I’m attempting to try and tidy up again. In some senses I’m a bit of a dichotomy in that I’ve never been a neat person, but I can’t stand dirt. To me though they’re not the same thing at all. I detest a dirty plate, but I can happily (or at least, dispassionately) tune out a stack of clean laundry which is cluttering up a perfectly good chair. I’m almost certainly the untidiest person I know.

It doesn’t help that I seem to have hoarder genes – keeping pieces of wire, empty boxes, jars and so on “in case they come in handy”. Very occasionally they do (which reinforces the behaviour and vindicates my storing them in the first place!) but mostly they just take up a lot of space.

While walking through my dining-room (a room which many of my friends would be surprised is actually intended to be a dining-room, or at least somewhere with flat surfaces and chairs in it) I had one of those overwhelming feelings of “I need to DO something about this” but I don’t really know where to start.

I need to hoover and mop the floor.
I need to get rid of empty boxes.
I need to move the clean clothes from their “temporary” resting place on the couch.

The problem is that I can’t fix most of these things right now, because my N24 is at a part of the cycle where I’m awake in the middle of the night and I can’t be banging about moving couches, hoovering up and clattering about in wardrobes or I’ll wake the neighbours.

When I eventually roll back around to daytimes, there’s a million daytime-things that need to be done like shopping, hoovering, calling utility companies or whatever – they say we live in a 24-hour world, but that’s not really true. For instance, tonight is a Sunday – the 24-hour supermarket is closed because of Sunday Trading laws.
In any case, night-time shopping at the 24-hour supermarket isn’t even an option during the rest of the week because, although it’s within walking distance, I can’t carry all the shopping back. Nobody else is awake to help me carry it, or to give me a lift. Buses don’t run at this time of night and I can’t afford a car or the insurace for one, nor can I afford taxis, so shopping must wait until the daytime when nearby shops are open.

Online shopping isn’t even an option – you have to book a delivery window and my sleep pattern isn’t predictable enough that I can say I’ll have woken up in time (or been able to stay awake long enough) to be available to take the delivery.

The whole thing frustrates me so much. I hate that the N24 affects my life to such an extent – even when I go out of my way to avoid thinking about it, it manages to creep in somewhere, even if it’s not in the form of screwing my life up at that particular moment. As an example, I was listening to a podcast the other night  when they suddenly sidetracked into a discussion on sleep disorders. It seems silly but it just completely jolted me from being relaxed to a sort of sinking feeling, like the universe won’t allow me to forget about the illness. That’s silly I know – it’s just there in the back of my mind and because it’s relevant it jumps out at me, whether I want it to or not.

I’m hoping to attend a support group tomorrow for sufferers of neuroligcal disorders. I say “tomorow” – it’s what would be “tomorrow” for a normal person; for me, it will be the equivalent of about 9pm. I’ll have to play it by ear as I might be too tired to make the hour-long journey there, attend, and then the hour-long journey back. It’ll also depend on how my stomach is – I might not be able to sit on a bus for that long without urgently needing the loo.

I would like to go to the group. I first found out about it over a year ago, but several factors have put the stoppers on me actually going. They only meet on the first Monday of each month, and between the N24 and it’s knock-on symptoms (e.g. the stomach problems), plus the situation of never having much money, I simply haven’t been able to go. That might not make any sense the way I’ve written it – I’ll try and rephrase it.
Bear in mind that my sleep cycle drifts daily, and in addition, that it’s rather unpredictable.
In order to attend the group, I need to be awake at the correct time on a very particular day. This has to be a day when I’m not only awake, but well enough to travel. I also need to have enough money to get there. When you combine these, you find that there are very, very few times where everything lines up just right.

I don’t know if I’d fit in there anyway. From what I’ve been told, most of the attendees have things like Epilepsy, Multiple Sclerosis, Parkinsons, etc.
I’m kind of scared that if I go, I’ll be too “healthy looking”. N24 doesn’t really have obvious visible symptoms unless you know what to look for – that’s one of the reasons it took decades for me to be diagnosed and why it’s also referred to as an “invisible disability”.
I’m also sort of dreading having to explain N24 – since I was diagnosed, I’ve had to try and explain it to virtually everybody I know, not to mention to people I’ve just been introduced to, and while some people get the general idea, nobody really understands it.

It gets kind of tiring attempting to describe it in a way that people can ‘get’, all the while knowing that in their head they’re thinking “I wonder if he’s tried Nytol/warm milk”, etc. and in many cases being given “helpful” advice about how to sleep “better”. The closest analogy I can think of is that it would be like somebody telling a person whose legs are paralysed that if they practise yoga then that’ll certainly help them to walk again. It doesn’t work like that. It’s a neural wiring problem – a disability.

That’s another thing, that word “disability” – I’m still getting my head around the fact that N24 is a bona fide disability. It’s massively affected my life in a multitude of very negative ways, not only for the big things like education and working, but on smaller scales too like not being able to do the housework. I know it sounds trite but there it is.

The frustration stems, I think, from not knowing what to do about any of it. After I was diagnosed, the neurologists tried the few treatments available, but after these treatments failed to have any effect the doctors and neuroscientists essentially shrugged their shoulders and told me I was on my own. Nobody knows what to do. Why aren’t they doing more research? I don’t want to be like this for the rest of my life.

At present however, there is nothing I can do about it so I just have to deal with it. You’d think there would be some sort of counselling available, you know, “How to adjust to the fact that you have a rare, untreatable, incurable illness which has wrecked your life” but none has been offered. Maybe I’ll ask my GP next time I manage to see him.

On the plus side, I have been able to find internet support groups for sufferers of the condition and related circadian disorders, and these have been a godsend. It’s wonderful to be able to actually relate to people – people who have been through the same things I have, who understand the way this horrible neurological disorder gets into the deepest nooks and crannies of what used to be your life.

At times it’s also a little disheartening too, because you always hope that someone is going to hit on a method of controlling the N24 that works. Sometimes they find something that works for them, but often it only works for a few months, and in any case there’s never a silver bullet. You also see people posting who have either only just developed the disorder, or only just found out that it exists, and you know what a struggle they have ahead of them, particularly because not everybody is fortunate enough to have a family who supports them like I have.

I do try not to get down my situation, I really do. It doesn’t always sound like it, I know, but I’m actually in a relatively good mood tonight. While I haven’t been able to do the tidying I wanted to do, I have been able to do some quiet things like defrost the freezer.

Also, for the last year or so I’ve been making a Herculean effort to THROW UNNEEDED THINGS OUT straight away – even if they might be somehow useful at some unknown time in the future.

The other type of clutter I’ve been collecting for years is Sentimental Things – none of these things have monetary value, but they either belonged to somebody close to me or remind me of some person, time or place.  These types of items can range from (at the more understandable end of the spectrum) things like a Christmas card from a deceased relative or friend, to (at the craaaaaaaaazy! end of things) 20-year-old bus tickets from a time when I went to a concert or something. I’ve been making a point of eliminating the less sane items – in particular things like those bus tickets, on which I never even wrote what event I was going to, nor who with, and are now, due to the printed ink fading with age, simply thin, blank pieces of paper.

This has meant that the rate of cluttering has decreased enormously, though there is still a lot to do.

The freezer is well on its way to being defrosted now. Due to a crack, the top couple of drawers have been completely iced up for a very long time and have likely got food in them which has been frozen for years. I hate to waste anything, especially food – I went to a Catholic school where not liking things like Manchester Tart or semolina would result in admonishments like “Well, think of All The Starving Children in Africa! They don’t have ANY food, and here’s you not wanting yours.” which has resulted in a guilt-complex I’ve never quite been able to shake – however this stuff in the freezer has likely long had its cellular structure damaged beyond edibility by gigantic ice-crystals, so it’ll have to go.

The binmen arrive very early tomorrow (well, today, that is – in a few hours), but this means that I’m going to have to creep about outside in the early hours to put the binbags in the bin without making any noise and waking the neighbours – if I don’t get the bags in before the binmen come, I’ll have to wait two weeks for the next collection which means I’ll have to continue to store the food in the freezer, lest it rot.
This is bad planning on my part more than anything – I couldn’t defrost the freezer earlier in the week for the same reason of not wanting rotting food hanging about, but I could have done it yesterday, and should have.

These blog posts always end up being longer than I intend. I suppose it’s because I don’t really have any idea in mind when I start writing, but just allow one topic to flow to another. I think I quite like it that way, rather than having some self-enforced rigidity. If I sat down and thought “In this post, I may only write about my cactus!” I doubt much would get written at all.

I think too that I’m finding it somewhat therapeutic to write. It’s sort of nice not knowing what I’ll write about, nor who will read it (if anybody). It’s not being written for anyone else, just as an outlet. It’s public so that if anybody else wants to, they can read it.

I seem to be having a “cloudy headed day”. These are days (or nights) when I don’t seem to be firing on all cylinders. It’s related to my sleep cycle, but I haven’t really been able to pin it down. This is one of those things I’d very much like some help with from the doctors – if I could identify the reason it happens, I might be able to mitigate it. I suppose the same goes for the whole of the N24 though. If I knew what made that happen, maybe there’d be a way to undo it?

When I’m “cloudy” like this, I don’t seem to have as good a grasp of how long things take, tend to do badly with things like crosswords and can be clumsy. It’ll clear up in a few hours most likely. From what I can tell, it seems to be because while my sleep-wake cycle is mistimed, other intrinsic circadian rhythms are also mistimed but to different extents. That’s one of the reasons my stomach can sometimes be so bad, because the digestion system thinks it’s one time of day (or night), while my “Is it the right time to be awake?” system thinks it’s another, and neither of them conform to the actual time. I get it with body temperature too. Sometimes I’ll have an hour or so where I feel like I’m burning up or shivering, even though the ambient temperature is perfectly fine. Just one of those things.

2 thoughts on “Tidying”

  1. Yeah, I “only” have DSPD, but so much of what you tell is soooo familiar. Trying to wake up “on time” for whatever and not hearing 5 alarm clocks + a clock radio on a station I hate + 3 spotlights on a timer, aimed at my pillow. Carrying on apparently reasonable conversations and not remembering a word. A fire in the apartment upstairs: emergency vehicles, people in heavy boots running in the stairs next to my bedroom — and all the neighbors refusing to believe I could have slept through all THAT. A series of doctors (and psychologists!) who knew less than nothing about circadian rhythms and the possible disorders thereof. I, too, after sleeping off my sleep debt, have not settled into any predictable schedule. So you’re not alone. And I agree that our mail list + online fora are life-savers, as no one but us can really understand us.

    And then you have financial difficulties in addition. That must be a whole ‘nother can of worms. I’m so sorry.

    1. Thanks 🙂

      Yeah it’s amazing how you sort of get used to those things being normal, you sort of forget that to other (“normal”) people they can seem unbelievable.

      As for “only” DSPD, I don’t think there’s really any “only” about it, it can be just as destructive. I suppose in some ways it’s not as bad, since you might still have a vague idea of when you’ll be about so can make appointments and plans and things, but I’d be willing to bet it’s worse in other ways – e.g. if you’re DSPD and stuck on nights. At least with N24 I get to see some daylight (even if it is just grey cloud 🙂 )

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