Archives: Antibiotics

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 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.

After almost a full 24 hours tucked away in bed sleeping off the after-effects of our 3am bedtime from Tuesday, I was back up to Oxford today to finish off my IV’s and see how the exercise program appears to be working.

First of all, though, I had the morning to spend with one of my best friends who I’ve not seen for an age, who came around with her shears to attack my unruly barnet, which she did with considerable gusto, even tipping a small vat of bleach onto my head for 45 minutes.

To be honest I’m not entirely sure I like the result, but the thing with Lea’s haircuts is that in all the time she’s been doing my hair (which is about 6 years and counting now), I’ve never actually liked the cut or colour for the first 24 hours. I think it’s because it’s nearly always pretty drastic, so I’m not used to the sight that greets me in the mirror. But without fail a couple of days after I’ve had it done, I always LOVE it. I’m odd like that, but there you go.

We’ve kind of got used to each other now – she’ll finish and stand back excited and happy, cooing and purring over her handiwork and I’ll stare at myself in the mirror and um and aahhh over it for a while and generally be unenthusiastic. Then in a couple of days’ time I’ll do my hair in the morning and be straight on the phone to her to tell her how much I love it. Legend, she is.

What’s more, she’s one of those fantastic friends who you can go for months without seeing but pick up from exactly where you left off as soon as you’re back together again. We had such a great time this morning, it really helped lift any of the remaining fug from Tuesday night.

Oxford was good again. With the steroids being tailed off – reduced by a third in the last week, and with a noticeable energy reduction – I was expecting to see a pretty big difference in the workout session with Lou the physio today. So I was pleasantly surprised again (and pleasantly surprised to be pleasantly surprised again) to get through an 8-minute step-up workout with her and see my sats stay in the optimal/safe 90% range during exercise and rising back to 93/94% at rest afterwards.

The next couple of weeks is going to be the real test of the plan’s long-term prospects as I drop the IV’s and begin to slowly ween myself off of the steroids. If I can keep my appetite up and give myself enough fuel to run through the programs I’ve got, then potentially I can keep my chest feeling stronger and clearer for longer and avoid the usual post-IV dip.

The motivation is still there, even if the energy levels are more variable. It’s just a case of trying to find the right moment in each day to get the most out of my chest without leaving me exhausted for the rest of the day. It’s another of those slow learning processes, but at least it’s got very positive benefits to aim for and a real sense of achievement to top it off if it works.

The end-of-IV checks included looking at my lung function which has stayed at a fairly stable 0.8/1.4, which is good if unremarkable. Mind you, I’ve not been over 0.8 for more than a year now, I think, so it’s probably safe to say that’s pretty much my ceiling now, so as long as I’m staying there and not dropping, we know things are going OK.

Although the exercise program is unlikely to improve my base lung function, the hope is that it will help out with the oxygen flow round my body and help reduce the breathlessness. We’ll have to wait and see if the theory holds true, but for now, it’s time to plough onwards.

PS – thank you all for your wonderful comments and messages of support over the last couple of days, they really do make a massive difference in picking myself up and keeping on. And K wanted me to add big thanks to everyone for her birthday wishes to! So you all rock, muchly! xx

I’m off to a flying start.  Well, I suppose it’s more of a stepping start, really, but isn’t there an old Chinese saying, “Every great journey begins with a single step?” and I did, like, at least 30 and a half steps today, so I must be really well started on my great journey, even if I do have to go back and start again because I forgot my GPS and SatNav.

I woke up this morning with both my thighs telling me in great detail how they’d been brought rather rudely out of retirement yesterday without any prior warning.  I suggested back to them that they might want to get used to it because there was a lot more where that came from and oddly enough they just laughed at me.  Even my legs don’t have any faith in me.

I didn’t let it deter me, though.  I resolutely soldiered on with my day – I did my morning IV’s, I ate my breakfast, I sat on the sofa and read a little and I sat at the computer and surfed a little.  Extremely strenuous, clearly.  I also slipped back to bed to read for a bit and then do some physio and then I had some lunch.  They were still moaning, mind.

In fact, I think my quads had only just stopped giggling and been lulled into a nicely false sense of security when I took the bull by the horns (yep, the same one as yesterday) and marched to the bedroom to pull out my little yellow step from under the bed.

I think I may have to work on the phrasing around my exercise equipment, or come up with a cunning euphemism for it because, let’s face it, “little yellow step” is a bit pathetic isn’t it?  Maybe I’ll Christen it Goliath.

So I dragged Goliath from under the bed and I set myself up in the door frame to the living room – facing a bemused K sat at her desk “working” while trying to keep a straight face, clearly – and set off into my routine of step-ups.

10 and a bit minutes later I’d completed my prescribed 6 minutes, with 30 second breaks between rounds, and was feeling it, too, but happily hadn’t keeled over or gone dizzy.  I quickly knocked back a glass of milk (fluid replacement AND calorie booster rolled into one, easy, cow-born package) and hoped that foot and mouth isn’t a problem in pasteurized produce.

Goliath was kicked (sorry, hauled) to one side to wait for his return tomorrow and I sat, slightly sweaty, on the sofa with a smug look on my face with K muttering approval from behind her lap-top in the vaguely-guilty-sounding voice of someone who knows they ought to be doing something similar, too.   (Exercise-wise, that is, not sitting smugly on the sofa.)

Hurrah! then, one day down and I can feel the habit forming already.  Well, kind of.  OK, maybe it’s not the habit I feel so much as a vaguely uncomfortable stretching of the quads, but I still did it – and did it unprompted, too.

I’m actually now so scared of people with large sticks (see comments on previous post) that I think I’ve got motivation enough to last me till winter.

So I’m now mid-way through my course of IV’s (provided I’m only on for 2 weeks, which is always a big “if”) and I was back up to Oxford today for a check on how things are going, some mid-point bloods and an exercise session.

As I mentioned in my post about my annual review here, the docs think that if I can get myself doing some exercise and building some of the muscle mass I’ve lost over the last few months, I’ll stand a much better chance of keeping my lungs ticking over for a while longer than they may first have predicted.

Apart from the exercise (which I’ll come to in a bit), the most amazing thing to come out of today were my oxygen saturation levels – the amount of O2 that gets transferred into the blood stream to be carried around the oxygen.  I know I’ve been feeling brighter and fitter over the last few days, but nothing prepared me for the physio clipping the monitor to my finger this afternoon.

Normal sats levels run between 99-100% and back when I was off O2 and doing well a couple of years ago – and for a good while before then – I used to run fairly steadily about 96-97%.  Recently, even with my constant flow of 2 litres of oxygen per minute being shoved up my nose, I’ve usually topped out at 89%.  That’s pretty low.  OK , very low.

Imagine my surprise, then (I seem to say that a lot on here, so I guess all you guys who stay with me and continue to read this must have a pretty good imagination by now) when I perched on the bed on the ward today and saw my sats hit 94% at rest for the first time in well over 4 months.

I was totally gobsmacked.  I have to admit it was totally beyond my wildest dreams that I could or would recover the function that I’d lost, having convinced myself I’d waved  it goodbye for this set of billows.  Even my physio seemed a little startled by it, but she said she didn’t see why we couldn’t maintain or even improve them with the right exercise programme.

Obviously, it’s not exactly Olympic standard – I don’t even need any gym equipment, unless you count the beautiful, girly-pink dumbells they had me using for my bicep curls – but it’s something which gets my heart-rate going and will hopefully strengthen some of my core muscle groups and increase my general exercise tolerance.

The programme consists of a “cardio” set (in quotation marks as it’s not exactly pushing my maximum heart-rate) to build endurance and “weights” set (in quotation marks because all but one of the exercises actually uses body weight and nothing more) to strengthen my arms and legs, the areas which take the biggest hit during any period of inactivity.

The endurance set is a very simple 5-6 minutes of step-ups onto a low stair, broken up into 1 minute reps with 30 seconds recovery in between.  The aim is to increase the time by 30 seconds every couple of days until I reach a comfortable but taxing plateau, repeating the set every day.

The strengthening set consists of several different extension exercises, including leg-lifts, quad stretches, hip movement and arm/shoulder lifts. The idea is to do 3 sets of 8-10 reps of each of the exercises three times a week – so Monday, Wednesday and Friday, I should think.

I’m actually really psyched about being presented with something that I can do to help myself.  For so long now I’ve felt like a passenger on this ride.  I know that doing nebs and physio everyday is a big part of fighting off the avalanche of attackers busying themselves in my chest, but this finally feels like I have a chance to do something to take the bull by the horns and drag myself back up the slope.  (And on the way up I’ll find some more weird metaphors to mix, too).

It remains to be seen just how good I am at staying motivated when things get tough and I’m tired, aching and stressed out, but everything has to start somewhere, so it might as well be on a high.  If I can just help to turn this into a habit, then maybe it’ll become as second nature to me as nebs and physio are at the moment.

Needless to say, I’ll be doing my best to use the blog as an exercise diary, so I can be applauded or chided as necessary to spur me on.

(PS – for the record, my lung function mid-IV’s is at 0.8/1.5 which is actually better than it was at the END of my previous set of IV’s)

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.

One of the joys of finally being off IVs is not having the alarm blare at 8 o’clock every morning to get you up and out of bed to do your morning dose.  Annoyingly, my body seems to have seen fit to re-set it’s internal clock to keep raising me from my slumber sometime near or just after 8am anyway, as if I’ll miss out on something important if I don’t.  Regardless, it’s still nice not to be woken by an alarm, I suppose.

I had the BBC round today to do an interview for Look East, the local news bulletin for the Anglia region.  It was only a 2-man job, nothing big, with a reporter and a cameraman and took less than an hour from top to tail.

Interestingly, I didn’t feel even a touch of nerves today, which I normally get before any of the interviews I do, so I am forced to assume that my brain and nerve-ometer have come to the conclusion that once you’ve done live Radio 4, taped local news is nothing to be bothered about.

Not that I’m complaining at my head’s somewhat pompous stance – it makes interviews a whole lot easier and less tongue-twisty if you’re not feeling the nerves beforehand.  And in fact today I felt I gave on of the best interviews I’ve done – I covered all the bases clearly and succinctly and gave them lots of material to cut around, depending on what angle they wanted to take.

I was even pretty pleased with the final version which went out on in the 6.30pm programme tonight – it managed to put everything across well and didn’t rely too heavily on the kind of news-package cliche  coverage that usually gets shot for PWCF, although we did have to have the inevitable nebuliser shot.

The rest of the day has been spent trying to chill out and rest up in the hope of making it to Birmingham for the Live Life Then Give Life event in Victoria Square in the afternoon.  It’s frustrating not to know whether I’m going to be able to make it or not yet, but I can’t commit to anything when I have no idea how I’m going to feel from one morning to the next.

Most of the afternoon has been fine, although this evening my chest is feeling a bit tight and grumpy, so it’s anyone’s guess how I’ll be in the morning.  I’m hoping that it’s just a bit of tiredness creeping in and that once Neve takes over the leg-work of breathing for the night, I’ll be set for a trip out tomorrow.  We’ll have to wait and see.

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.