It’s closing in on 4am and I find myself sat in the lounge at my parents’ house if not quite wide awake then certainly not sound asleep.  Since I finally gave in to my night’s chronic lack of slumber just over an hour ago, I’ve been wondering to myself whether this point marks a new low in my struggle as it has been.

It’s extraordinarily tempting to call it that, but putting tiredness and busy-headedness to one side, if I try to clear up the picture a little bit I suppose it’s hard to suggest right now that I’m worse off than I was when I was admitted to Oxford back in June.

Certainly, chest-wise, I’m not doing as badly as I was then.  Yes, I’m still finding every day a struggle and breathlessness is increasingly a problem throughout the day, rather than being something which tended to isolate itself to certain times or periods which could be identified and focused on.  And yes, every night is seemingly harder than more recent times to gather myself and settle down to sleep – the effort of undressing, of washing both myself and my equipment, of simply sitting in bed reading is considerably more noticeable than it was a week or more ago.

On the other hand, I’m not spiking the temperatures I was spiking in June, nor am I confined as I was then to my bed, fighting for breath even at rest and needing the highest flows of oxygen I could muster with my various concentrators to see me to the bathroom and back.  I am, on the whole, physically better off than I was back in June, although it is tempting to be blinded to it by the storm of exhaustion that has settled in to my quiet little dwelling.

I can only surmise, then, that if I am physically better off than I was in June then in order to be feeling quite as badly as I do about things at the moment, then my head is very far from in the right place.  There is a line of which people often speak between living and existing – an invisible, intangible and yet undeniable line over which the simple matter of getting through the day becomes the be-all and end-all of one’s ambitions.  I am not entirely sure I have reached such a line yet, but for the first time in a long while it has become more to me than a mark on a road map which I may be approaching.  Rather, it is now a hazy, not-so-distant shimmer which presents itself as being not as far away as one would like or hope it to be.

At the end of last week, K and I made the executive decision to take ourselves back to Chez Parental in order to afford K more time to study for her college finals in a 2 weeks’ time and prepare for her uni interview without having to look after me and without me having to worry about whether she was spending too much time on me and not enough on herself (something at which I am incredibly bad at – I spend most of my life worrying that she’s worrying too much, which is a vicious circle in itself).

My mood, however, has not taken to the holiday particularly well.  I have no idea if it is purely coincidental, or if coming home carries an air of admitting defeat or some other such nonsense, but since settling back in here I have been distinctly more negatively-focused and have noticed the difficulties over-and-above the advantages.

Interestingly, I don’t think it’s particularly anything about being home, but more a reflection of the general difficulties I’m struggling with physically at the moment.  The biggest problem I’m facing is one of discomfort – I find it almost impossible now to be comfortable in any position at all.

Lying down is fine enough, but only if I am truly horizontal, which makes doing anything at all nigh-on impossible.  From there, there is lying propped up, which stresses my lower back and neck, there is sitting up, as on a sofa, which stresses my neck to the point of causing headaches and my upper back and shoulders causing breathlessness.  Sitting bolt-upright in a well-supported armchair is about right, but if the back of the chair is not vertical – like the study chair at home – my neck once again takes the strain if it is not supported or rested back.

When sleeping is a problem, it can at least be countered with good periods of solid rest during the day.  But when solid rest is completely unachievable – when it is impossible simply to crash out on the sofa and watch mind-numbing TV or brain-absorbing DVDs – lack of sleep becomes just as debilitating as a lack of breath.

When all of these factors are totted up and combined with headaches, odd, unidentifiable but frequently worrying chest pains, cramps and stomach aches on top of it, life becomes a roller-coaster of moment-to-moment misery through which you ache to enjoy that odd glimpse of sunlight glinting through the clouds.

That’s not to say I haven’t enjoyed glimpses of golden rays in the last week, nor that the world is entirely shrouded in blackness, but compared to the fights and struggles I’ve had before, this one certainly feels like it’s ramping things up a notch.

I’m not entirely sure what the point of all the above is/will prove to be, other than a manner of half-an-hour’s distraction in the early hours of the morning and an outlet for all the mixed up frustrations which are mixing themselves up in the pressure-cooking wash-bowl of my head.  The dregs of an active, lively mind are swilling around up there somewhere, drained of colour and vibrancy by the hour of night and relentless, restless energy. 

If nothing else, I suspect this will go to show in the weeks to come the extent of any improvement on my part.  I can only hope that it marks the nadir of my fortunes and that things are all-the-way upwards from here.  If not, this is going to be a pretty hard place to visit.

Some other posts you might like:

    Nope, we got nada!