Archives: Difficulties

I’ve taken a real step back over the last week or so, not so much physically (thank goodness), but mentally.

I’m all too aware that moods change on a regular basis and that it’s more than possible to be up one minute and down the next – that changes in the tone of life are rarely long-held and that normality will be restored with time.  But right now things just seem more difficult than they have been for a while.

I’m not entirely sure what kicked it off, although I suspect it was accelerated last Monday when I didn’t go to the cinema.  It seems like a strange non-event to become a catalyst for a wave of negativity, but it seems to have encapsulated a lot of hang-ups all in one go.

I was supposed to be going to see a flick I’ve wanted to see for a while with a friend of mine who had the week off, who then had to cancel as he’d promised himself to another mate for his birthday all day and couldn’t swing the time for the movie.  It wouldn’t have been much of an issue in the past, I’d have just gone along on my own.  But I realised that I had neither the strength nor the confidence to face going to the cinema by myself any more.

From there, things descended down what I suppose is a fairly inevitable path of reassessment of what’s going on in my life and unpleasant realities creeping into my consciousness again.

All of a sudden my inner-eye has switched focus from what I am still able to do with myself from day-to-day to what is now beyond me.  All I seem to be able to focus on is what I can’t do rather than what I can.  And there’s a lot more things that I’m unable to do than things I can still do.

Everyone has these periodic reassessments of life – where you find yourself taking stock of where you are and how it compares to last year, how it compares to where you thought you’d be, how it compares to where you want to be.  And everyone inevitably faces battles against what they expected and what they find – it’s the way life works that we almost never find ourselves in precisely the position we would like to be in.

Still, I can’t seem to shake the dark cloud that’s descended on me again, dragging everything around me into a mire of misinterpretation and moping.  I don’t like this me, I don’t like being so downbeat about everything and struggling to appreciate all of the wonderful things I’ve got in my life.  But try as I might, I can’t see the light through the dense forest of overwhelming bleakness.

Even the simple joys of spending time with K’s nieces and nephews has been taken away this week as they’re all coming through the early-autumn cough and cold season.

I’m trying so hard not to let myself get beaten down by the hard stuff and to enjoy the good stuff that’s still around but I just feel so bitter and resentful and angry with the world sometimes, but I’ve got no outlet for it.  I don’t have the energy to shout and rant and rave and let it all out.  I don’t have the energy to take myself off for a cathartic drive around the back roads like I used to.  I don’t have the energy or the inclination to do anything to help myself out of my funk and it makes me even more angry – with myself and with my situation.

It’s a vicious circle and I know that I’m helping to perpetuate it by allowing myself to wallow in my unhappiness.  I just don’t know how to take myself out of it at the moment – I can’t see the proverbial wood for the trees and I can’t remember what cleared my head of this fog last time.

The one hope I do cling to is that I know I’ve been here before – I know I’ve felt this bleak, dark blackness and I know it’s gone away, so I know it’s beatable.  I just can’t remember how.  And I hope like hell I’ll find the trump card soon.

PS – I’ve mixed so many metaphors here you could make a cake, so I apologise.  It’s not the kind of post I feel like re-reading to spell-check or clean up, though, so we’ll just have to live with it.

I’ve spent most of my day today sat in front of my shiney mac edit suite working on cutting together a pilot ad for Live Life Then Give Life.  I’ve been working on it, on and off like most things, for the last few months and we finally got all the footage in the can last week, with thanks to the wonderful Rheya who shot all the video for me.

This is the first time I’ve used my Final Cut Pro system to edit anything with a purpose, beyond toying around with it.  And boy, is it a steep learning curve.

The whole thing comes with bundles of documentation to go with it, ostensibly a guide-book, but it’s the kind of program where reading the book actually doesn’t do a whole lot to help you get to know the software – the only way to learn it is to just throw yourself into it and see what happens.

Patient as I am with technology(…), it’s managed to make even my cool-headed, even-tempered approach a little fraught at times.  It’s hardly surprising, though, since the whole edit suite is a package of 6 different programs, with an instruction manual 4 VOLUMES long – and that’s just for the video editing program.  All the other programs, like the soundtrack, titling and colouring software don’t have hard-copy manuals, only electronic copies within the software installation.

So I’ve been bumbling and fumbling my way through the most basic of practices, quickly establishing that everything I do has a) at least 3 other ways of achieving the same thing and b) they’re all quicker and easier than the one I tried first.

I’ve also discovered that a) I don’t know as much about this software as I thought I did at first and b) my brain isn’t big enough to learn all the things I need to learn in a single day just to keep up with the pace of the work I’m trying to do.

Similarly, it has emerged that a) everything in the instruction books is written into progressive lists of steps from A-X and b) it’s really hard to shake the habit of working through a whole day in list form.  And c) my brain is still at overload point.

Still, the ad is looking pretty good.  I had a bit of a mad one this afternoon, when I frantically text a bundle of friends for suggestions as to what music track I could put underneath it, which yielded some interesting results – anyone else keen on hearing ANOTHER inspirational clip backed by M People’s Search for the Hero?  Didn’t think so.  Nor me.

My music knowledge is pitiful, so I always fall back on asking the people I know who know their music and they all came up trumps.  The annoying thing about it is that I know all of the tracks (or almost all of the tracks) that they came up with, it’s just that my brain doesn’t work musically, so none of them occurred to me.  It’s an interesting side-note, that: if anyone wanted to think of a film-clip or quotation to fit something, I’d be right there, but asked to find some music to fit something, my brain draws a blank.

Amusingly enough, I had been cutting the piece to Mika’s Grace Kelly as a temporary fill-in with the right mood, and as I was getting my replies in, I finally managed to make the piece work with Grace Kelly underneath it, so as it happens I may not have needed the musical SOS anyway.  Still, it’s nice to know I’ve got people who still reply to my text messages, I suppose…

Tomorrow I’m off to Oxford in the morning for a quick once-over (nothing dramatic, I hope) and I’m hoping I’m not too tired to get back on with things in the afternoon.  That said, I’m not sure my brain can take 2 straight days of new information – it might over-heat slightly.

Full to the brim with new software knowledge I’m off to a) grab myself a cuppa and b) take myself to bed, where c) I hope to stop thinking in lists.

I feel like I should be doing a great, big week-long catch up on here, but I don’t seem to have the impetus to go back over the whole of last week and work out what happened or didn’t.  I seem to remember largely feeling pretty knackered, thanks, no doubt, to the IV’s.

The good news is that they really did the trick and we got on top of the infection before it could develop properly.  My CRP at the start of the course was at 89, which had reduced to just 33 after 7 days, which is good going.  The extreme fighting going on is probably the major cause of the tiredness, too, alongside the drug doses.

I also feel like I should be entertaining you all with a blow-by-blow account of my troubles with Sky, but I think I’m so tired of all this malfunctioning technology and maladjusted people on the end of helplines that I can’t even bring myself to muster up a random thread of expletives to describe the situation.

The IV’s finished on Tuesday and I was up at Oxford yesterday for a quick post-IV once-over.  The best news of the 2 weeks (and recent past) is that my weight is now up to a rather impressive 54.4kg – the heaviest I’ve ever been.  I’m hoping that I can keep it on and keep adding to it even as I slowly start to reduce my steroids.   My lung function had improved greatly, too, back up to 0.8/1.3 after dipping down to 0.6/1.1.  It may not sound like much, but when you consider that’s a  25% drop in lung-function,  it goes to show why I may not have been feeling my best.

I have continued, on-and-off, to look at and sporadically work on new projects and a couple of old ones, although clearly a lack of internet access is a bit of a hindrance to most productivity.  Of course, being offline and having nothing else to use my computer for, you’d have expected, I guess, that I would make some significant progress on the screenplay.  Rather impressively, however, that’s not the case at all, and it’s sitting just as untouched today as it was when I lost the internet connection 10 days ago.

Only I could manage to ignore a chance to turn a technological disadvantage into an advantage – looking the mis-guided gift horse in the mouth, as it were.

There’s not much else to add, really – I suppose it’s been a bit of a boring week or so, or certainly that anything interesting that has happened seems far too long-winded for me to dredge back up right now.  I’m still tired.

Ho hum, let’s keep rolling along and see what tomorrow brings.  Sorry for being boring today.

I’m in an advanced state of “how to deal with the dude at the window?”.

For reasons un-bloggable, the living room is currently out of bounds, so I’m holed-up, not unhappily, in the study, surfing the ‘net a little to catch up on some of my favourite, but not every-day sites.  Whilst I browse, the familiar clinking bang hits the wall and the half-creak, half-screech of a man climbing a ladder grows ever louder in my ear.

Sure enough, miliseconds later, armed with cloth and long wipey thing which has no discernable purpose beyond making it look like they’re actually doing something, a man appears at the window.

So now I’m stuck in that awkward zoo-like state of strangeness wherein you don’t know if it’s appropriate to turn and acknowledge him or just to ignore him.  You’re perfectly well aware that he’s there and he knows that you’re aware of it, too.  But where do you look once you’ve turned to look at him?

If you do acknowledge him, in what way and for how long?  Obviously, being in a first-floor flat, opening the window for a quick “how do you do?” isn’t going to be a warmly welcomed idea, and communicating through double glazing is hard enough when you can wave and shout and point at things, but given his donkey-on-a-pole status with buckets, chamois and wipeys everywhere seems a likely impossibility.

Is it rude to ignore someone who’s closer to you than it’s natural for one man to be to another if they’re not considering amourous relations or celebrating a sporting triumph?  Does the pane of clear sheeting between you justify the pretense of ignorance?

I figure that most people opt not to acknowledge their window cleaners if they have something sufficiently distracting to legitimately hold their attention away from the window (say, writing a blog or performing micro-surgery on a wasp unlucky enough to die slap-bang in the middle of the desk).  This conclusion leads me to believe that if I, being so occupied, were in fact to turn to acknowledge the presence of the ladderman, I would in fact so startle him as to risk his ability to maintain his balance and thus his position some 3 metres off the ground.  Not wishing him to become too prematurely re-aquainted with the earth, I decide on grounds of health and safety to ignore him completely and settle back, contented with my  caring and considered manner in dealing with the problem, into constructing my witticisms.

For some reason, though, I can’t escape the feeling that he’s just climbed down and moved on the next window whilst muttering to his mate, “That miserable git up there has nothing better to do than pull the wings off flies and yet he can’t even muster up a wave while I clean his bleedin’ windows.”

I’m in a very weird situation with my body at the moment.

On the one hand, it’s reeling from the effects of the infection and is suffering the usual IV hangover that comes with the first few days of pumping extremely high doses of pretty hard and powerful drugs into your system.  On the other hand it’s simultaneously feeling a huge surge of energy and general boost that comes from having large doses of steroids crammed in on top of everything.

It can’t decide whether to be super-tired or super-energised and it’s seemed to settle on some sort of manically-driven half-way house, where I feel like I can take on the world if only I could have a 10 minute cat nap first…

Still, the main thing is that whatever’s happening, it’s definitely doing the right thing.  Without a doubt I feel hugely better than I did earlier in the week, tiredness aside, and I know that if my appetite is returning (or back with a vengeance) – even if it is steroid-related – then I’m definitely on the mend.

I’ve never been particularly good at recognising (or acknowledging is a better term, I suppose) the signs of an on-coming infection, so I’m quite pleased not only that I picked up on it properly this time, but reacted in the right way by getting myself to Oxford as soon as I could and not just waiting around for my next appointment, by which time it could have taken much greater hold and really started to kick my butt.

I was back at Oxford yesterday for a physio session, which is also a cunning ruse on the part of the team to give me a quick, unofficial once-over to see if there has been any improvement.  They think we don’t know these things, but we really do.  Still, cunning or not, it was reassuring to know that the team all felt I was looking better.  Being multi- rather than mono-syllabic must have helped.

Strangely, this period of minor health-hiccup has coincided with a bright spark of inspiration and I’ve finally broken the back of the script I’ve been working on for the last few months.  I’m now 70 pages in, about 20 pages from the end – at a guess – and it’s all coming together beautifully.  I actually can’t wait to sit in front of the computer and bash out the next six pages each day and often feel like I could do more, had I the alertness to keep focused for long enough.

Still, I’m hoping to have finished my first draft by the end of the weekend and to have redrafted within the week.  The stages between my first and second drafts are very quick – it’s pretty much a read through and polish with a couple of additional scenes, at which point I’ll then sit and work through it much more slowly and may seek out a couple of opinions from people who will give me good, honest notes.

Funnily enough, a great friend of mine for whom I am nominally writing the script, happened to text me on Wednesday to see how I was doing (health-wise, not script-wise) and it was the same day that the whole things became clear and concise in my head, so maybe there’s a spooky little connection thing going on in my head there, somewhere.  Whatever it is, I’m really enjoying it.

After waking completely breathless, despite still being on my NIV (which is quite hard to be breathless on) and finding myself standing in the bathroom fighting for air and trying to cough and clear my chest at the same time, it became apparent that my sleep/breathing/NIV difficulties were, quite simply, down to a big ol’ infection which I’ve obviously been brewing for a good few days now.

Horrible as it is and horrible as I feel, it’s good to know the causes of all the disruption in my patterns. I went to Oxford yesterday not looking for answers, but knowing that “all” I needed was a swift course of anti-biotics (hopefully the same ones as last time, otherwise things get complicated with sensitivities and allergies) and some extra physio.

Monday night was the worst night I’ve had in quite a while – waking at 1.30am with breathlessness and a large mucus plug on my right side and the complimentary headache which comes with it all, I then spent the rest of the night trying to find a comfortable and non-distressing way to sleep, which I managed for short, 20-minute spells on-and-off for the next 5 or 6 hours. Needless to say by the time I got up I was more exhausted than when I went to bed.

In Oxford I was pretty spectacularly monosyllabic with my team – which curiously meant I think they knew exactly what was going on; they know me pretty much inside out now. I felt really sorry for them, though, because I was so exhausted and feeling so sorry for myself that I really wasn’t much cop as a human being yesterday – offering hardly anything beyond the necessary replies to medical enquiries.

Still, I escaped the dreaded thought of ending up on the ward (which would just about have finished me off, I think) and came home with my first few doses of IV’s to draw up and the promise of my full delivery arriving some time later today.

The only minor hitch of non-planned IV starting is that I didn’t have time to get a preparation dose of steroids down me, which means I’m in for a couple of days of joint and muscle pain as my body reacts to the IV Meropenem before the oral pred [prednisolone, steroid] kicks in properly. I’ve also now got a nice collection of ulcers on my tongue in protest at the toxins being shoved into my blood stream. Can’t blame my body really, can you? I think I’d protest, too.

Reacting to IV’s is pretty much a common-or-garden response for me and is weirdly reassuring, because if my body is feeling it then you can bet that the bugs are, too. It may take a little longer to kill them off, but I know things will turn around soon. It means having to put up with a few days of tiredness (which was there anyway) and soreness, but at least now there’s the knowledge that things will start to improve by the weekend, rather than merely a looming sense of something not being right.

I’m off to do today’s first session of physio, then to take myself back to bed to sleep off my morning dose, in time to get up and repeat the dose and do another physio session. I do love being on IV’s…

NOTE: For the stats-lovers amongst you, my Lung Function yesterday was 0.6/1.1 (that’s roughly 15/20% according to this site), my Sats were 90% – not very impressive. My weight, however, was a massive 53kgs (fully clothed), so I guess that’s my silver lining.

Like all good sequels, Headaches have come back with a vengeance, making sure to be bigger and better than before.

Having thought myself a chronic hypochondriac before the weekend, three straight mornings of horrible, horrible headaches have convinced me that it’s not just a little something to make me paranoid, but that there’s definitely something up.

Unfortunately, I have no idea what it is.

The headaches would appear to be CO2 related (as with last time), which would suggest that Neve isn’t doing enough work, or isn’t working efficiently enough to clear it off while I sleep. However, the headaches are also coinciding with an uncomfortable amount of neck and back pain, too, which may mean that it’s not anything to do with my O2/CO2/Neve settings at all.

I spoke to my physio at Oxford today, who suggested adjusting my NIV settings for the night and seeing if it made a difference (it didn’t last night, but she recommended trying it again tonight) and then said she’d arrange for the docs to see me tomorrow. I was supposed to be joining her for an exercise sesh tomorrow, but that feels a little way off at the moment, so we figured we should use the appointment to get myself checked over by the team rather than wait for my clinic appointment on Thursday – if I am coming down with something, we need to make sure we nip it in the bud ASAP.

It’s a little demoralising looking at the prospect of another 2 weeks of IV’s less than 3 weeks after I finished the last course, but I’ve got so little room to play with now that it’s no longer an option to just “wait and see how things pan out”.

The worst part of it at the moment, really, is not knowing what they are or what’s causing them. If I was sure of their origin, it’d be easier to gear myself up for a fight to get rid of them, but until I know where they come from, it’s just a case of sticking them out. They are usually gone by the early afternoon and then I don’t feel too bad.

Whatever is causing them, it’s a pretty safe bet that it’s all been kicked off by the seeds of an infection knocking around down there, so antibiotics would appear inevitable.  We can only hope that something obvious presents itself in the next 24 hours or that once the antibiotics take care of the bugs, everything settles back down to normal.  Fingers crossed, anyway.

The good news is my tiredness seems to have lifted, mostly. The bad news is that I woke up this morning with a roaring headache and couldn’t shake it for most of the day.

I’ve noticed that being chronically ill gives you a bizarre form of semi-hypochondria: every little tweak of a muscle, snuffle or sneeze suddenly seems laden with horrible possibilities.

This morning’s headache, for example. More likely than not, it was a simple, common or garden headache of the type we all wake up with from time to time. To my slightly addled brain, however, it could be a recurrence of the old CO2 headaches I used to get before I started on my NIV overnight. The issue there being that since I’m not actually using overnight NIV, it would imply that my lungs have deteriorated further and the NIV isn’t working hard enough to clear the CO2 from my lungs while I sleep.

The chances of this being the case – considering there are no obvious other signs of major chest complaint (no significant drop in lung-function, no increase in volume of sputum etc) – are pretty low, but it doesn’t stop my brain working the scenarios over in my head almost constantly.

Most importantly, I guess, is the fact that I can see my slightly skewed look at things and take a bit of a step back from it. I’m not fretting my head off about it, but it is still playing on my mind a little. I’m sure I’ll sleep soundly tonight and wake up tomorrow with no problems at all, and I’ll feel foolish for even letting the thought cross my mind. But when you’re sitting on such unstable ground, you get a little hyper-sensitive.

I shall be trying to get back into my exercise regime again tomorrow, having missed almost a week now through tiredness. I shall also be attempting to get back into the screenplay again, having failed to match yesterday’s 10 pages with any pages at all today. I’m a bit hit-and-miss, me.

On the plus side for today, K’s little 2 year-old niece and 15-month old nephew (I’m sure I’ll have got that wrong now, I bet I get shot for it, too) came over for a visit today, which was just gorgeous as they were both in such fantastic moods. Even though I was feel really rough with my head banging and pretty short of breath, I managed to have a lot of fun. Luckily, I could play mostly sat down on the sofa or the floor and not move around much (I left policing duties to K and their Mum, who would race after the little one as he crawled off at top speed to reek havoc in other rooms).

I spent most of the time being either a fairy or a ballerina. I’m not quite sure what that suggests our niece thinks about me, but I’d like to think it means she understands that I’ve got a wonderful imagination, just like her.

Even when you’re feeling tired and rough, there’s something truly infectious about children’s laughter – it reminded me what I used to love about working with the Youth Theatre. Having a child’s simple outlook on life is so rare and so delightful, to focus 100% on what’s going on right now with no thought for the history or what comes next.

With two children as gorgeous and laughter as infectious as theirs, it’s impossible to say I’ve had a bad day.

“We do not inherit the earth from our parents, we borrow it from our children.”
Native American Proverb

Sunday may have been a great day, but I’m certainly paying for it now.  Three days on and I’m still shattered and my chest is tremendously upset about something, though quite what it’s problem is I don’t know.

I feel tight, I feel tired and I feel pretty unhappily breathless, too – a great combination for poor K as she has to put up with a very grumpy Oli (for a third day in a row, too!).

I don’t know if it’s all Sunday-related or if part of it is the curse of the project-mention in the blog, but something is conspiring to give me a really rough ride this week and I don’t like it.

I was supposed to go to Oxford today for an exercise sesh with the physio, but there is no way my body is going to put up with 2 1/2 hours in a car and half-an-hour’s worth of treadmills and step-ups.

As if to rub the proverbial salt in, I’ve also not been sleeping at night now, either, which just makes the day-times seem worse.   It’s all one-thing-on-top-of-another and I know it’ll sort itself out soon enough if I just keep resting up and keep my calorie count high, but it’s a real b*stard to go through right now.

I suppose the lows are always harder to deal with off the back of big highs, too, since you’ve had that much further to fall, but I’m doing my damnedest not to let it get me down.  The trouble is, I just don’t have the energy to be up.

It’s a funny thing, that.  Being “down” takes no energy at all – it’s almost like a default position, whereas being “up” requires an investment of energy, even if it’s just a small amount.  I think that’s skewed, someone should write and complain.

Still, there’s nothing better than writing a post on SmileThroughIt to remind me that I’m supposed to be SmilingThroughIt, so I’m off to search YouTube for videos of stupid people falling off logs and bumping their face.

WAY too hot for training today, so why on earth did it turn out to be the first session I’ve done since… Tuesday, I think? Maybe it’s guilt.

Anyway, got through 8 mins of steps and then did half my strengthening – 3×8 curls and 3×8 shoulder raises. I think doing all of the strengthening in one go with the step-ups is too much – I noticed a distinct lack of energy the next day, which I’m taking to be residual tiredness – so I’ve decided to separate them into upper- and lower-body exercises and do them on alternate days.

SIDE NOTE: Weight is now up to 52.4kg – I think this is the heaviest I’ve ever been, or at least close to it.  Hope it keeps going on.