Archives: difficulties

You would have thought after all these years, including two-and-a-half on the waiting list for my transplant, that I was used to the little bumps in the road that we all come across.

Turns out I’m not.

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So, it turns out I’m not really very good at this adapting lark.

On an evolutionary scale, I’d be stuck somewhere around the fish-with-lungs kind of level – broaching the edges of a vast transformation but not quite grasping the basics of the new world laying itself out before me.

Everything is tiring.  Not just averagely sleep-making, I mean tiring.  Moving from one room to another if I have to slip off my O2 to change supply (because, let’s face it, I’m not about to raise the subject of O2 lines with Allied any time soon, even if it was an idea that appealed to me, which it doesn’t) can lead to a required recovery period of several minutes if not longer and the merest hint of further activity leaves me body screaming for bed.

The biggest problem I have is learning to listen to what my body’s telling me and then making the appropriate decision and acting upon it.

For instance: this evening I am beside myself with tiredness.  I didn’t sleep incredibly well, waking fairly often through the night in discomfort and from odd dreams.  Today, my wonderful Godson came to visit and we had a great day playing games and watching movies and just generally hanging out.  But it’s left me completely shattered.

The most sensible course of action would seem to be to take myself off to bed and sleep, but he left at 6pm, which means that if I’d slept for an hour or more at that point, which I desperately wanted to, I know that come 11pm tonight when I’ve finished my evening IVs, I’d have been unable to get myself off to sleep.

So I tried just taking myself to bed and relaxing with a book, which worked for a while before tiredness crept in and made the book a blur, on top of which the urge to spend a little more time with my soon-departing bro crept in.

I came downstairs and settled in the kitchen (comfortable but not sleep-able) to read some of the Sunday paper and we had some left-over scraps from lunch for our supper with Mum and Dad before he left.

But I’m still no better off in the tiredness stakes, and I don’t really know what to do about it.  I know that, listening to my body, I should be in bed right now, but I have a dose of drugs to do in an hour’s time, which will take an hour to go through, and if I fall asleep before then and have to wake up for them, that’ll be my night totally ruined.

I suppose one could argue that if I have nothing to do during the days, perhaps it doesn’t really matter what time I sleep, so long as I’m getting enough rest in during the day.  I could, for example, live like a badger and stay up all night watching the Ashes and take myself to bed when the day dawns, but I’m not sure that’s the answer.*

For one thing, being up all night on my own I know I wouldn’t feed myself properly then I’d miss all my day-time meals and so end up losing weight, which I really cannot afford to do.

Further to which, if I needed anything, had a nasty turn or my oxygen went funny or anything like that, it would mean rousing the house to come and help me, which I’d be mortified to do – it’s bad enough having to get someone else to make me cups of tea when I want them, or shifting oxygen tanks around on my whims, let alone getting them out of bed when they’re supposed to be resting.

What I really need to do, I think, is to find something which will keep me happily occupied in bed for a large chunk of the day – a computer game, or internet-linked lap-top or the like.  The problem with all of those options being that I don’t know how long I’m here for and they’re ridiculously extravagent things to entertain me when there’s a perfectly good TV downstairs.

I just can’t get used to spending a day on a sofa, though.  Daytime telly is bad enough (and I still can’t force myself to watch it, no matter how ill I am), but I’m also just not comfy on the sofa all day.  Odd, really, given I’d be quite happy in my bed 24/7 if I had summat to occupy myself with.

This is all one big crazy ramble now, largely caused by the constant fight to keep my withering eye-lids from gluing themselves together and calling it a night, but essentially it comes down to an “answers on a postcard” poser, really.  Any cunning plans for occupying myself whilst enforcing a strict “not out of bed” rule?

I’m determined to get better at listening and – hopefully, one day – pre-empting my body’s mood swings.  I used to be pretty good at it, but I seem to have lost my touch of late.  Here’s hoping it’s not too long before I get it back again…

*That’s not to imply that it is common badger behaviour to watch cricket all night, it was more an inference to nocturnal awakenings.

The dynamics of my home have changed.

I used to live in a small, 2 bedroom flat on the 1st floor of a block in a small court at the Southern end of Bletchley in Milton Keynes, just up the road from the Bletchley Park of Enigma code-breaking machine fame. It was just the right size for me and my best friend, K, to co-habit peacefully yet maintain our own private spaces. It was cosy.

Geographically, I remain on the 1st floor in a court just up the road from Bletchley Park, of Enigma fame. There are, however, no longer 2 bedrooms. Since K and I got together some 5 months ago, we have discussed getting rid of the 2nd bedroom and giving me somewhere to write and us both somewhere to use the computer and to have a desk for all the usual house-hold administration-type stuff which was taking over our table in our lounge/diner.

While I was in hospital over the last two weeks, K took it upon herself to enlist the help of some very good friends of ours to transform her old bedroom into our newly formed study/library. Out with the bed, the chest of drawers and the telly and in with the bookcase, a desk and chair and a lava-lamp (for good creative-juice flow) along with a filing cabinet and desk-drawer unit for storage. A perfect little work-hole for both of us.

But that’s not the significant change.

What’s changed is that far from being a small, cosy little flat, when I returned from hospital I discovered my home to be a vast expanse of space around which is had become necessary not to pop from room to room, but to hike breathlessly between oxygen stations.

I spoke previously of the adaptations I’m having to make following my recent challenges and down-turns in health and this is simply another one, but it’s one I have to confess I didn’t see coming. I love my flat – I love it all the more now I’m sharing it increasingly with K, who is slowly moving herself back across from her parents’ house – and I just never thought that somewhere this compact and beautifully self-contained could present these sorts of challenges.

I now have oxygen piped into every room of the apartment, but it still necessitates switching from supply to supply between rooms, with O2 support-less journeys between piping points. Whereas I used to merrily flitter away all over the flat, tootling back and forth between kitchen and lounge and bedroom as many times as my delightfully dimwitted brain would require before collecting all the bits I’d need for, say, doing a nebuliser, I now find that forgetting an element of the cocktail requires a 5 minute break before setting out to correct the mistake.

K is doing amazingly at running around after my forgetfulness, but it’s infuriating to me that I can’t do the simple things without gasping for air, that checking on dinner in the oven requires preparation, precision movement and a recuperation period.

I know it’s something I’ll get used to, just the same way as I’m slowly getting used to sleeping with my NIV, the way I’m getting used to wearing my O2. I’ve adapted in the past; even as recently as September I learnt how to budget my time so that I had the energy to do the things that matter most and not waste my daily or weekly quota on frivolous or unnecessary things.

And I know I’ll adapt to my new home, too.

Already, I’m loving my study (our study) and my brain is starting to whirl with possibilities of new scripts and projects and ideas – seemingly freed by the knowledge that if I so desire, I can shut myself away from the rest of the world and tap at my keyboard 24/7 until my masterpiece emerges.

After all, they say if you give a infinite amount of monkeys an infinite number of typewriters, they’ll eventually turn out the Complete Works of Shakespeare. I just need my new lungs to give me that little bit more time to bash at the keys and see if I can’t luck into Hamlet.

The hardest thing to come out of my recent downturn in form – as it were – is the adaptation I’m having to make to the way I do things and the things I do.

Yesterday, my big bro took me out in the afternoon to catch the new Bond movie (which is fab, incidentally, if somewhat dumbed-down Hollywood in parts) in the Xscape Cineworld in town. The trouble is it’s about a 200-300 yard walk from car to screen, including going up a floor, which took me a long time to negotiate and a lot more energy than I was used to.

I’ve recently become accustomed to walking a lot slower than I used to, although I did go through a patch of setting off at marching pace for 10-15 yards before being pulled up by unhappy lungs protesting at the work rate. I’ve now learned to start out slowly and continue in the same vein, but this latest infection has left me with a real need for permanent oxygen supply – something my pride has not quite caught up with.

Last night, K had some old work colleagues over for a girlie night in, which I couldn’t avoid and actually really enjoyed (she’s really quite girlified me). But even though it was in our place, and spent entirely sat on the sofas in he lounge, I couldn’t bring myself to wear my O2 in front of the group.

Silly, I know, but a good example of the adaptations I’m having to make to carry on as normal. I’ve got to get used to the idea that I’m going to have to have my nasal specs on when people are here and, more troubling for the moment, I’m going to have to get used to taking a portable cylinder out with me when I leave the flat.

It’s hard to describe the battle of heart and mind that’s going on at the moment – my head knowing that things are not only easier but also much better with the O2 on, my heart not wanting to be seen as a “sick person” by all and sundry who see me in the street.

One of the few blessings of CF is that to the untrained eye (and often to the trained, if you ask medical students patrolling the wards in hospital), the average person with CF doesn’t look any different to the average person without CF. Slightly skinny, maybe, but skinniness is somewhat in vogue at the moment anyway (for the girls, at least) so it’s not a big thing.

Going out with nasal specs and an O2 cylinder is another matter altogether. No one else does that. “Normal” people don’t travel adorned with extra air. Which means admitting to the world that you’re not the He-Man you wanted them to think you were. Or, at the very least, admitting that you’re “different”.

It’s one of life’s little ironies that I’ve spent such a lot of my life championing individuality to my friends, family and, more than anyone, the kids in my workshops, and now here I find myself aching to conform, to fit in, to blend.

But needs must, and I know I’ll come around to it. I just need to be more forceful with myself and understand that if I’m wearing the O2, I’ll be able to do more than I can at the moment, and hopefully “freedom” will be the spur that allows me to come to terms with it.

Failing that, anyone with any other ideas, please let me know!