Smile Through It II: The Next Chapter

Chasing dreams, because I can

  • November 2007
    S M T W T F S
    « Oct   Dec »
  • Archives

  • Recent Tweets

    Error: Twitter did not respond. Please wait a few minutes and refresh this page.

  • Advertisements
  • Catagories

Lost: please find

Posted by Oli on Monday 19th November, 2007

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.


11 Responses to “Lost: please find”

  1. Nick and Mel said

    Hi Oli
    Not much to say really other than we are thinking of you and we are looking forward to spending the upward days with you
    All the best and all of our love
    Nick and Mel x

  2. Emily said

    I think I’ve told you this story before…I tried to make myself a cup of tea one morning and struggled so much at this near-impossible task that I sank down onto the floor and cried. Which was amusingly unhelpful as crying is possibly the worst thing one can do when breathless, coupled by then attempting to get up off the floor….

    Anyway, you feel it so hard mentally because you are such a live spirit (I was going to put “liver” but somehow that really doesn’t work.)

    The fighting spirit that causes this frustration at being less independant than you would like is what is going to get you through a rather large operation.

    I only wish you didn’t have to feel this way in the interim. Hug x

  3. Frizzymum said

    The night is always darkest just before the dawn…I hope this applies literally to your post this morning, and more metaphorically – with your call due any moment.

    Much love and hugs to you, K and your ‘rents in the meantime,

    Aunty Frizz xx

  4. Jacqui said

    You’ll be in my thoughts. Wishing you all luck for the time ahead. X

  5. Alice & Joe said

    Thinking of you, watching the clock and thinking of you. Love to K and your family xxx

  6. Emily said

    For those who haven’t heard yet, Oli was called for transplant last night. He went into theatre about midnight and has just come out (8am). I know his family will be updating this blog whenever they can but I suspect it will be at the back of their things to do list, quite rightly! So just wanted to let people know why things are quiet if they are….Oli is busy joining the New Lungs Club! x

  7. Katie said

    I have just heard the news and am sitting at my desk just so so happy and so excited for you Oli. You and your family will be in my thoughts so much over the next few days. Keep fighting.

  8. Jayne said

    Thinking of you Oli.


  9. Liz Upton said

    Just heard the news – loads of love to you, K and the family. I’m so excited I’m shaking!

  10. The Wee Dot said

    Just heard the news, so pleased for you.

    Keep fighting my thoughts are with you and your family

  11. […] – it’s been a true rollercoaster covering everything from life on the list to this post, at my lowest point when I honestly didn’t think I’d see Christmas 2007, through the […]

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: