Archives: Antibiotics

Ups and downs are par for the course in life, and we all learn to live with our own particular roller-coasters and merry-go-rounds.

Right now, I’m in a pretty substantial dip, enclosed as I am in my hospital room with what appears to be very little day-to-day improvement or sign of change.

I’ve been in just under a week now and, while I do feel better than I did when I was admitted, I don’t feel like I’m somewhere the docs might describe as “better”.

What’s become worse over the last few days is my intense focus on my transplant and when it’s going to come.

For the last 20-odd months, I’ve lived with the ever-present likelihood of that crucial phone call at any time of the day or night, but it’s always been something which I’ve lived with in the background and not paid much heed to.

Now things are looking less rosey, and with landmark moments being missed and life being put on hold, the urgency has been brought to the fore and the once-in-a-while thoughts have turned to a daily dwelling.

What upsets me most about things at the moment, though, is how much this borderline obsession is changing me as a person.

Not only do I feel more negative than I have for a while – finding myself struggling to see the fun side of life or consider anything that might be conceived as residing in the “future” – but I’ve also developed what can only be described as a jealousy towards others.

One of my closest “net-friends”, with whom i’ve shared many of the bizarre, amusing, surreal and downright scary moments of the transplant process, has been granted the gift of life which had so long eluded her.

But rather than finding myself eagerly awaiting news of the new joys she’s discovering every day, I can’t bring myself to catch up on things because I am constantly hit by a wave of “what about me” feelings.

I don’t recognise this as a trait in myself – it’s just not me. I’m not a jealous person and i’ve always delighted in the triumphs of my friends, family and all those around me.

So why the change now? What is it about my life at the moment that has brought out parts of myself that I never knew I had?

They say you learn a lot about yourself in adversity and “they” are often right. But how much of my current mood and outlooked is a deep-rooted personality defect that’s been dormant for years and how much is it merely distorted through the prism of life-threatening illness and the hope of salvation?

I honestly don’t believe I’ve changed as a person, nor do I think that my current health-hurdles are insurmountable. Similarly, I don’t expect my run of negative thinking to go on forever, but see it merely as a darker period brought on by hospitalisation – an effect I’m all too aware of from past admissions (both recent and historic).

The trouble with lung damage and infection is that it’s incredibly hard to know when you can reasonably expect to regain your lost lung function after a bout of infection and when you have to accept that you’ve waved goodbye to the portion of lung for good.

Clearly, the lower the function in the first place, the less there is room for movement either way. So when lung function drops, it’s hard to keep the fatalistic wolf from the door – both physically and mentally.

I’m not giving up yet, though. I’ve been through tough times before and although I’ve never considered myself quite as close to kicking it as I have this time, I’m confident that I can get past it.

This is largely thanks to my ever honest and sensitive team at Oxford who know what goes through my head and aren’t afraid to tackle the issues – and fears – as they come up.

I may not be able to bring myself to stay fully abreast of a good friend’s post-transplant progress, but I can still remind myself how often things looked bleak before the big day arrived.

Everything comes to he who waits, and while my new lungs may be the longest-settling pint of Guiness in history, I’m sure I’ll soon be frustrating someone in my position with my tales of new wonder in my life.

Amid all the hullabaloo (gotta love that word – never thought I’d use it here!) surrounding L4L, I have actually been looking after myself, too, you’ll be pleased to hear.

In fact, I was booked for a check-up at clinic today.  I popped along, with K in tow for waiting-room entertainment, and saw all the necessaaries, who all seemed to be buzzing about my appearance on Radio 4 and/or the upcoming gig.  It was almost like a taste of celebrity…

But most importantly, things went really well.  Off to a cracking start when I weighted in at 52.6kg – the heaviest I think I’ve ever been at clinic.  According to my notes I’ve put on a kilo and a half in a month – pretty good going!  Especially considering a week of that was spent in hospital, where eating enough calories in a day is more like a carefully managed game of skill than a diet-plan.

While I was up there, since I was due to start back on my TOBI neb (a nebulised form of the antibiotic Tobramycin), I asked them to do a check on my lung-function before and after, as the last couple of months I’ve had of TOBI (it’s taken on a month-on, month-off basis) I’ve noticed my chest getting tight after a dose and I wanted to check it out.

Sure enough, my before and after L-F showed a drop from 0.7/1.4 to 0.6/1.3, which doesn’t appear overly significant, until you work out that actually what shows up as a 0.1litre change on paper calculates to a 14% drop in the “real world”.  And I challenge anyone to lose nearly a 7th of thier lung capacity and not notice.

So after a quick conflab, the powers that be (that’s my CF nurse and Doc B) sent an order to pop me on a ventolin neb to see if it would relax my airways back from the TOBI.

I haven’t taken ventolin in years, and even then it was only as an inhalor, not nebulised, so I don’t have a great deal of experience with it and didn’t know what to expect.

What I didn’t expect – at all – was to find that after a single 2.5mg dose, my L-F jumped to an eye-watering 0.9/1.6 – a scale I’ve not reached in over a year!

To say I was happy is to do understatment a disservice – it’s unbelieveable that a quick 2 minute neb can make such a difference to my breathing.  But more than just the numbers on the page, I really noticed it in my freedom and ability to breathe and walk and just generally not feel breathless.

In  fact, there’s a good story that will show you how good it was.  When I got up to leave the ward after the trial, I switched from the hospital-plugged oxygen supply back to my walkabout tank and wandered up the corridor to Pharmacy, from where I then walked back to the car with K, had a 5 minute telephone conversation, walked back to pharmacy, returned to the car and then popped quickly back inside for a pit-stop before we left.

When I finally got back to the car and switched to my “driving cylinder” (long story), I discovered that I’d forgotten to turn my walkabout cylinder on when I left the ward.  So I’d spent the best part of 45 minutes walking up and down and all over without once noticing a shortness of breathe and questioning my oxygen supply.  What’s more, I actually remember noting to myself how I seemed to be walking faster than I normally would without noticing any adverse effects.

You don’t get much better than that.   Consider me not only well chuffed with my day’s activities, but on a personal high both physically and mentally.  Things have a way of turning themselves on their head – it only takes a bit of positivity and something to add a bit of meaning and purpose to your life.

I did it!! I actually managed to go out on a Saturday night without a) running out of steam after half-an-hour, b) not being able to get out of bed the next morning and c) feeling too self-conscious about wearing my O2 while I was out.

It’s a big step for me, really, and I’m really happy this morning. It was K’s Dad’s 60th this week and the whole family (the 4 off-spring and relevent +1’s) headed out to Sam and Maxie’s, a new place in the “Hub” where the new business/hotel-type district of MK is going up.

If I’m honest, I’ve been fretting about it on and off all week, what with my somewhat unpredicatable blowers and anti-biotic reactions at the moment, because I really wanted to be there and share the night with the rest of the family. K and I have known each other for a long time, and I’ve known her family for most of our friendship, but it was also the first time I was joining up with a full family gathering as “one of them” and I really didn’t want to have to bail out because my chest was being beligerent
(sorry, Nick, but it is in the dictionary if you want to check…).

It’s probably going to sound funny to people who know me, but last night really did feel like a bit of a watershed moment for me – like I was being welcomed into the family. There was no fanfare or special treatment or anything like that, but just that feeling of comfort you get when you stop worrying about whether or not everyone is really happy that you’re there and accept that it really does appear that they can tolerate your company.

Of course, it was helped hugely by being able to bribe the twins round to my side my being a taxi, but you never get anywhere in life without the odd backhander, eh?

But I think most importantly for me last night, helped by feeling welcome and comfortable, was that I managed to get through the whole thing without worrying about how I was feeling. I seemed to have the perfect energy levels for the night. I didn’t arrive home exhausted, nor did I feel that I had to not do something because I wasn’t up to it.

I was about to say that I suppose that sitting in a restaurant having dinner isn’t too taxing, so I shouldn’t really make a fuss, but actually, on reflection, it shows how far I’ve come in my recovery since before Christmas that my mind is working like that. Back in November/December, the idea of spending 3 hours sat in a restaurant, oxygen or no oxygen would have been enough to send me to bed to sleep for a week – so it really is a big deal for me to have got through it.

It’s funny how these little victories often nearly go unnoticed and it’s one of the things I love about doing this blog. In the same way I said when I started out that I hoped writing it all down would encourage me to see the wood for the trees and not get bogged down in hard times, but remember to keep smiling, I think it helps me not to overlook the upsides which might otherwise get glossed over.

Whatever way you look at it, I’ve come a long way since the turn of the year – like any period in life it’s had it’s ups and downs, but it’s worth reminding myself that I’ve done some amazing things and I’m doing better than I perhaps would have hoped in terms of moving forward both physically and mentally.

A week in hospital for respite pre-show this week should also do me a lot of good and although I know I’m not going to like it much when I’m there, it’s been reassuring to have the knowledge of an impending stay to let me prepare for it, rather than the usual course of getting it hoisted on me when I’m at my lowest.

The next week can’t really go quick enough, but at least I’m on a high going into it, which should stand me in good stead for keeping my spirits up through it.

Have I mentioned in the last week or so how much IV’s annoy me? Methinks once or twice…

Yesterday was a really good day – I didn’t sleep very well, but I re-organised my drug schedule to get me out of bed at 8am instead of 6am, which meant I could get up and start my day immediately, rather than going back to bed after an hour when my drugs were done and sleeping till noon.

It also worked well because it let me take my catch-up sleep (that’s just me trying to avoid the wword “nap” really) straight after lunch, before my afternoon dose, rather than having to wait till after it and then sleeping too late into the afternoon, which in turn appeared to be disrupting my night-time sleep pattern.

Not only did it seem to work pretty well, the new schedule, but it also seemed to give me a lot more energy and get-up-and-go and as a result I had an enormously productive day, leathering through work on the new CF Talk, Laughter for Life and the Activ8 Show, all of which had been somewhat neglected over the previous week.

Having gone to bed tired and ready to sleep after my late dose last night, I was eagerly anticipating a good night’s sleep (which I got – YAY!) and another energy-filled, super-productive day. I was even starting to plan my to-do list for the day as I drifted off.

But high doses of wapping strength drugs will go and do odd things to your system. After a great night’s rest, I woke up not full of the bouncing, work-attacking energy with which I’d gone through Thursday, but with the apparent wakefulness of your average 3-toed Sloth, which saw me lumped on the sofa most of the morning working out how much of the to-do’s could be un-done for the day.

After lunch, I slept, again anticipating a post-snooze pick-up to revamp my day, but again seemed only to wake more tired than I had been when I went to sleep. Worse than that, though, was the fact that my brain saw fit to simply shut down and not operate for the rest of the day until about 9pm this evening.

I’ve thus spent almost all of the day/afternoon in a semi-comatose state on the sofa wondering where on earth all the energy and pizazz I discovered yesterday had gone.

It would appear that I’m back in the old give-and-take world of IV’s and energy which had me so frustrated in the run up to Christmas. As much as I want to be pushing myself forward and keeping ploughing on, I keep having to give in to my body and accept defeat on a day’s work.

If there were just some kind of indicator as to whether tomorrow was going to be better or worse, I think I could cope with it easier – it’s the apparent lottery of energy levels that’s really riling me at the moment.

I suppose I just have to look at it from the point of view that it makes each day more interesting and exciting because I never know what’s going to get thrown at me: perhaps there’ll be something new to spur me on tomorrow, or maybe I’ll be finding new depths of reserves to drag myself through the day. Who knows? Isn’t it fun?!

Today has been, frankly, a pretty rubbish day.

Yet again last night my drugs and brain conspired to keep me awake almost the whole way through the night,  letting me finally drift off for more than an hour just before my 6am alarm call for my morning IV’s, followed by my usually solid sleep-time of 7-11am being interrupted by phone calls, deliveries and other distractions.

So a bad start to a long day as it was, which put me in a less than fabulous mood for the rest of it, which in turn annoyed me because my cousin Katie was down from Brum to catch a show at the Theatre and we were planning on having a bit of a day of it.

As it was, I could hardly muster the energy to entertain, although we did have a good chat and a cracking Game of Life with K (which I won, natch…).  But I still had to collapse into bed mid-afternoon to catch up on sleeps.

My body was simply not keen to play ball today though and stubbornly refused to wake itself up from my nap, which dragged me further into struggles for general awake/happiness.

The thought of getting through an hour and a half’s work session was, I have to admit, less than appealing, so it came as some relief when Rheya phoned to pass a message from Suze to say that since most of my group weren’t in for tonight, it made more sense for me to stay at home, so I delivered Katie to the Theatre and sorted her tickets before heading straight back home.

No sooner was I back than my chest started playing silly buggers again and givingg me all sorts of grief – mostly muscle-related pain, I think, from where I’ve been sleeping and holding myself a little strangely due to the IV access in my shoulder.

Being both exhausted and in pain is never a great modd-enhancing combo, so I was getting spectacularly downbeat and po-faced when I discovered perhaps the funniest thing I’ve seen on TV in a long time.

Curled up in bed with K, we flicked onto Never Mind The Buzzcocks and I laughed so hard I’m sure the pain from my chest has migrated to my stomach.

I’ve really no idea who Donny Tourettes is – or even if I’ve got his name right – but he made for some of the most unintentionally hilarious TV viewing since You’ve Been Framed made people laugh.

Watching Bill Bailey and Simon Amstell (both newly minted personal heroes of mine) ripping into Donny’s bizarre attempts at either rebellion or humour, coupled with his own self-image of sex-god punk rockstar out to diss the world had me doubled over in laughter and nearly falling off the bed.

It goes to prove that no matter how lousy things get, I was right all along when I said that the only way to deal with the tough times is to smile through it.

God bless you, Buzzcocks.

IV’s are great because a) they keep you alive longer than you otherwise would manage and b) …… well, I think (a)’s pretty convincing so I guess it’ll have to do.

On the other hand, the list of why IV’s suck is much, much longer.

This time, top of my “Why I loathe IV’s” list is the unfortunate and highly rubbish side-effects that my Meropenem (drug) is having on me.  Now, I have a bit of a history with Mero (as with many of the drugs I take), mostly that it gives me hugely painful joints and muscles, but we have discovered that a short course of steroids to coincide with the Mero seems to do the trick in aleviating the pains.

Not so much this time, though.  Although I am doing better than I have been, it’s still giving me the weirdest and most annoying pain in my right hand.  It’s not even that it’s particularly excruciating, it’s just almost permenantly there and refuses to go away.  But since it’s only in my right hand, it seems a bit silly to moan about it.

I did check in with my friendly family on-call doc (my all-knowing Aunt) who looked it up on the web and assured me that it wasn’t doing me any harm, but probably lots of good and to persevere with it, which I have.

The hand aside, I’m also suffering the simple and commonly-acknowledged IV slowdown – the high doses of super-powerful antibiotics being a good stimulant of sleep and restfulness.  The only issue being my body seems to have set itself on the weirdest clock at the moment, not letting me sleep till the early hours of the morning, then letting me be deceived into thinking I’m wide awake in the middle of the day until it hijacks me and cuts off all brain and motor-function mid-afternoon and forces more sleep on me.

It’s weird this IV lark, and you’d have thought I’d have got used to it by now, after regular courses 5-6 times a year for the past goodness knows how long – but I still seem to be taken by surprise when it knocks me for six the next time I’m on them.

Still, I’m booked in for a week of rest and extra-physio (although I’m not sure the two necessarily go together…) in the Churchill next week, so hopefully I’ll have a storming second week and come out of it in tip-top fighting form for the big Laughter for Life publicity push and the run up to the show.

Not to mention getting the new issue of CF Talk off to the designers and shooting 2 days of video for the Activ8 Youth Theatre show.

IV’s may suck, but in the long run they let you do the things you want.

Festive recovery is progressing well – I’ve had two complete days of doing very little-to-nothing and looking after myself and I’m feeling all the better for it.

I’ve got a voucher-splashing trip to Borders planned for the morning, under the guise of taking my Dad over to show him how fab it is, and I’ll be merrily spending my way through the delightful vouchers supplied by K’s big bro and troupe. (Happy now?;-).

I’m still not entirely firing on all cylinders, but I’m finding it much easier to get around at the moment – albeit always tied to an oxygen cylinder or concentrator – and I’m not nearly as breathless as I was yesterday or the day before, which goes to prove two things. 1) that doing plenty of physio and getting plenty of rest really works and 2) TOBI, the nebulised form of the Tobramycin anit-biotic, really does do it’s job spectacuarly well, as I only restarted it on Boxing day (it works on a month-on, month-off basis).

Also had an interesting conversation with O2 yesterday.  I’ve been thinking a lot about getting hold of a Blackberry phone/email device thingy, mostly because it’s a fair assumption that this year I’ll be spending a good deal more time in hospital and that being the case, it would be great to have access to my emails from my bed.  The hospital as it is doesn’t have workable or affordable internet access, so a Blackberry seems ideal.

What it would mean is that while I’m laid up with nothing much to do, not only can I carry on communicating with my friends without running up an insanely huge text message bill, but I can also carry on with most of the work I do for the Trust, which is handled largely through email with contributors, designers and the “bosses” there.

Now, I’ve seen a few really attractive deals on O2 for Blackberry Pearl phones and contracts to go with them, namely one which tell me that if you sign up to a £30+p/m voice contract and £10p/m Blackberry Tariff, you get the Pearl for free.

So I phoned and spoke to O2 customer services and told them that although I’m only 9 months into my current contract, I’d like to add the Blackberry Tariff and get the Pearl.  Fine, they said, that’ll be £220. 

Now, bearing in mind that the phone alone is advertised in Carphone Warehouse at the moment for £199, this didn’t seem like a fabulous offer.  I told them so.  They told me that since I’m not due an upgrade, there’s nothing they can do. 

I outlined my history with the company – loyal customer for over three years, no problems or complaints, no other issues – and suggested that perhaps, since I’m only 3 months away from the end of the contract, maybe they could budge a little on the price of the phone.  I didn’t say I wanted it free, just a little leeway on the £220.  But no, they don’t do it and no one there is authorised to.

So I thanked them politely and hung up, redialed and went through to the option on their phone menu saying “If you are less than happy”.  I outlined the situation again and got the same response – nothing they could do because I was outside the upgrade window.

At this point, having reiterated the fact that I’d been loyal for 4 years, never missed a payment, never raised a problem with them, never kicked up a fuss about anything, I let them know I was feeling like a mildly undervalued customer.

In fact, it had occurred to me whilst talking to them that it would be cheaper for me to go down to Carphone Warehouse, take out a new contract – on exactly the same terms as my current one – plus the Blackberry tariff, get the phone for free and pay out the remainder of my contract with them than it would be for me to get the Pearl through them.  I told them.

At this point he put me on hold and came back 5 minutes later telling me that having spoken to 2 different departments, the 2nd one told him that if I called them back on the 4th January, they would do the upgrade for me.  Just like that.

Interestingly, when I asked what department I needed to speak to when I called back, he told me it was the “Safe” department – the people you talk to when you say you want to cancel your contract.  So being a “valued” customer isn’t enough to get you benefits and deals as part of O2 – you really only matter when they think you’re going to defect to Vodafone or Orange.

Still, who am I to grumble, as of January I’ll be my own personal walking office – marvellous!

Quite before the media maelstrom that’s been hurtling around today, I spent almost all of yesterday feeling absolutely awful.  It’s remarkable when I look back with all the things I’ve done today that I wouldn’t have been able to even touch on today. 

In all since 7am this morning, I’ve done 3 phone interviews, 1 studio interview, 1 photoshoot and written a 700-word article for the Guardian website.  This time yesterday I was sat on a ward in Oxford hoping to goodness that the docs weren’t going to put their foot down and keep me in.

Yesterday morning I woke up with the worst headache I’ve yet experienced, all thanks to the veto-ing of my NIV due to the pneumo scare.  Not only that, but the CO2 levels in my blood had obviously started to cause havoc elsewhere and I found myself lent over a toilet bowl 5 minutes after waking up depositing whatever was left in my stomach from last night.

I haven’t been sick in a very long time, and I’d forgotten how unpleasant it was.  not only that, but without oxygen on, it left me gasping for air. 

I manged to find my way back to bed and do my IVs, which took a lot more effort than usual, and got pain killers down me with a banana to try to settle my stomach and help them absorb better. 

We had to leave the house by 9.30, so I forced myself up and out of bed, but my head was swimming.  Of all the things I’d meant to do before heading out, I accomplished at most 2 of them, and then only half-heartedly.

At Oxford, I had a session with my physio which saw me bringing up some of the nastiest stuff I’ve seen come out of me for a while.  Not only that, but my headache was refusing to go away and my exhaustion was creeping up fast.

The docs came round after my physio session and we discussed the pneumo/chest pain.  Considering I had a good night’s sleep (barring the morning doldrums), and the pain seems to have gone away in my chest, it would appear that it wasn’t a pneumo after all, just me jumping to not-entirely-illogical conclusions on feeling more acute than usual pleuritic pains in my shoulder.

We decided that the IVs clearly hadn’t done the job they were meant to, and so I’ve been put on an additional drug to marry with my Colistin, Meropenem.  Usually, Mero causes me severe joint pain, but we discovered last time I took it that combining it with steroids was usually effective in taking that element away. 

The only draw-back being once steroid leves go over 10mg (I’m now on 20mg) transplant becomes less likely, for various medical reasons too detailed to go into here.  But it’s only for two weeks and it’ll hopefully improve my lung function and exercise tolerance, so it’s got to be worth it.

Eventually, after a supervised first dose to make sure I wasn’t going to have a massively adverse reaction to the Mero, I got away from Oxford (chauffeured by Dad) just after 2pm, getting back home around 3.30pm in time for some shut eye before heading out again to stock up on portable oxygen cylinders from my stash at the flat.

After a “who’s got the keys” palaver of indeterminate length, we eventually got back in around 7 pm and I was shattered, completely exhausted and good only for sitting on the sofa and wiping out.

Although I did get a bit of a second wind in the evening, around the time Em phoned me to talk about the news and the reactions on the message boards, I was still in bed as early as I could be.

The most important part of my day, though, was in the change of stance on Neve, now that the pneumo had been discounted.  Going to sleep with her on, I drifted off into the land of slumber and only woke on a couple of occasions before my early-morning radio address.

It was remarkable and wonderful to wake bright and alert and with no discernible left-overs from a proper night’s sleep – no headache, no sickness, no nothing.

It’s paved the way for a wonderfully busy day, all of which has taken place within the confines of the house, with the exception of a quick trip up the road.  I’ll be back on here later, with a bit of luck, to outline where else you can see my distinguished self discussing life with CF and other interesting topics of the day…

Updated 01/12/06:

After a breathless day-and-a-bit of media storms, between myself and fellow CF Trust Ambassador Emily we have notched up 4 print articles, over half a dozen radio interviews and she bagged all the Telly attention (but then, she is prettier and much more of a draw than me…), not to mention the rest of the CF community’s coverage, which has included local news country-wide, This Morning, Newsround and forthcoming features in the Daily Mail other weekend magazines.

Articles featuring Em and/or I are available at the Guardian, Herald, Independent and Mirror and Emily also gets a mention on Nick Robinson’s blog on the BBC website.

Articles have also appeared in the Scotsman and Evening Times for our Scottish Brethren, thanks to work from Anders, a North-of-the-boarder friendly-type.

I finally put my finger on what’s been bugging me about my chest over the last couple of weeks (apart from the obvious lack-of-performance, obviously).

It’s the illogicality. (Yes, I know that’s not technically a word, but it fits and it suits and you know what I mean.  Plus, I think it’s quite a good word, actually)

I like everything in my life (except my thought processes) nice and linear.  This progresses to that, which results in this.  Start-middle-end.  Nice, steady progression along a linear frame-work where cause-and-effect are easily identifiable.

What’s bothering me most about my chest at the moment is that it is entirely impossible to predict what’s it’s going to do from one moment to the next.  To say it’s changeable is to say that England’s chances of winning the ashes are a little bit on the low side, or that Andy Robinson is “quite” likely to lose his job; the biggest understatement since the brand manager for sliced bread muttered, “I think this could be quite big.”

If I could chart the course of a day and how my chest would be feeling at any given moment – breathless, free and easy, clogged, clear, painful – I think I could cope with the ups and downs better than I am at the moment.

But when I slide so seamlessly from fine-and-dandy to gasping-for-air within the space of 10 minutes having done nothing more than reach for a glass of water for the last hour, it passes all levels of expected fluctuation.

Of course, that’s not going to help things improve at all, but it’s nice to have at least identified part of the problem.

Today’s been pretty good, really.  I woke, as expected, with the most terrific headache first thing this morning, and it took a good hour of sitting doing nothing at all, plus copious quantities of water, tea and painkillers to rectify, but it did go away.

No sooner had I wrestled myself from my bed than we were joined by K’s tiny niece and nephew (aged 18 and 6 months respectively, give or take a few) who cheered the morning up as only lovely, smiling, happy, playful little children can.

A morning of playfulness resulted in an early afternoon of sleepfulness, followed by a later afternoon of not-entirely-awakefullness, and a visit of my CF nurse from Oxford.  That’s not to say playfulness = nurse visit, that bit was merely coincidental, but the rest of the day’s tiredness was precipitated by the morning’s exertions.  But you knew that.

I’m off to Oxford tomorrow morning to see my physio and check what my lung function’s like.  I’m due to finish IVs at the end of the week, but I’m not sure that that’s necessarily going to still be the plan as of tomorrow.  We’ll have to wait and see, but a further course of a week or two may well not be out of the question, seeing as I have yet to notice any kind of significant improvement in lung function, sats or exercise tolerance.

It may be that I’m now at a stage where increases are unlikely and it’s more of a preventative measure, so I may be hoping for a little much, but I’ll grill my team on it tomorrow and see what I should be aiming for.  I think goal-setting is going to be important in the big-picture recovery process from here, and I want to make sure that they are realistic.

Tonight calls for another night on the sofa in front of the telly, relaxing and letting my b body do as it pleases, marshaled by physio and nebulisers.  It’s undoubtedly going to be quite hard to take myself to bed tonight as it’s never easy to sleep knowing that when you wake up you’re going to feel 100 times worse than you do as you settle down, but maybe I can take some comfort in the fact that I at least know I’ll get some sleep.

Things have been steadily improving over my week out of hospital and after my insomniac murmurings last Friday, I was whisked to the Churchill for bloods to check the dosage of my current IV antibiotic regime. (The two things are, actually, unconnected, despite how I made them sound in that sentence…)

Just as I was leaving the flat, I got a call from my physio asking me to take mini-Neve in with me (mini-Neve being the smallest NIV I’ve been given, as compared to Neve and Fat Neve). It turns out that, as suspected, NHS employees have far too much time on their hands and often find themselves perusing the websites and weblogs of their patients.  And, I trust, are now in the process of calling I.T. Support because they’ve just spat coffee all over their keyboard.  Unless they’re at home. (Don’t worry, you can always blame Seb.)

But clearly, it’s all part of the ever-expanded and improved NHS service and I’m certainly not going to mutter anything in the way of discontent, because no sooner had I been leeched by the vampires in pathology, than I was on the old ward (now the Treatment Centre) being shown the ropes on my New Neve. 

New Neve (who will from now on simply go by Neve, because I’m a lazy git and typing New every time is far too annoying) is not as swish-looking or well-designed as the last one, and still stands with one foot somewhat in the analogue age, but appears to be much less inclined to a) stop breathing and b) stop breathing.  Both of which I see as positive factors conducive to good breathing overnight.

And what a God-send she is, too, sorting out my insomnia with a breath of humidified air, perfectly in sync with my own breathing and without even a hint of giving up the ghost halfway through the evening’s work.

Settled into my nice new overnight world with my nice, new overnight partner, the weekend passed in a wonderful haze of relaxation and sleep.

Which is clearly not enough excitement for my body.

At 5.30am this morning, with Neve being somewhat cranky (well, it is Monday morning), I wake up lying on my side in bed with a pain in my chest.

“Nuts,” I think to myself, “I must be sleeping on my port and making my shoulder ache.”  I readjust myself and rustle around a little.  The pain stays.  I realise I’m lying on my left side, the opposite to my port site, so the pain emanating from my right shoulder can’t be port-pressure related.

I roll over.  It gets worse.  I breath in deeply at the discomfort.  It gets worse.

My by now increasingly awake brain sets into motion and starts ticking off symptoms on it’s mental self-diagnosis list: stabbing pain in specific spot on chest: check; increases significantly on inspiration: check; spreads up into the neck and slightly down the arm on inspiration: check; lessens on exhalation/improves with shallow breathing: check.  Previous symptoms-compatibility: pneumothorax, to the letter.

A pneumothorax, for those of you out of the loop on medical jargon, apart from being very hard to spell (and stumps most spell-checkers) is a partial collapse of the lung.  I’ve had them before, four times as a matter of fact, although previously all on my left side, and they are usually identified by a “popping” sensation before the pain arrives, which I sadly appear to have slept through this time.

They can vary in severity, from minuscule to major, the very worse being only slightly less than an entire lung-collapse. 

Luckily for me, mine have never (and wasn’t this morning), been bad enough to warrant any kind of emergency treatment.  Frequently, the only course of action for pneumothorases (check the correct plural usage!) is to insert a chest drain, a process which I’m assure is as painful and uncomfortable – not to mention as inconvenient – as it sounds.

Sticking to my propensity for drama without the critical edge, my lung has behaved itself in not deflating any more.  It has, rather mischievously, managed to detach itself ever so slightly from my chest wall right around the point where my port is located, which means it’s pretty much impossible to spot on an X-ray, although I know for certain it’s there.

So the recovery and adaptation process is thrown into turmoil once again.  Having spoken to my wonderful Doc at Oxford, I have managed to avoid immediate admission, but I’ve had to retire to Mum and Dad’s to recuperate as with the combination of pain and decreased tolerance to any kind of movement, I’m going to need more babying than K can afford me at the flat right now.

It’s a massive blow, if I’m honest, as the last week or so has caused a rather marked sensation of losing my independence and to now be taking a further step back to living at home with the ‘rents is a bit like having your face rubbed in it.

That’s not to say anything against my parents, and indeed there’s nowhere right now I’d rather be, because it’s intensely relaxing and easy to cope with, knowing that I can get whatever I want just by asking and I don’t have to worry about doing anything for myself.  But in the grand scheme of things, it feels like another step backwards.

I’m aware of just how bizarrely those last two paragraphs read: at once mourning the loss of my independence and celebrating being back at Mum and Dad’s and the security and reassurance it brings, but that’s kind of the place I’m in mentally at the moment.  Everything situation has 2 sides to it and I seem to be constantly experiencing both of them at once.

Right now, the painkillers are working and I’ve had a rest and a sleep this afternoon, things are looking OK and I know I just need a few days of rest and I’ll be good – or improving at least – but I also know that tonight, when I wake in the middle of the night with chest pains, and quite possibly with a headache since using Neve is out of the question with a pneumo (the pressure being too much risk of causing a much bigger collapse), I will struggle to see the positives here.

All I can hope is that if I fail to get back to sleep, I can come down here and log on to this blog and remind myself of the positives – that they are there and they will be tomorrow and that improvement is just a matter of small steps taken one at a time.  Sometimes they go a little the wrong way, but I know if I wait long enough to recover between mis-steps I’ll end up striding forward again.