Archives: Family

My days seem to get more and more roller-coaster-y by the week.

Take today:

Woke up this morning and no sooner had I taken Neve off and got out of bed than I was struggling for breath and feeling distinctly uncomfortable, not helped by a significant amount of back pain, a repercussion I’m sure of sleeping in a slightly more propped up position last night.

With regards to my sleeping habits, it seems I can’t win.  Going to bed breathless, as I did last night, demands a more upright sleeping position, or at least having my head and chest raised a little further than I would otherwise choose to sleep.  While this eases the breathlessness and causes less problems with waking up coughing in the night, it plays havoc with my back, which I think ends up slightly unnaturally curved.  But I digress.

I managed to struggle through some breakfast, which I have to admit was a bit of a chore, and I laboured my way through sorting out and taking my nebs before taking myself back to bed to read, where I felt most comfortable, both for my chest and my back.

At 11.30am, I spoke to the lovely journalist feature writer from the Mirror for about 45 minutes and far from ending up breathless, I seemed to get stronger as the interview went on – completely bizarre and totally the wrong way round.

It was a great interview, covering a lot of my life and progression over the last few years up to talking about the present day and the Mirror’s One in a Million campaign.  It was funny talking to a journalist and constantly second-guessing how she was going to write it up; I was very wary of not saying something which she could infer to mean something else.

Asking me what I thought about people who hadn’t signed up, I was trying to explain how frustrating it is that so many people are in favour of donation without actually signing the register, but without saying it’s frustrating, as the last thing I want is to be portrayed as accusing the country of not caring about organ donation or other people’s lives.  She asked me if I felt “let down” by those people and I had to hastily back-track over what I’d said to make sure that wasn’t the impression I was giving.

I’d never say I felt let down by people not signing the register, but it does seem like such a waste that there are people who’s organs could be used which aren’t simply because they’ve never taken that step to make people aware of their wishes.

That said, there’s an awful lot more to increasing organ donation than merely signing up more people to the donor register.  The Sunday Times ran a front page piece talking about the Opt-Out system yesterday, which on paper is a great idea for increasing the number of organs donated.  But in practice, it still requires a huge investment in the NHS infrastructure and we still need to look into the education and training of NHS staff to make sure that the system is optimised.  Simply changing the way in which consent is acquired won’t be enough.

Back from my rather lengthy segue, I found myself feeling much brighter after the interview and managed physio and nebs before heading to bed for a bit more rest and reading.

By mid-afternoon, I had recovered sufficiently to get out of the house for half an hour to run and errand with K, which was a really nice change of scene.  Although I was tired when I got back, it was nice to get out and enjoy a little bit of the nice weather.

This evening, things have swung back a little the other way.  In preparation for the photographer from the Mirror coming round tomorrow, I decided to have a shower to wash my hair and boy was that a bad idea.

The problem with a shower over a bath is that it’s very hard to wear oxygen in the shower, with wires hanging all over the place and water running over your face, and even harder to wash your hair with specs over your ears, so I tend not to wear it.  Tonight’s shower was, I think, one of the single most uncomfortable breathing experiences I’ve ever had.

It’s not that I was dramatically out of breath – not panting or gasping for air – but more that I just couldn’t seem to get enough air into my lungs to keep me going.  The whole thing from start to finish probably took me about 3 minutes and it was horrible.  By the time I finished I had to climb out and sit down in the bathroom for a good 10 minutes to recover myself.  Not nice.

Still, now I’m fresh and ready for the snapping man and I have very little to do between now and then, so I can try to make myself comfortable and chill out a little for the evening.  Hopefully my breathlessness will be under control tonight, so I can sleep in a more back-friendly position, but we’ll have to wait and see what my chest roller-coaster throws up for me tonight.

The funny thing about not doing very much is that when things do happen in your day, it makes them seem like a much bigger deal than perhaps they would seem on another day.

On the other hand, the ups and downs are coming in so thick and fast at the moment that I don’t really know what to do with myself at some points. Most weeks seem to end with an interesting good news/bad news summary for the week, although I try not to dwell on that too much lest the knowledge that the week contained more of the latter than the former start to drag me down again.

Then you get days like today, when the good news/bad news cycle suddenly notches up a gear and starts flying along quicker than a steroid-powered rider in the Tour de France.

I woke up this morning just before 9am, a good average morning wake up time, feeling pretty good. After doing my nebs and physio, I’d noticeably slowed down a good chunk and was feeling a distinct lack of energy. Immediately, my head starts to worry about how much of a struggle today is going to be.

Luckily for me, I didn’t have that much time to dwell on my thoughts because for three quarters of an hour between 11am and 11.45am, the phone didn’t stop ringing. If you want a clearer demonstration of a good news/bad news day, you’ll have to search long and hard. Although it was really bad news/good news. The phone calls went as follows:

– Lisa, my nurse from the Churchill in Oxford calls and tells me that the result from my Glucose Tolerance test in my annual review was high, a possible indicator of the beginning of CF-related diabetes (CFRD), more on which later, but suffice to say it didn’t put a smile on my face. She’s going to try to find me a blood sugar testing kit for me to monitor my sugars for a couple of weeks before my next clinic visit on 2nd August to see what’s going on.

– Mum phones. Tell her why I’m not sounding over-joyed. She tells me not to worry about the GTT. Immediately, it makes me worry. Mum only tells you not to worry when there’s something to worry about (or at least only says it in that tone of voice where she doesn’t sound entirely convinced there’s nothing to worry about). Tells me my Grandpa is up for the weekend if I want to come over and I’m left to ponder if I’ll have the energy to make a trip to Mum and Dad’s to see him.

– Emma calls to tell me that the Daily Mirror want to run a feature on me and Robyn, who is also currently waiting for a double lung transplant and also has CF, and is currently the face of National Transplant Week. She asks if I’d be interested. I know it’s not really a question because she knows how much of a media monkey I am. She has to check with Robyn, too, but will get back to me.

– Emma calls again, Robyn’s on board, so she gives me the writer’s details.

– I phone the Daily Mirror writer and talk to her a bit about donation and things. The spread will form part of their One in a Million campaign, through which they’re aiming to sign up a million potential organ donors. We arrange a proper telephone interview for Monday morning and I pass her Robyn’s details.

– K phones from work after I text her about the Mirror piece. She’s excited (she tends to be more excited than me about pretty much everything, for which she thinks I’m rubbish) but can’t talk for long, so I don’t tell her about the GTT results.

The thing is, I don’t really know what to feel about the possibility of CFRD. What confuses me is that the perception of people being diagnosed with diabetes is that a massive blow and in some ways the end of life as they know it. Just think how many “Oh God, I’ve got diabetes” stories you see in medical dramas and other TV shows. Just this week, K and I watched an episode of Brothers and Sisters, the new Channel 4 show, in which the family’s life crumbles around a daughter’s diabetes diagnosis.

But at the same time, I know plenty of people – many of my friends – who have diabetes and CFRD and it makes no apparent difference to their lives. There are countless stories of people doing all sorts of things through diabetes – take Steve Redgrave, who won an Olympic medal while dealing with it.

So it seems like it shouldn’t be that big a deal, but at the same time I think my mind has been programmed into thinking it’s a nightmare.

I certainly don’t relish the thought of yet more drugs and treatments and things to think about during the day, but as Lisa said on the phone today, it may explain why recovery times seem to be longer at the moment. Perhaps getting my blood sugars under control – if indeed they are out of control, which we still don’t know for sure – will open the door to a more full-on recovery and bring back other little aspects of life I’d given up on for the time being, like popping out to the shops.

I suppose the biggest problem with having not very much to do all day is that it gives you a lot of time to dwell – to think on things for far too long, when in an otherwise active life, you’d have busied yourself with something that takes your mind off it. When you feel so short of energy that you can’t engage with anything, your mind is free to take itself off to all sorts of places you’d rather it didn’t go.

So I’m deciding for myself tonight that I will go to bed not focusing on the “maybes” of dubious GTT results, and instead relish the the thought of FINALLY getting to maych Emily by hitting the National Press. OK, I’m a long way behind her in media stardom for now, but I’ve got much more in my tank yet. Just you watch…

So it turned out that my chest decided not to try any last minute histrionics and I did make it up to Birmingham today.

I’m sure there will be much amusing cross-bloggage between myself, Emily and Emma on the subject, but since I appear to have got here first, I’ll be popping my smug face on. Or possibly reflecting on the fact that they clearly have better things to do with their Saturday nights than sit in front of their computer detailing their day. Ho hum.

Today saw the beginning of National Transplant Week, which runs until next Saturday, and to mark the occasion the Live Life Then Give Life team assembled in Victoria Square in Birmingham to create the world’s biggest Loveheart (you know, those little hard sweets with “Date me” or “Sexy” written in the middle).

The idea was to create a 1 metre wide version, which, when finally calculated, required a massive 70kg of icing, which all had to be rolled out, dyed, plastered together in a neat round shape, then have the heart-shape and letters spelling out the organ donation line phone number placed on top.

Due to the hugely limited reserves of energy I have now, however, most of the fun of the day was off-limits to me, with my arrival timed to coincide with the completion of the finished loveheart around 3pm, when we hoped to have some press along to mark the occasion.

Mum and Dad drove over and collected K and me just after 1pm and we headed up the M1 to Birmingham in really good time, car loaded down with my newly acquired wheelchair, plenty of spare oxygen, a snack-box of energy-boosters and spare bits and pieces like paracetamol, which I’ve found immensely useful in recent weeks for calming hyper-active chest flaring moments.

I have to confess that I was pretty nervous going out of the house today. Things can change so rapidly from moment to moment with my chest at the moment that the prospect of traveling quite so far from the relative comfort and safety of home, where my bed and Neve are always to hand, concerned me. The prospect of getting into difficulties in a car on the motorway filled me with a kind of nervousness I’ve not experienced before and it really threw me off.

That said, it was a really wonderful afternoon – everyone there was so fun and friendly. I saw a few faces I’d met previously at Laughter for Life and met a few people who I’ve only had contact with via email and message boards up to now.

It was fantastic to be out in the open air and having some fun with people, compared to my usual life at the moment of sitting around at home doing hardly anything at all. The daily grind of nebs, physio, more nebs, resting, nebbing, physioing and on and on in a loop is brought into focus by a break from routine like today.

My chest behaved admirably. Once we got home it gave only the mildest of complaints, letting me know that it had done quite enough for the day, thank you very much, but not ranting and raving about it as it sometimes deems necessary.

I’ve been pretty spectacularly tired all evening, but have forced myself to stay awake so I get a good night’s sleep tonight, which I’m now assured of, so I’m going to whisk myself off to hit the hay and catch up on other things tomorrow.

Thanks to everyone who helped out today, and to everyone who popped down to say hello. We made an odd sight in the centre of Birmingham, standing over a giant sweet in various random states of hilarity and occasional fits of giggles, but we made contact with a lot of people and passed on the message of organ donation, which is what this week (and our campaign) is all about.

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.

With little fanfare, and no candles, I quietly passed into my 26th year yesterday.

Whether emailing all of your friends, posting a Myspace bulletin and blog piece count as “quiet” is perhaps a debate for another day, as I like to think it was peaceful and respectful.

My little idea of raising a hundred or so pounds for the Trust by asking for donations in place of gifts has blown me away ever so slightly. At last check, justgiving.com/oli25 was running at a massive £320, with pledges of more to come from a few corners.

It has truly over-whelmed me the number of people who have donated – especially people who I know wouldn’t have been buying me anything anyway. It means so much to me that they donated something anyway, I’ve been really touched by everyone’s response.

Thanks also to everyone who sent me birthday messages and good wishes.

I had a great day, being spoiled rotten by K all day long, with breakfast specially prepared fresh from the shop, all fresh and delicious, plus a spectacular act of rule-breaking in the most fantastic fashion including a furry orange book about the making of Avenue Q, the puppet musical I’ve become slightly obsessed with.

For the first time in a really long time, I’ve got new DVDs to add to my collection, including a few I’ve wanted to see for a really long time and a classic I really should have seen but have never got around to.

Birthdays are amazing things. They serve to remind you of all the joy you have in your life, all the people who mean something to you and to whom you mean something in return.

So many people complain so much about reaching another birthday – I guess fearful of the on-coming of old age. I don’t know where it comes from, other than an age-old, in-built fear of getting closer to losing something, whether it be your faculties or your life.

It’s always struck me, though, that people look at birthdays the wrong way. Perhaps it’s because I’ve been forced into a position where every passing year counts as a true blessing, but I don’t understand why people choose to fear their birthdays rather than embrace them.

Every year of our lives brings new adventures. It brings new experiences, new people, new wonders we know little of when we celebrate the passing of another 12 months. Every day that goes by we learn something new, we grow as a person and we extend our life beyond what it was the day before.

Surely that’s an amazing thing – so why don’t people see it and appreciate it for what it is? Is it that every year that passes we slip into more of a groove of comfort wherein everything blurs together into one homogenous experience? Do we learn over time an inability to distinguish the wood from the proverbial trees?

The saddest thing in life is when a person stops seeing the beauty that surrounds them and the experiences they are open to. Childhood is seen as the happiest time of our lives, because that’s when we take in the wonder of the world and see things for the first time – the time when we don’t think we’ve seen it all before and are eager to take it all in.

Adulthood shouldn’t be about getting bored of the same old things around us, it should be a time when we can use our years of experience and perspective to take hold of the things in life that really matter and put aside the thoughts of the things that don’t.

We should take each passing year as an opportunity to do the things we want to do, go the places we want to go, see the things we want to see, but more than anything, to not let the world blinker us to it’s beauty and ever-changing wonder simply because it’s become familiar to us.

Tomorrow morning, I want you to look out of your window when you draw back your curtains and really notice the things you can see outside it. If it’s dull and grey and there’s rain falling down, don’t let your heart sink, but turn your thoughts to the amazing way the falling water changes the way you see the street, the way the light falls differently. Take note of the things you see everyday, but look closer and find a detail you’ve not seen before.

And when you go downstairs and you greet your loved one(s), take a moment to appreciate what they bring to your life. Take a moment to think about what they’ve brought into your world that’s made you who you are. As Alfred Lord Tennyson once wrote,

“I am part of all that I have met.”

Happily, the jinx doesn’t seem to have lasted too long, which is definitely a good thing.  After a bit of a slow down at the end of last week and a weekend spent doing as little as possible, things seem to be back to where they were before I decided to blog-big about my projects and plans.

From now on I intend to only highlight imminent events on here, and to talk about everything else only once it’s safely behind me.  Which is odd, because I really don’t believe in jinxes/superstition.  As my brother delights in telling me, it’s unlucky to be superstitious.

So, the last couple of days have seen me finally bite the proverbial bullet and really get my head into CF Talk to get it swept off to the designers.  They do a fantastic job, but do insist on having FINAL copy before going to work on it, as they’ve found to their cost in the past that if people are still chopping and changing while they work then a certain turn or phrase or clever image in the text that spurs them on to create a funky look for the page can disappear and leave the reader bemused as to where the page-layout idea came from and possibly whether the designers were smoking something while they worked.

And I know for a fact that Tin Racer is a no-smoking facility.

The trouble with having to provide them with final-final copy is that I’m terrible for making lots and lots of little tweaks to the text for the CF Talk copy.  Often, the copy we receive is too long for the format and needs to be cut down, but I’m always anxious that while I may be cutting and re-jigging the article, I am never rewriting it.  Because the whole idea of the magazine is that it is written by pwcf for pwcf, it’s really important to me to keep the original author’s voice on their work, and not edit it into one homogenous style throughout the mag.

What this means is that while I’m editing, I’m constantly making changes and adjustments to the articles to make sure I’m keeping the thrust of what’s been written, as well as the original voice, whilst shaping it into an article that will fit within the space constraints imposed by our format and style.

It’s not easy and it’s one of the jobs that I always find myself trying to delay.  This time it’s been even tougher as I had a long spell out of the editor’s chair going through my recent rough patch, which meant that I had to come back to look at all the articles again, having completely lost the flow I was in before I had to down tools and sort myself out.

Happily, though (and I do enjoy seeing that word twice in the same blog entry), I have now managed to sign off on over 3/4 of the copy for the new issue and turn it over to the guys at Tin Racer.  All I have left to do is all the little mop-up pieces which come last, like the Editorial for the issue, the contents page and the competition page.

It’s been a long time coming, but hopefully we’ll carry a bit of momentum into the next issue and get it out quite quickly this time round.

Obviously, I’m looking at taking a long weekend off all work-related bits and pieces this weekend to make the most of my 25th Birthday, for which I have so far studiously avoided planning anything.  It’s a little sad, I have to say, to not be able to celebrate things properly, but I’m actually so glad to be here to see it and to be able to share it with all my family and friends, whether I get to see them or not, that it’s not got me down as much as one might expect it to.

I’ll be sure to chart progress of the other work I do manage to achieve this week on here once I’ve got there, but I’ll hold back from jumping the gun and shouting about my plans for the week for now.  I’ve learned my lesson.

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, all in all, a pretty good bank holiday.

I was feeling a little run down at the end of the week – not sure why as I’m not sure I’d been massively active – so Saturday was spent very much in chill out mode not doing anything beyond reading the paper and sitting on the sofa.

Sunday I went over to Mum and Dad’s for the afternoon to watch the end of the Championship footie season, willing on the Saints to their playoff place, which they secured thanks to a handy 4-1 win over Southend (was there ever any doubt…?), after which we had a gorgeous roast, shared with my bro and his other half. It was good to catch up with them, and nice to see them again so soon after the last time, since I’ve got rather used to not seeing my bro for pretty extended periods of time.

Today’s been a bit harder, largely because yesterday took it’s toll. My Godson came up to visit with his parents, my mum having laid on her usual lunchtime spread for guests, and K and I popped over for food and games.

Sadly, my chest only lasted for about an hour after the meal before deciding that sitting on the floor playing loud, shouty games was not in it’s order of the day, so set about making me feel decidedly uncomfortable with a dedication that really should be admired.

What really hit me today, though, is how some people choose to sympathise with you when you feel unwell. My problem at the moment is that when I get tired (which I do, very easily), I very much lose my ability to put a happy face on things.

I’ve thrived – as some of you will know first hand only too well – on always keeping not just a stiff-upper-lip, but one that’s ever so slightly curled up at the edges; a mirthfull demeanor no matter the inner “turmoil”. Now, though, my reserves are depleted to the extent that any moment of flagging in the day means that the positive spin and happy vibes are the first energy-drainers to be lost.

What I think that means to people on the “outside” is that for the first time they are seeing me in a different light – I guess for the first time I look like I’m suffering. And boy do I hate it – there’s nothing worse in my eyes than other people seeing how hard things can be.

I’ve no problem with telling people how hard things can be, as long as I can do it with a smile on my face and do my best to laugh it off in the process, but when people can SEE how much it sucks, that bums me out like nothing else and there’s nothing I can do about it, because I don’t have the energy to fake it.

What’s more, some people seem to think it helpful to show/tell me how much they appreciate the shiteness of the situation. I know it’s good-natured and well-intentioned, but when people tell you that they know it must be horrible, or say “it must be really shit right now” – it really doesn’t help at all.

I’m well aware of just how completely, head-screwingly, eye-gougingly, heart-breakingly pathetic my life can be on my bad days at the moment – I don’t need someone to tell me it must be horrible. It is. I live it.

I know, too, that much of my reaction is just tiredness and not being able to rationalise the thought process, but it just seems like a spin-off of the affected sympathy you get where people try to explain that they know how you feel because they once had a cold so bad they couldn’t breathe through their nose at all, and that the doctor thought that if it carried on any longer they might need ANTI-BIOTICS!

I know it’s well intentioned, and I know people can feel awkward and that they have to say something to show their support, but please, next time you see me, don’t tell me how much you appreciate how hard my life is: just give me a hug.

The funny thing is, I know that the opposite extreme annoys me just as much: the people who try to belittle what I’m going through by comparing it to other people’s problems. The whole, “everyone has something to worry about,” line.

Again, I appreciate the attention, but actually, frankly, in a game of “How cruddy is living in your world” Top Trumps, I think I would probably take some beating. So telling me that you’ve got a friend who’s got an in-growing toenail AND has to walk the dog twice a day AND has to look after a child alll the while needing to make sure they can Sky+ the football doesn’t do a whole lot for evening out my perspective on things.

Like I said before, I know that much of this is tiredness, but the fact is that I’m a tired old grouch a lot of the time now, so I guess I’m thinking of this as a primer for how not to make me throw things at you the next time we talk. Or at least as a warning to duck once you’ve finished speaking.

I guess the whole thing comes down to the simple things in life. If in doubt, hug it out.

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.

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’.