Archives: Improvement

I was back in Oxford today for the second half of my annual review and surprisingly, given the distinctly non-positive vibe that I’ve been getting from recent hospital visits, I actually came away feeling good today.

The diabetes tests looked clear – or at least not significantly abnormal, my blood sugars remaining pretty much within the normal range consistently for the last couple of weeks while I’ve been measuring them, which was a good start.

Even better, though, was my conversation with my consultant, the ever-wonderful Dr Bennett, who is encouraged by my progress since June.

I’ve been more and more breathless recently and it’s started to impact more and more on what I can and can’t do (as you’re no doubt aware if you’ve been following along).  Raising it with the team today I was fully expecting downcast looks and a feeling of, “that’s pretty much where you are now,” and facing a determination to put up with it and keep fighting.

To my immense pleasure and surprise, DocB felt that it’s something we can tackle, given the right effort and application and can aim to improve my breathlessness and stamina and bring my quality of life back up.

Looking at my health in general since my downturn in June, she suggested that although I’d had a really bad month and the infection had hit me very hard, it was encouraging to see that my lung function had pretty much returned to what it was pre-exacerbation – about 0.8./1.3 (actually dropping slightly to 0.7/1.2 today, but I was expecting that, and to go on IV’s, anyway).  What this indicates is that the infection, whilst making me seriously ill, doesn’t appear to have any lasting impact on the conditioning in my lungs.

What has been affected, clearly, is my exercise tolerance and muscle mass, both significantly weakened by spending the whole month in bed and by not being worked on in the four weeks or so since.  It is DocB’s belief that if we can work out an exercise plan, with extra oxygen support as necessary, and work to improve my cardio-vascular fitness, there’s no reason we can’t combat the breathlessness.

This was all news too me – good news, to be sure, but news all the same.  I had resigned myself, I think, to the downward slope of things ahead and didn’t really think there was much of a way around it.  So it feels pretty great to be told not only that there’s potential improvement around, but that the docs actually feel like it’s achievable.

Clearly, it’s not going to mean a massive turn around, but if I can raise my tolerance levels enough to manage a trip out of the house a little more often, maybe a stroll around Borders once in a while, it’ll make a big difference to keeping my spirits up.

It’s doubtless going to be a really hard slog and I don’t quite know how I’m going to deal with it at the moment.  I’ve never really pushed myself really hard through exercise and I’ve no doubt that whatever program I’m given, whilst laughably pitiful for regular mortals, is going to be a hell of a job for me.

But when you’re facing the months ahead that I’m facing, I suppose motivation should be too much of a factor – after all, my entire life right now is focused on stretching things out as long as I can until that call comes.  If doing 5 minutes of step ups a couple of times a day is going to help achieve that, I can learn to tolerate the gasping and rasping that comes with it.

What seems to consume me more than anything else at the moment is an overwhelming desire to “do” something – anything really. I spend so much of my time sitting around, either watching TV or surfing the internet looking for articles and information which may interest, entertain or educate me that I just crave the normality of “doing” something.

It doesn’t help that my favourite films and TV shows are ones showing people with high-powered, mile-a-minute jobs which demand 100% attention from them at all hours of the day. I think I’m a frustrated workaholic. There’s so much I want to be doing which I just can’t do because my energy reserves are lower than an Iraqi oil refinery once the US has taken it’s “share” from the depot.

It’s one of the sillier frustrations with my life and I suppose it’s only natural when one is confined within the same four walls 24/7 with barely a break for air. I guess it’s also the attraction of being well enough not to have to think about whether I’ve got enough energy or if I’m well enough to do a job or make a trip or take a meeting – a pleasure I’ve not enjoyed for a good few years now.

When I think about it, my situation now isn’t all that different to how it was a few years ago, it’s just that all my timescales have telescoped. Whereas when I was at work I had to think about whether I had enough energy to do something on both Tuesday and Wednesday, I now have to wonder whether I can do something at 10am and 11am. All that’s changed is the timescale and the size of the task.

When you look at it like that, it takes away a touch of the rougher side of life. It’s all too easy to dwell on the things you miss most when you’re pretty much invalided out of life. But making the fight seem familiar somehow lessens the blow and makes things more comprehensible, even if it doesn’t necessarily make them any better.

It’s all about perception – something I know I’ve written about on here more than once – and the advantage of perception is also its curse, namely that it’s easy to have when you’re feeling OK, but it’s the first thing to abandon you when you start to slide backwards.

Here’s hoping I can cling to this little slice of perceptive thinking for at least a few days and keep myself in an upbeat mood. I much prefer me when I’m like this.

It had been my intention to sit down at some point and fill in the blanks of the past months with an epic, multi-post entry to tell my tale up to today (or up to whenever I got around to posting).

Luckily for all of you guys who are still bumbling across the site in the vain hope for a new entry, I’ve decided against it.

There are many reasons why I should and shouldn’t give up a full account of the last 4-5 weeks during which time I’ve managed to post a grand total of 0 times.

Over the months since I started this blog just before Christmas, I’ve shared a lot of the ups and downs, highs and lows, peaks and troughs of everyday life and tried to use this site as a tool to force myself to keep a bit of perspective on the whole thing – life in general and my health.  Sitting here now, after quite possibly the worst month of my life, it seems strange to say it, but I want to focus on moving forward more than raking over the past, even the not-so-distant past.

So, what you get is the shortened, edited, cut-down, weight-watchers version:

At the end of May, after my birthday, I was running pretty low, energy-wise.  In the middle of this low, I managed to pick up a cold.  Fighting the cold was one thing, but as is almost inevitable with CF, the amount of time and energy my immune system was expending  on fighting the cold virus meant I had no defences left to look after things in my lungs.

Before you could say, “seriously guys, I don’t feel very well,” I had collected myself a roaring infection and an inability to extricate myself from my bed.

After a bit of family decision making, I returned to the warm and caring centre of the family fold for my Mum to switch back to nurse/carer role in looking after me 24/7.

Even that wasn’t enough, though and within a week I was on the ward  in Oxford, having spiked an impressive temperature and gathered the mother of all infection markers.

Levels of infection in the body are most easily assessed by measuring the levels of C-reactive Protein (CRP).  Don’t ask me what it is, I just know that it should, in a normal person, be in the 0-4 range and that in PWCF it’s frequently around the 10 level, as we are often fighting low-level infection constantly.  Anything over 10 gets worrying and 20-30+ is cause for proper concern.

When I was admitted to the ward, I was told that the labs doing my bloods had stopped their CRP count when they got to 160.

Now, while I should be monumentally freaked out by all of this, I still can’t help but feel slightly short-changed as my good friend Emily once managed to mark up an impressively gob-smacking score of 400 – but they obviously like her enough to keep counting and not just give up when they get past “bloody high”.  Oh well, Em’s always done things more impressively than me, anyway.

In the midst of all this, there were lots of antibiotics being hurled around, different combos being tried here and there and various other drugs being tossed in my direction.

Most upsettingly for me at the time was being put onto a short course of steroids, which, at the dosage they were giving me, all but removed me from the active transplant list – my one chink of light in a world of enveloping blackness was being blotted out and I had no control over it.

June has been a true nightmare month, in every sense of the word.  From beginning to end I was struggling through every single day and at times it seemed like there was nowhere to go.  It is, without doubt, the closest I have come to meeting my maker and there were times over the last few weeks when I have honestly believed that someone was waiting outside the door with a conveniently held bucket for kicking.

One of the reasons I can’t take myself into much more detail than I already have is that a lot of the last few weeks is already a haze, my mind working it’s magical ways to blot out the middle-ground of strife and tedium and leaving me with but a few key moments lodged in my brain.

Thankfully, most of those key moments are the ones which give me the spur to push onwards and upwards and to keep fighting for my transplant.  There have been times in the last month when I’ve been in a darker place than I’ve ever been, but the knowledge that it’s possible to pull back from that and to recover to some semblance of normality again is reassuring beyond expression.

That’s not to say life is all sunshine and roses now – there’s a lot of things which are still a struggle and my world can still be a lonely place at times.  But I’m still here, I’m still fighting and I’m still able to laugh – at myself and others.

It’s been fitting that over the course of my last battles I’ve not managed to post anything on here, because smiling was the last thing on my mind through most of it.  Now, though, I’ve got something of my mojo back, and I’m revving up for the run-in to my new life.

Bring on the lungs, baby, I’m ready to roll.

Believe me, it’s amazing myself as much as anything, but so far this week, I’ve exceeded my target of 6 pages a day three days in a row – how brilliant is that?

I’ve no idea where this sudden glut of motivation or inspiration has come from, but suddenly things seem to have developed their own sense of momentum and I’m rolling along at a cracking pace and really enjoying myself, too.

It’s not just my new script that’s coming on leaps and bounds.

Live Life Then Give Life is still going strong, expanding all the time and the team behind it has grown and solidified into a (hard)core of people dedicated to improving organ donation in this country.  It’s a privilege to be involved with such a great campaign and group of people, who all work incredibly hard and really spur each other on to greater and greater things.

National Transplant Week, set up and run by Transplants in Mind (TiM) is in July and we’re all working feverishly to see what ways we can come up with to publicise it and raise as much awareness as we can.

There’s also the new issure of CF Talk which is coming together really nicely and now sits with the designers, who are currently working their very particular brand of magic on it.  I love the work our designers do on the mag and this is always the most exciting stage of an issue for me, where I hand them the copy and they come back a week or so later with some cracking imagery.

What’s always really funny about the whole process is that they are fantastically open to comments and ideas on all of the stuff they do, but there’s so rarely anything I want to change with the stuff they come up with it almost always goes to print identically to the first draft version I get sent through.  I suppose it’s a perfect illustration of a team working in harmony together to get all the elements looking their best.

I weary at the moment that it is almost always when things are rolling along at their best that the trip-ups tend to come.  But at the same time, knowing the up-and-down nature of my health at the moment, it seems all the more reason to enjoy doing all of these things while I can without fretting about the “what ifs” or the “what’s coming next”.

I suppose it’s something akin to parents trying to wrap their children in cotton wool. If you never allow your child to go out in the garden and play in the mud and put themselves at risk of germs and all the things children come into contact with then they may very well not get ill and stay more healthy than other children, but they also lose a large chunk of what it is to be a child – to explore the world and find out first hand that mud is mucky and worms don’t taste very nice.

And so it is for me at the moment.  I could easily shut myself away in my bedroom and rest 24/7, spending my days eating, sleeping and doing treatments.  But I don’t want to look back at this time pre-transplant when I’ve finally had my op and think of all the things I missed out on because I was too worried about what would happen next.

If a downturn is coming, then so be it – I’ll take it on the chin and ride it out like all the others.  I hope I can stave it off and continue to enjoy the good side of life.  But whatever happens, it’s not going to stop me doing the things that mean something to me.

I say, sometimes a little bit of communication goes a long way.

Following my recent let-down from Allied, where I was left waiting for delayed delivery after delayed delivery, I sent off a “strongly worded letter” to them and got an almost immediate response.

Now, there’s two parts to this story – a personal and a “professional”.

No sooner, it seemed, than Allied had received my letter, they were in touch and full of abject apologies for the confusion and the misunderstandings.  And, in fairness to them, it was a very genuine and “un-corporate” apology, too.

Having explained in my letter that I can’t really carry their PD300 cylinders comfortably and really need the lighter weight PD430s, they straight away put me onto a fixed weekly delivery, commencing this Monday, of 6 PD430 cylinders to last me the week (which is more than enough) and they will continue to arrive every Monday unless I phone them to let them know they won’t be needed.

I have to confess, I’m over the moon.  To finally have access to the right amount of truly portable oxygen in quantities enough to last me a whole week of doing whatever I please is fabulously free-ing.  I’m looking forward to a new ability to do what I want by myself without the oxygen-planning issues I’ve had up to now.

What concerned me, though, was that my “solution” with which I’d been provided was a panicked stop-gap to “shut me up” and get me off their backs.  The cynic in me was squirming at the thought that if I was contented then I’d stop writing letters which get copied to the CF Trust and Department of Health.

It was important to me to make sure that it wasn’t just me that was getting the best of the sevice, but that other people in my position who weren’t so willing to speak up, or didn’t know there were other options available, can get the best, too.

To my immense surprise, and no little pleasure, I discovered that far from “fobbing me off” with the appropriate organisation, the team at Allied are really keen to improve their service and get things working as they should be – and to involve me in the process.

Already I’ve been told about a new cylinder they’ve aquired which is not only lighter than the PD430, but lasts longer, too, and it is Allied’s expressed intention to prioritise the CF community with them.

PWCF are, I think, a unique breed among oxygen users in that they are the youngest and most independent of the type of people who may need home oxygen therapy.  At the same time, they are often the smallest and weakest of the lot, too, meaning that the “portable” oxygen tanks need to be pretty light to really be “portable”.

Allied seem to have taken this on board and are working hard to identify PWCF among their patient lists to make sure they are the first to benefit from the new cylinders.  All GPs who prescribe home oxygen are suppose to add a code to the order form to indicate the medical condition for which the oxygen is being supplied.  Sometimes this doesn’t happen and Allied are unaware of a patient’s CF status.

For this reason, if you’re reading this and you’re a CF patient who receives  oxygen from Allied, you should email Sue Brooker at communication@alliedrespiratory.com to make her aware that you have CF and that you would like the light-weight cylinders.

Above all, communication is the key here.  I am actually really confident that Allied are doing all that they can to improve things at the moment – and I honestly never thought I’d see myself writing that.  But if they don’t know a person’s needs then they can’t do their best to deal with them.

As with many things in life, communication is vital – making sure everyone’s on the same page and that people can get the things they are entitled too, whether it be oxygen, money, services or anything.

Every good relationship thrives on good communication and this experience has taught me a lot about how little is needed to make a difference if you just talk to people.

This is why I don’t like tiredness. My mini-rant (was it mini?) yesterday has been playing on my mind all day.

I stand by what I say, because it is all incredibly annoying and occasionally morale-sapping, but at the same time I feel a bit petulant for having brought it up in the first place. I suppose it’s the “suffer in silence” side of me coming out again.

Lest anyone get the wrong impression yesterday, I don’t hate my life. I have a huge number of very positive things going on in my life and I’m surrounded by wonderful people. I enjoy every day (some more than others) and like to make the most of what I can do with each one.

Although I may not be able to do the things I did this time last year, and although I may get a little down about being in a different situation which places more demands on my sense of sensible-ness than it has previously, I still manage to do the things that matter most to me and living in this way has given me a wonderful sense of my priorities in life.

I received an email today from someone who had obviously got my address from the message boards and wanted to ask me a couple of questions about life etc. In my reply to her, I realised just how much of a positive thing being on the transplant list can be.

Rapidly declining health, or a low-health plateau such as I’ve hit at the moment, is wonderful for really hammering home what really matters in your life – what you choose to expend your energy on.

To use an analogy, a day’s evergy is like a bottle of water: every day you wake up in the morning and you fill your 2 litre bottle up to the brim with fresh water. Over the course of the day, the various things you do each require different amounts of water. Make breakfast takes, say 100mls. Do some exercise and you’ve spent 500mls. Sit as your desk working for a few hours and it’s a few hundred mls more.

When you get the stage I’m at, suddenly you’ve not only got less water – a single litre, maybe – but it also takes more water to do things. Cooking a meal becomes 250mls, which is 1/4 of your daily allowance taken up already. Walking anywhere, for even the shortest amount of time may be up to 500mls – half your day’s worth gone. And on the worst days you can be doing as little as possible and still find that you’ve got a hole in the bottom of your bottle and you’re leaking energy all over your shoe.

So when I wake up and fill my bottle in the mornings now, I know that my ration is that much less than I’m used to, that I need to make sure that the water I am going to be pouring out of the bottle goes in the most sensible of places.

Sometimes it’s not even the most sensible place – sometimes it’s just the place that matters the most. But you know that if you’ve only got a finite amount of energy for the day, there’s no point wasting it on things of little consequence. It means you spend it on the things that really matter.

Yesterday, thanks to a busy weekend, I had a very small bottle of water. But I knew that the most important thing to me was to see and spend time with my Godson. I only manage a couple of hours before I ran myself dry, but those were two of the best, most enjoyable, most pleasure-focused hours that I’ve spent with my Godson for a long time – because I knew I was using my ration for him. It didn’t matter to me that the rest of the day was a total wash-out and that I would be incapable of doing anything else: I was more than happy to use my ration on him and him alone.

The thing I dislike most about tiredness is that loss of perspective that it delivers – how it takes away your ability to see things in the light you normally see things. It’s not about losing the facade, which I seemed so keenly aware of yesterday, it’s about losing the bright side – losing the very positivity which drives me forward each and every day.

I try to keep my water bottle as full as I can and I try to replenish it as frequently as possible. But some things are worth emptying it out for – and it’s when you realise what those things are that you really strike gold.

It’s been a bit of a gap again since I last posted – I seem to have lost my blogging momentum, although I have a feeling it’s because the evenings are much harder for me now than they were. I used to write my blog posts right before I went to bed at 10 or 11 at night, but now I’m usually struggling quite a bit with breathlessness by then and sitting at the computer is about the last thing I want to do with my bed calling me.

Still, I’m sure I’ll work myself back into a groove somewhere.

I had intended to sit here this morning and launch off into another rant about Allied Respiratory (yup, still rubbish) but I’m not sure I can summon the energy or the bile to do it proper justice. I’m doing so well at the moment in terms of energy levels, happiness and all-round doing-things-ness that it seems silly to waste any of it venting my fury at Allied. And it’s such a glorious sunny day outside that I don’t want to spoil it with grumpiness.

I will say, however, that yesterday I was not quite for circumspect or forgiving when they failed to turn up with my oxygen delivery for the 2nd working day in a row. Having expected it on Friday, only to have it moved to Monday (that’s a weekend with no spare O2) and then pushed back another 24-hours yesterday, I was seething. Particularly as no one from Allied deigned to call me to tell me.

The way they treat their patients/customers/fools is completely reprehensible. When I phoned to ask about my delivery at 3pm and asked if anyone had been likely to call me to tell me not to wait in for it, I got a nice, curt, “No, I don’t expect so, not at this time in the afternoon.” Cheers guys.

Do they honestly think that just because I’m transplant-listed and dependent on 24-hour oxygen I don’t have anything better to do with my time than wait around for cylinders of oxygen to let me leave my house? It’s pathetic.

Anyway, I took it upon myself to draft them a letter expressing my regretful displeasure at the standards of the service they were offering and I eagerly await their response. Not that I’m expecting them to do anything.

But I’m not going to let that dominate things today (well, not unless they fail to deliver this morning and mean that I have to scrabble to find K an alternative lift to her appointment in Northampton which I’d not have enough oxygen to run her to). Instead, I’m going to enjoy looking out at the sunshine and contemplating the next move in my rather unhurried life.

The last week or so has been quite nice, as I’ve had nothing really to do or to focus on, having not come to any conclusion as to what I’m tackling next. I’ve just knuckled down to finishing off the next CF Talk, but most of the copy for that should be done by the end of the week.

I know, though, that if I don’t pick myself a project soon, I’m going to drift off into a little no-man’s-land of indecision and boredom and get into a vicious circle of boredom/tiredness/negativity.

The best thing about the last couple of weeks has been finally working out the ins and outs of my body as it is at the moment and finding the balance between activity and rest – knowing what I can and can’t manage and how to deal with whatever exertion I do undertake without running myself into the ground. It’s been a much longer and trickier learning process that last time I was doing it back in December, but I finally feel like I’ve grasped it now. Famous last words, I know, so keep your fingers crossed.

Now I’m off to sit and watch the clock tick round till Allied turns up with today’s delivery.

Two days of lying in bed and doing NOTHING at all actually did the trick and I am now able to sit in my study and actually comtemplate work.

I say “comtemplate” because we all know (or at the very least we should all know by now) that I’m the world’s number one procrastinator and can find a way to weedle out my time sat in front of my computer better than anyone else in the whole wide, entire world.

As it happens, I have achieved a lot of “work” today by checking and sending emails.  These consist largely of sending ideas out to people for possible projects/ideas for collaborations which I’m hoping to get off the ground.

The Youth Theatre experience has taught me that being house-bound and energy-limited needn’t necessarily mean not doing anything at all, but rather that I need to find the right project and the right people to work with to make the most of what I have to offer.

So I need to find myself things to do whereby I can inspire and facilitate things for other people to pull off: kind of like a producer on a film – which is, interestingly, one of the projects I’m considering.

Like all good executives, what I need is to set up a situation where I can delegate work to the people who can handle it and can fill in for me when I’m not up to the task.  At the same time, it should leave something on my plate to make me feel a) involved and b) useful.  Being a base-touching point-of-contact is perrhaps the ideal situation.

That may all be rubbish, of course, and in fact just be providing a very useful excuse to give me a reason to avoid sitting at my desk and getting any worthwhile writing done, but then I’d hardly be doing myself justice if I wasn’t working hard to avoid working hard.

In fact, trying my best to avoid doing any work appears to be the perfect proof that I need that I must be well on the mend.  If I’m not moaning about not being able to work, then I must be doing my best to avoid doing it when I am able.

Most people would think that ironic, I know.  Lucy I’m not most people.

And Sunday’s show was spectacular – with a capital Spec.

Undaunted by a day spent running here there and everywhere trying to fit in as much technical work as possible and still have a chance to rehearse their pieces, all of the groups absolutely shone and truly showed the talents with which Suzanne and I have been working for the last 5 years.

In the whole process of seeing all of the kids and young people on stage, I even managed to forget all the things that were most bothering me about my input (or lack of it) over the last few months and actually take in and appreciate what a huge achievement this show has been not just for the groups involved, but for the whole creative team.

That’s not to say the endeavour didn’t come without it’s price – two days of being laid up in bed not able to do anything more than stumble to and from the bathroom and occasionally as far as the kettle for tea seems to be a pretty high price to pay, but then if it gets me through the rest of the week with no ill-effects then maybe it just proves that I’m learning to listen to my body.

Physically, I handled Sunday really badly. Intent on showing my support to the oldest group by being their for their rehearsal in the afternoon, I completely overlooked the fact that the scheduled break between tech and performance almost never materialises. Rather than getting an hour to take myself back home and recover/carbo-load for the evening, I instead found myself staying at the Theatre and “working” through it.

The quotation marks aren’t meant as a self-depreciating qualifier on the day’s activities, but rather an acknowledgement that for most of Sunday, I was a passenger. Here and there I lent a bit of a helping hand, but really there was nothing to be done that wasn’t a) already covered by someone else, such was the level of organisation or B) physically impossible for me to do.

Strangely, this last fact didn’t seem to perturb me as much as I expected it to. It did cross my mind a couple of times that this time last year I’d have been running all over the place and doing whatever needed doing, whereas this time I was simply sat on the sidelines watching others do the running, but I somehow managed to section it off from the rest of my thoughts.

I suppose it goes back to the train analogy I first wrote about here, and I clearly unconsciously managed to avoid getting on the train of negative thought and instead kept myself where I should be, making the most of the opportunity afforded to our wonderfully talented bunch of youngsters.

The last two days have been pretty tough, and I’ve certainly felt it on my chest, but I’m really hoping that I’ve handled it well enough that it’s not going to be a major set back. The problem with my cruddy lungs, though, is that you just never know.

But it’s another successful MKT production under my belt, another fantastic learning experience, and there is a world of possibilities still out there for me. Here’s hoping I find one to pick up soon.

It appears, having just flitted over to the CF Trust’s message boards, and by looking through my inboxes, that I’ve had people rather worried by disappearing from my blog for the last few days.   Oops.

I assure you, everything is fine.  Certainly improving.

To tell the truth (not sure why I needed to add that, since it hardly pays to lie to oneself on your own blog….) I was bumming myself out, which is why I stopped for a bit.

Far from reminding myself to Smile Through It and keep on finding the positives in the darker times of life, I found that every time I started writing a post on the blog in the last few weeks, it’s only been to say either that I feel like cr*p or that nothing’s changed for the better.  Even the times when things had changed for the better, the change seemed so infinitesimal and pathetic that it either wasn’t worth mentioning, or served only to lower my despondency about how I’ve been doing.

It’s been weird to find myself trapped in a vicious circle of negative thought, and not something I’ve been used to in life.  Most times, my dark periods inhabit the odd spell of a week or so before things conspire to kick me up the butt and show me the way to carry on.  This latest down-turn has been different, though.

I don’t know if it’s the increased fear of mortality (or, “Am I gonna kick it?” as I prefer to call it) or the impairment to my quality of life inherent in having sunshine blazing through the windows but not enough energy to leave the apartment and enjoy it, but I’ve been lost in a mire of negativity for the last few weeks from which I seemed to have lost the map that usually provides my guide.

Sure, I’ve had good moments – I’ve managed to share Easter with the families around me, I’ve shared a little laughter with friends, I’ve even managed a trip to Borders (hurrah!), but there has been an overwhelming sense of good, old-fashioned, Dickensian melancholy hanging over me throughout.

It’s not that I entirely lost perspective on the whole thing: last week I was sitting a the funeral of a young girl who’s been an almost constant fixture of my working life for the last six years, since she’s been coming to the MK Youth Theatre sessions since their inception.  Sitting in the packed church among many young people experiencing their first distressing taste of grief, I realised that the very day I hit my lowest point – Sunday 1st April, as documented here previously – her Mum, Dad, younger brother and Grandparents were waking up to a new world without their beloved daughter.  How could I complain about pain in my life when held up against the pain of a parent outliving their child?

I’ve still appreciated each day I’ve been given, but it sticks in my proverbial craw (I’ve never really known what that means, but it seems to fit here, anyway…) that “making the most of it” is limited to sitting in the chair at the bay window using the bright sunlight to read by, as opposed the to dim interior light all through winter.

Finally, though, after weeks of dragging myself through the rough parts of every day and persevering in ways I wasn’t even sure I was capable of, I seem to have made it out the other side.

That’s not to say things are all bright and rosy, but I have at least got the energy to pop over to my ‘rents and enjoy the fresh air and sunshine if I want to, or to sit in the study and surf the ‘net a while without completely exhausting myself and having to collapse into bed.

I’m able finally to contemplate looking at the next issue of CF Talk, which has been sitting unattended on my desk for nearly 2 months now and is in dire need of completion.  I’m able to think about the other writing projects I was looking at before and see if I can rekindle the spark that was there before.  I’m able to focus my mind on something other than how my chest is feeling or whether or not I should stay in bed rather than move to the sofa.

I’ve one more negativity-hurdle to overcome, and that will be over after the weekend.

This Sunday sees the Activ8 Youth Theatre show at MKT take place, an event which was to have been my first opportunity to get stuck in to directing a short piece for the Youth Theatre and to benefit the CF Trust.  If I’m honest, I saw it as something of a swansong with them, acknowledging as I have to the likelihood that my involvement is being compelled by my chest to end.

Rather than a happy ending, though, it’s going to be an extremely tough one to get through.  Not just physically, although I can’t pretend that that’s not going to be a challenge in itself,  but because I’ve ended up having almost nothing to do with the finished product.  Three weeks’ of rehearsal in a 12 week term doesn’t amount to a contribution, in my mind, and the work I had hoped to see up on the stage is now more likely to bring me down than uplift me.

I wanted so much to make this something to remember – an event that showed the Theatre’s support not just for the CF Trust, but for the whole Youth Theatre, and a true showcase of the talent which has been nurtured through Activ8 over the last half a decade.  And don’t get me wrong – it is still very much all of those things.

But it doesn’t feel like it’s anything to do with me.  I feel like a passenger, an outsider, something akin to a “consultant” who’s seen parts of the process leading up to performance and had a little input, but not someone who forms part of the “team” whose talents are being showcased.

I know that people will shout me down and will be quick to try to dissuade all of my fears and make me feel a part of it, but I can’t get passed the fact that I’ve not been there for them or with them for pretty much the entire term.  This is their show and their showcase, and it’s nothing to do with me any more.  That saddens me, and it’s going to be hard, but nothing will stop me being their to support them.

I am trying to keep my air of positivity and move forward from here – and I know I will continue to progress – but I also know that this weekend is going to be a really tough one to get through.

Thanks to everyone for your good vibes, your love and prayers over the last few weeks.  They really do make a difference, and they have helped me enormously.  I shall endeavour to keep up with my more regular out-put of the past, as I will endeavour to keep myself looking up and not down, forward and not back.

Keep on truckin’.