. I have traditionally denied it when my wife has claimed it, despite some fairly persuasive audio evidence. Yesterday, however, my full‑time carer corroborated the story, catching me mid‑performance during an afternoon nap in my chair. When both your wife and your carer are telling the same story, and the carer is laughing while doing an impression, denial is a waste of time.
I also have a sensitivity to light, sometimes keeping lights off and wearing sunglasses indoors, which I appreciate looks eccentric at best. More recently, I’ve developed an acute sensitivity to noise as well. The slightest pin‑drop reverberates around my head like a small event. Noise and large gatherings are a particular trigger for me, and accordingly I’ve acquired yet another item in the toy department, reusable earplugs. I remain unsure why I chose the bright yellow plastic option.
Over the past couple of months, my total sleep has increased significantly. My regime hasn’t changed, but something else has. I believe I am both calmer and more exhausted, reflected in increasing power‑down and apraxia episodes, along with more frequent daytime naps. Paradoxically, this is good news. The goal is no longer “good sleep”. It is enough recovery to function at all.
The naps may be partly assisted by my new favourite television channel, Eurosport, mainly when there isn’t a tennis tournament, offering a steady diet of snooker and cycling. I commend both unreservedly to anyone with a sleep problem. It is a small but genuine feature of retirement. More significantly, I’ve had to change my exercise routine. I now exercise with my carer, because doing it alone is simply too dangerous, and I can’t get down onto the mat and back up independently. Moving the session from 3 or 4 in the morning to 7:30am has, unsurprisingly, encouraged me to stay in bed longer. Progress, of a kind.
There are other small markers. I often wake with my eyes caked in crust, sometimes more, sometimes less, which appears to reflect how much tearing my eyes are doing overnight. The glamour of this life is really something.
All of this detail matters because sleep is not a side issue. In my experience, sleep, possibly alongside stress reduction, is the single biggest determinant of how well I manage daily life with PSP. With no medication available to control either, these are the variables I can still influence. And they are deeply interconnected. When one fails, the other follows, reliably and quickly.
Yesterday made the point as clearly as anything could. It was a very good day, for reasons I won’t go into, but I had one important objective towards the end of the day and I was laser‑focused on it. After going to the supermarket with my carer in the morning, I felt thoroughly drained and made the deliberate decision to sleep and rest as much as possible for the remainder of the day. That meant declining visits from close friends, despite their kindness, because I needed to recharge. In one sense this was positive: I am learning to listen to my body and act on what it tells me. In another, it underlined just how limited my range has become. Managing sleep, increasingly, means managing everything else around it.
Sleep and naps are fundamental. But they are no longer just about rest. They are about containment: containing symptoms, containing exhaustion, and containing the ripple effect on the people closest to me. Above all, it is essential that my loved ones, and especially my wife, don’t suffer unnecessarily as a result of my sleep issues.
That, I’m afraid, remains very much a work in progress.
