Smile Through It II: The Next Chapter

Chasing dreams, because I can

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Coming? Going?

Posted by Oli on Tuesday 23rd October, 2007

I’m not really sure at the moment, if I’m honest.

My body and my mind are all over the place and I can’t decide what to do with myself from hour-to-hour, let alone day-to-day.

Frustration is playing a key role in whatever I am doing at the moment, though, driving me to distraction.

For the last week or so I’ve been sleeping incredibly badly – not being able to get off to sleep and then waking every hour or so until the early hours when it tends to increase to to a whopping 20mins of sleep at a time.  It’s been driving me bonkers.  Also, of course, it’s left me with very little energy to do anything with myself all day.

Once I’m tired, I’m also absolutely horrible to be around.  I’m sure most of us aren’t at our best when we’re lacking a bit of shut-eye, but I know that when I’m sleepless I’m at my very, very worst.  For all the days K’s spent laughing at me and with me when we both get the giggles when we’re tired, I’m sure she’s now found out that when I’m really tired giggles are nowhere to be found.

Lack of sleep also causes more and more worries as well.  I’m well aware of the fact that it’s when our bodies are at rest that they repair themselves and set themselves up for another day.  As you’ll know from the more recent blogs, I’m also increasingly aware of the frailty of my body and the desperate need it has to keep itself ticking over.  Missing out on crucial rest time bothers me big-time because I know how precious a resource it is.

More than all of that, though, the more tired I am the more frustrated I get with myself and with the things around me.  My energy levels are so low that doing anything other than sitting and surfing the ‘net causes me to feel like I’ve been running around a football pitch for hours.  Without the rest it needs, my chest will start to moan and complain if I do much more than make a cup of tea and I can really feel my auxiliary muscles working overtime just to keep the oxygen flow going through what’s left of my lungs.

I’ve been struggling for the last couple of months with pain in my back and neck where the over-worked auxiliary respiratory muscles are tensing up and causing all kinds of different, unpleasant aches and pains, which in turn makes it harder to sit properly or carry myself as I should, which only then serves to exacerbate the problem with my back and neck muscles.  It’s the very worst of vicious circles that no one seems to have identified a way out of yet.

There are so many things I’d like to be doing with myself at the moment, projects I’d like to be working on, writing I’d like to be doing, but it’s the most I can do to get through a day without going mad at the moment.  My brain certainly doesn’t feel switched-on enough to achieve much beyond the occasional email.  I don’t think I’ve had a creative thought-thread for a couple of weeks now, which really gets me down.

Still, it can’t all be doom and gloom – there’s good things in the world. (Best not get on to last weekend’s sport if I’m looking for sunshine, eh?).

My bro was back for a couple of days over the weekend, which was really nice – he’s away so much doing this, that and the other that it’s been really good to see him and catch up a bit.  He seems really happy in what he’s doing, which is so good to see.  I get a real kick out of seeing my family and my friends doing things they really enjoy – I suppose it’s a kind of vicarious pleasure that I’ve lived with for a while now and I have always felt it most strongly for the things my bro gets up to.  If he’s happy, I’m happy for him.  And he’s always happy, because he’s that kind of bloke.

I know I could be doing a lot worse, too.  My chest isn’t 100% – an understatement, I suppose, of rather dramatic proportions, but then everything is relative – but it’s holding on there for the most part.  It could be much worse and I could be properly laid-up, which I’m not, so I should really not be complaining too hard.

I suppose that when frustration bubbles up it’s often hard to see the good for the bad – the wood for the proverbial trees, as it were – and it’s all too easy when tiredness attacks to let it drag everything down with it.  Positivity is a precious resource in and of itself, so I suppose what I really need is just the energy to go and mine some more of it.

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3 Responses to “Coming? Going?”

  1. Bold Bright Eyes said

    you may already know this but just to keep in your mind that things will get better can sometimes help. you are an inspiration in that you have already come so much further without giving up than some people would have dreamed. my grandmother is a breast cancer, kidney cancer, and massive heart attack survivor and i know that her motto in life is keep your chin up and i wouldnt normally quote her but in this case “keep your chin up” i stumbled upon your blog i hope you dont mind.

  2. Toria said

    I don’t know if it’s remotely your cup of tea, but reading today’s post really made me think of some of the patients I saw last year in clinic. Though none of them were as poorly as you, we did still see some pretty serious cases.

    Like with you half their problems were exacerbated by irregular sleep patterns, if not caused by them. One of our sickest patients barely got more than a few hours sleep a night, and was constantly shattered and it made her miserable, which as I’m sure you’re more than aware makes it ten times harder to keep up that essential positive attitude.

    This led me to think, somewhat predictably, that maybe some alternative therapy would benefit you hugely. It’s clearly not going to provide any miracle cures but I can’t help thinking your poor little body just needs a break, something that will make it just relax.

    All the drugs and physio we do is wonderful, and there is no question that we’d be dead 100 times over without it, but none of it is very easy going on the system. The strain of AD, the toxicity of the drugs, all the organs and tissues trying to limp by on low oxygen levels. I’m a big believer that sometimes you need to do something that is just nice :o)

    Anyone treating you would obviously have to be very careful, and only be able to do a tiny amount at a time, but I really think it is worth looking into, even if it’s just a short massage to loosen up your back. I can think of a few acupuncture points that may be helpful for getting you to sleep better, but realise I don’t know anywhere near enough to be able to safely help.

    Anyway I’m waffling as ever, but out of all the therapies available I think maybe cranial-osteopathy may be best as it is so gentle, or possibly even hypnotherapy (it doesn’t involve dangling pocket-watches, just a calm voice talking and sending you off to sleep, really it’s great!!)

    I can ask some friends to recommend local practitioners if you want, just let me know.

    I have faith in you, your new lungs will be here soon xxx

  3. Frizzymum said

    Sending you some of my spare ‘Pollyanna’-type positivity… use sparingly. Although a precious resource, I’ve found it can be harmful in large doses, as more curmudgeonly friends tend to want to start punching me. Xx

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