Archives: Oxygen

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.

After my somewhat self-pitiful mini-rant last week I seem to have slightly dropped the blogging ball and not had a proper update – the longest I’ve gone without an update since I started this blog I think.

I blame many things – anything really that absolves me from accusations of being too damn lazy/forgetful to write something interesting on here – and deny all such mutterings from the kids in the back.

Still, things have picked up mightily since last Thursday – I knew it would only be a blip, and it was, albeit a two-dayer, but a blip none the less. I struggled for a couple of days to shake of the negative thoughts and not-so-nice images in my head, but I’ve got a pretty good daemon fighter in my head after all these years, so I get back on top of things pretty quickly.

This weekend was a weird one, because I had lots to do but couldn’t escape the fact that during the week I’d actually been far too busy and needed to take a bit of time to myself to make sure that I stopped myself from sliding down hill.

I headed to Oxford on Friday to see my physio and we made plans with my CF nurse to start a course of IV’s at the end of this week. They wanted me to come in, onto the ward, for the first week of the course, but I managed to negotiate a stay of execution until the week after to ensure that I didn’t have to miss another week of work. (I’ll now be in hospital for half-term week, so not nearly as bad as going in next week).

It also means that I can still attend the meeting I’ve been invited to at the Department of Health next Tuesday, the subject of which is sadly under wraps at the moment, but I’m sure I’ll fill you in on at a later date.

Today, however, I was coincidentally down at the DoH as well, meeting with the team who deal with oxygen provision to discuss the problems that I and other PWCF have been having with the home oxygen service, mostly with relation to Allied Respiratory.

It had originally been scheduled as a meeting between all three sides, but in the end the decision was taken by the DoH to have a separate meeting with Allied, which the CF Trust will also do, to air the concerns directly.

The purpose of today’s meeting was to express as clearly as we could the importance of so-called abulatory oxygen to PWCF and their needs for portable O2.

It was actually a really positive meeting, with the two representatives of the DoH really keen to take everything on board and correct things. It’s fair to say that things are a good dal better with Allied than they were even 3 months ago when I first started using them, but it’s important for the issues that did come up to be properly looked at to ensure nothing like that happens again.

I’m confident following the meeting that good things will come from it, including a commitment to looking at lighter, more portable forms of oxygen to make getting out and about easier for people like me who find the cylinders a weight.

I also hope that the feedback with regards to customer service is picked up on and driven home to the company, because their staff training is simply appalling.

The meeting did exhaust me, though, so it’s an early night and restful day tomorrow on the cards.

Ah, well, you can’t have it all going your own way, can you?

After the best part of a week spent luxuriating in the delights of life – happiness, exciting prospects, wonderful surroundings, beautiful people and all the rest of it – I knew that sooner or later things would come crashing back down with a bump.  And bump they did.

Yesterday, as I hoped, we went down to Mazda to order our new car and things seemed to pass off without a hitch.  But low and behold, I get back home this afternoon to find a voicemail message from the dealer telling me that Motability won’t insure an under-25 on a catagory 9 car – so I’m 4 months too early to get the Mazda 6.  How ridiculous is that?

Having phoned Motability, they’ve said I can appeal it in writing and they can take it to their insurers and see if they’ll make an exception, but it seems crazy to have to go through all of that palaver for the sake of 4 months!

But actually, although the whole car thing is a bummer, I have to confess that that’s not really what brought me down this week.  What really dragged me off my happy perch was a visit to Milton Keynes College on Thursday afternoon.

K is doing an access course to get her set for uni entry in 2008 and had to enroll officially before her class on Thursday night, which meant we had to go down in the afternoon and do the enrollment necessaries.

I suppose I should have thought about it ahead of time and prepared myself for it, but I didn’t.  The surprise element may have been a factor in my difficulties, but I can’t blame that entirely.

The problem, largely, is being around groups of teenagers and young adults, hanging out in corridors as they do and being themselves at their supremely judgemental young ages.  I know that this is a MASSIVE generalisation and that not ALL teenagers are hugely judgemental, but I remember being a teenager, at school, and what I would think of people walking past me in the corridor and how much we used to jump on anyone or anything that was “different”.

And, for the first time since my health dipped and O2 became a big part of my life, my worst fears came true – I felt like a total freak.  It didn’t help that we were forced to walk almost the entire length of the campus between two departments we needed to see, which had me not only navigating through huge throngs of students, but doing it even more breathlessly than normal while lugging one of my really heavy black O2 cylinders with me.

I also know that most of the negative vibe I felt I was creating almost entirely within my own mind, but that didn’t make any difference to how I felt, or how I feel about the experience.

It was supremely negative – something which I’m not very used to in my life.  Almost any situation I can look at, take a spin on and come up with a positive side, or a brighter perspective.  Even this blog is titled after my attitude to whatever life chooses to throw at me.  But for the first time in a very long time on Thursday, I felt small, insecure and very, very different.

What made it all the harder is that I’ve spent so long now building myself up and repairing the somewhat fractured self-image I had in my final years at school that I don’t have the coping mechanisms to help me through feelings like those.  I seemed to go into a sort of semi-shock, no use to man nor beast for an hour or so.

I was only lucky in that I had to go straight on to another meeting, this time on friendly turf at the Theatre with Rheya to go over our video shoot, which managed to occupy my brain long enough to push the negative thoughts from my head and start me off on a clean bill when I got back to my own space.

I suppose what I have to take away from the situation is a knowledge of how bad it can get.  Although this may sound mightily pessimistic on the surface, it’s important to me and actually something I find quite positive.  Life is all about the ups and downs and I’ve now got a whole new barometer  for the downs – college on Thursday was tough, and way beyond anything I’ve experienced like that for quite a while. But that also means that i’m unlikely to find another experience like it for a while, either.

And when I think I have, I can just remind myself how bad this was, and almost immediately make myself feel better that it’s not that bad.

I was saying all through the ups last week that I was enjoying them because you never know when the downs are going to come in the roller-coaster of life, and having them to cling to when the week’s got rough has made a big difference.  Where once I would have been bummed out for days by an hour’s worth of bad experience, instead I can focus on all the good things that have happened and are still happening and turn my face away from the rubbish that I don’t need on my mind.

Enjoy the good times and remember the bad – just don’t let them rule your thoughts.

So the New Year has started proper now, hasn’t it?  First day back at work notched up and I’m relishing the challenges ahead.

It was awesome to be back at the Theatre and to see the group again.  The majority of the girls are still the same people I’ve been working with for a while now and it was like slipping back into a comfortable pair of shoes, or a freshly made bed, or something similarly warm, comfortable and welcoming.

The guys I did know seemed so happy to see me that it really lifted my spirits and the ones who I didn’t didn’t seem to think of me as too much of a freak, which was good.

I have to confess, I was feeling pretty nervous ahead of time – it’s been over 6 months since I last properly set foot inside the Theatre and whilst it’s full of familiar and friendly faces, I couldn’t escape the fact that for me, a lot has changed since I was last there.

Striding in with my oxygen cylinder (OK, strolling), I tried to embody the kind of confidence with which I normally arrived at the building, but I found it a lot harder to muster my usual sense of artistic bravado.  Somehow the oxygen makes me feel weaker, and more self-conscious, and at the same time I know that it’s only my attitude which is creating that impression.

As much as people tell me that no one notices the O2, I know that it’s not true.  It may not be as big a deal to other people as it is to me, but it’s also nonsense to pretend it’s invisible.  My hang-up about looking “ill” came back with a vengence and seems to be staying firmly put for the time being, although I’m trying hard to learn to ignore it.

I didn’t wear my O2 all the way through the session – apart from any vanity-related reasons, it’s hard to fully engage with a group when you’re tied to a cylinder and I sure as heck wasn’t going to have the energy to lug it all around the rehearsal room with me.

On reflection, I should have been more strict with myself and re-attached when I was sitting down discussing ideas or talking to the group and only coming off when we were doing something that demanded me being on my feet.

That’s a big part of the learning curve that I’m going to be on for the next few weeks, though, and I know I’m going to have to push my boundaries to a large degree and see what I can and can’t cope with.  I appreciate that I don’t have much room for error, but if I don’t try things I’m never going to know how much impact I can have on things.

The rehearsal itself went really well.  The group are all really keen and worked really well, incorporating the new people quickly and in a much more friendly and welcoming way than has often happened in the past. 

They were also all really pleased with the ideas for the show that Suze had drawn up and happy with the casting for the sections we’ve decided on.  There’s going to be a few tough calls on casting for some of the pieces and I think the Hamlet section could prove a tough one to fill – whoever we choose is going to have to work hard.  The great thing with this group, though, is that you know they all will work hard and give it their best.

The 4-hours I was out of the house was, I think, about my limit for the time being – although the strain was doubtless enhanced by my being off the O2 – and on Thursday I really felt it. 

I woke up feeling pretty good, although tired, and I knew I had to take it really easy all day.  Things seemed to go pretty well in recovery terms until about mid-afternoon when everything took a bit of a nose-dive and I completely ran out of energy.

About 5pm my reserves seemed to have deserted me and I was left absolutely shattered and dying for my bed.  I eventually made it until about 9pm, but not before I’d managed to cause a mini-argument with K over the phone by trying to organise things when I was tired.

I really knew I was exhausted when I found myself in bed reading Ben Fogle and James Cracknell’s story of their Atlantic rowing race and getting emotional with the ups and downs they were experiencing in their moods.  When they talked of missing their wives and getting tearful and I started welling up too, I knew I’d let myself get WAY too tired.

Still, today has been a clear and bright day (mentally, if not meteorologically) and I’ve been to Oxford, where my lung function was only ever-so-slightly down (which I still put down to it being taken before not after physio) at 0.7/1.3 and my weight had risen to 50.8kg.  I also spoke to the dietitian about the sickness I’ve been feeling and she prescribed me… something I can’t remember for a couple of weeks to see if it takes it away.

Tonight, with my Gramps here and my bro heading off into the sunset on another punishing course (who’d be in the army, eh?), we sat and ate dinner together before he high-tailed it away to colder, wetter climbs.  Rather him than me. 

Now all that’s left is for me to get my beauty sleep before Phase 1 of the Move Home tomorrow.  If all goes to plan, I’ll be back living in my little apartment paradise by this time Sunday!

Anyone watching last night’s edition of Watchdog would have seen the BBC taking Allied Respiratory to task for their abject failures in the oxygen delivery system – which you may have read me blogging about in the past.

You would also have seen that doyen of small-screen campaigning, my good friend Emily, performing admirably in berating the oxygen companies whilst simultaneously looking gorgeous and intelligent at the same time.

Frankly, there was very little of substance to the programme by way of solutions, but it was invaluable to help highlight the problems that oxygen users are facing and the poor job that Allied have been doing.  It was telling that they didn’t send anyone along to the programme, simply supplying an apology statement.

To this end – although not related to the Watchdog programme itself – I’ll be going along to a meeting at the end of the month with the Chief Exec of the CF Trust at the Department of Health along with representatives of Allied.  Although pwcf are not the only ones who depend on oxygen delivery, it plays a significant part in many of their lives and any benefits or progress we can make on our behalf will only serve to benefit others as well.

Of course, it should really be Em’s realm to follow up her campaigning for better oxygen provision, but as we are all so wonderfully aware, she is otherwise detained at the moment!

Speaking of which, by way of an update – Emily was taken off her ventilator yesterday and is now breathing on her own with her bright, shiny, clean new lungs!! Hooray for her and here’s to many more years of happy deep breathing!

I’m still pretty impressed at myself just now for not pushing too hard and doing too much.  The nebs seem to be doing their jobs and keeping me fairly clear, and I’m sticking to the O2 all the time when I’m not using Neve.

Yesterday I had a FANTABULOUS couple of hour tour of Borders – Christmas voucherage always being a good reason to get out and about.  The best thing about Borders, among all the other best things it has, is that even in the height of the new-season sales, when the car park is full to bursting, the store’s so big it doesn’t feel busy at all.

Apart from finally getting to enjoy some proper browsing time – and by “proper”, I mean time enough to look around, then grab a book and sit and read the interesting bits that you want to read and put it back on the shelf when you’ve garnered all the useful info from it – it also served as the first time I’ve properly worn my oxygen out in the big wide world.

Those of you who were around early on in this blog may remember my difficulties coming to terms with the idea of venturing out and about with my O2 on and my reluctance to do so.  I still don’t think it’s entirely gone away, but I reasoned with myself that if I was going to be spending a couple of hours in the shop, it would be really silly of me to think I could do it unaided.  Especially when I’m doing everything else I can to make sure I look after myself and don’t take huge steps backwards.

So I grabbed one of the light-weight cylinders and trotted off with Dad and K to explore the store and we all had a whale of a time.  It was brilliant flitting between shelves, digesting bits of books, moving around and sticking my nose into all sorts of sections I wouldn’t normally look at.

I think we all struggled with not spending heaps of cash, but I did managed to spend the vouchers K’s bro and his family gave me, which was cool, netting myself Inside Little Britain (which I’m ripping through at pace) and a book about Max Clifford that I’ve wanted for a while.

The rest of the last two days have been spent very sensibly doing little-to-nothing in order to save my energy for the weekend ahead.  Tomorrow night for New Year, I’m hoping to bee able to make it over to a house-party S&S are holding at the Lodge. 

The plan at the moment is to chill out for the day and catch a late-afternoon nap in order to get up and over there for around 10pm, which should give me a couple of hours party time, followed by midnight and a bit of wind-down before scooting home.

New Year’s day I have my Godson coming over, which will be brilliant, but again very tiring, so I’m forcing myself to stay in bed for the morning and do plenty of physio while resting as much as possible so I can make the most of the afternoon with him.

This is going to be a major test of my stamina-planning ability and may have a massive impact on my decision as to whether or not I can try to phase a return to work in the near future.  What I’m hoping is that if I prove to myself I can manage my fatigue, then I will be able to take myself to work for a couple of hours on a Wednesday night to work with the oldest group. 

So I’m looking forward to the dawning of the New Year, with the feelings of energy and hope that it always brings, and I’m hoping that my planning and self-discipline holds out for the weekend and I come out of it tired but positive.

Here goes nothing….

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!

Had a really good giggle last night when I ventured out with the fam and K to watch my bro enjoy his birthday pressie from earlier in the year with 10 minutes fly-time at Airkix indoor skydiving centre in MK.

It’s unbelievably cool – a little plexiglass bubble one story up above a pair of jet turbiney things (that’s their trade name, obviously), which serves to suspend people mid-air as if falling at great speed from a plane.

My bro, the sicken sports fanatic that he is, got on amazingly well.  He did 4 “jumps” of 2.5 minutes each and manged to learn 8 out of 10 techniques of flight.  His instructor told us afterwards you’re supposed to learn one per flight, so he’d doubled the expectation and mastered most of them within his 10 minutes.  I really hate him sometimes.

Mind you, it was hilarious to watch him with his little cheeks wibbling away in the uprush of air.  He even managed to dribble upwards.  It feels a little odd when you watch people do it, because you’re the other side of a plexiglass window about 2 feet away from them, so if they lose control a little, they endup nearly head-butting you.  Nervous laughter abounds amoungst the spectators getting a little weirdly close to people the don’t know in zoo-like conditions.

It’s an amazing thing, though, the Airkix centre and I have to recommend it to anyone as a gift, or even as a treat for yourself.  It’s not cheap, I know that much, but it looked like so much fun.  I was extremely jealous, but I’ve got something else to add to my list of post-tx “must do’s” now.

After we watched his diving antics, we all headed off for a nice Tex-Mex dinner, which went down wonderfully.  By the end of it, though, I was exhausted.  Is wasn’t until we were in the car on the way home that K pointed out that I’d woken up at 6.30am that morning (no reason, was just awake and couldn’t nod off again) and without a sleep in the afternoon, it was no wonder I was a touch on the snoozy-side.

This morning I woke up even earlier, 5.30am, with roaring chest pains.  After my last little pointless jaunt to casualty with over-exuberant pre-diagnosis, I decided it best just to grab some painkillers and immobilize myself for the day, so I duly took to the sofa in true grumpy-lunged sulk.

Watching the sky-diving and at the restaurant I’d gone without my O2 and I think this is my body’s way of telling me that it was distinctly unimpressed with my choice to move around quite so much without additional support. 

I’ve been a lot more comfortable this afternoon than I was when I woke up, but I know a chiding chest when I feel one, so I’m sworn to “good boy” status for the next few days to make sure I can make the most of Christmas.

It was also pointed out to me today by the lovely Lady K that my last update vaguely referred to things going on in April without any real expansion.  Apologies for the vagueness, and I promise I’ll post with full and inclusive April updates shortly, but for the record there will be a fundraiser for the CF Trust through the MKT Activ8 Youth Theatre by way of a mainstage performance in the middle of April.

More to come, so watch this space….

For all the forward motion I’ve been making recently, the pendulum was bound to swing back.  I’m sure someone far more intelligent than me said something once about equals and opposites and all that kind of thing, but I have better hair than him, so I can’t be bothered to quote him properly.

Still, after confidently striding forward and warning myself strictly against doing too much too soon, I spent this afternoon in bed after, well, doing too much too soon.

I hasten to my own defence to say that a) I spotted it early and nipped it in the bud and b) actually the hour-or-so I spent in bed on Neve (hmmm… maybe not such a clever idea to name the NIV after all – that could get a little confusing) and the extra session of physio have done me the world of good and this evening I feel top-notch.

Yesterday I went to Oxford to finish IVs – that’s a grand total of 5 weeks all together, my record for recent times.  My chest is a lot better and my lung function was hitting the 0.7/1.4, which is about as high as I go these days.  For those of you who work in percentages, that’s very roughly 20%/25% predicted.  More encouragingly, my SATs were running at 93% on 2 litres O2, which is unheard of for my since around August.

I’m coping pretty well off-oxygen now.  I’m still using it almost all day, but I can cope with wandering around shops (ok, Borders) without it for an hour or so, which is good.

I try to justify it by saying that it makes shopping a whole load easier not having to lug a cylinder around the shop with me, and I reassure myself that I’m good and have it in the car when I’m driving and wear it all the time at home, but if I’m truly honest with myself, it’s still very much a vanity thing.

K and I decided we wanted to cook dinner tomorrow for Mum, Dad and my bro, who’s home for Christmas, to thank them for putting up with me for the last few weeks (well, not my bro, ‘cos he’s not had to cope with me invading his life, but it seemed a bit mean to cook for everyone else and not him when it’s in his home…).  So we had the cunning plan of hitting Tesco’s late last night to avoid the crowds.

At 8pm we thought we’d got it right and BOY were we wrong.  It was still heaving and in one despairing moment of realisation I stood at the threshold of the store in Kingston and realised that it was WAY too huge for me to wander round, especially at the end of a long day.

It’s always a little dispiriting to have to acknowledge your limits – especially when things are looking up again.  But I’m proud of the fact that I didn’t just try to “soldier on” through the shop and completely wipe myself out, but instead called it a night with two bars of Toblerone and headed home.

I think, actually, our late-night jaunt is probably the crux of what lead to my energy shortage this afternoon and, again, I’m pleased I spotted it and took action (or rather, in-action) to combat it without trying to soldier through.  I feel much better for it physically and it’s given me a boost in my mental confidence to know that I’m learning to listen to my body again.

So tomorrow I’ve prescribed myself a day of rest, doing nothing all morning and afternoon and plenty of physio so that I’ve got energy enough to help K whip up a storm in the kitchen and give Mum and Dad a proper thank you.  And my bro, I suppose…

So, it turns out I’m not really very good at this adapting lark.

On an evolutionary scale, I’d be stuck somewhere around the fish-with-lungs kind of level – broaching the edges of a vast transformation but not quite grasping the basics of the new world laying itself out before me.

Everything is tiring.  Not just averagely sleep-making, I mean tiring.  Moving from one room to another if I have to slip off my O2 to change supply (because, let’s face it, I’m not about to raise the subject of O2 lines with Allied any time soon, even if it was an idea that appealed to me, which it doesn’t) can lead to a required recovery period of several minutes if not longer and the merest hint of further activity leaves me body screaming for bed.

The biggest problem I have is learning to listen to what my body’s telling me and then making the appropriate decision and acting upon it.

For instance: this evening I am beside myself with tiredness.  I didn’t sleep incredibly well, waking fairly often through the night in discomfort and from odd dreams.  Today, my wonderful Godson came to visit and we had a great day playing games and watching movies and just generally hanging out.  But it’s left me completely shattered.

The most sensible course of action would seem to be to take myself off to bed and sleep, but he left at 6pm, which means that if I’d slept for an hour or more at that point, which I desperately wanted to, I know that come 11pm tonight when I’ve finished my evening IVs, I’d have been unable to get myself off to sleep.

So I tried just taking myself to bed and relaxing with a book, which worked for a while before tiredness crept in and made the book a blur, on top of which the urge to spend a little more time with my soon-departing bro crept in.

I came downstairs and settled in the kitchen (comfortable but not sleep-able) to read some of the Sunday paper and we had some left-over scraps from lunch for our supper with Mum and Dad before he left.

But I’m still no better off in the tiredness stakes, and I don’t really know what to do about it.  I know that, listening to my body, I should be in bed right now, but I have a dose of drugs to do in an hour’s time, which will take an hour to go through, and if I fall asleep before then and have to wake up for them, that’ll be my night totally ruined.

I suppose one could argue that if I have nothing to do during the days, perhaps it doesn’t really matter what time I sleep, so long as I’m getting enough rest in during the day.  I could, for example, live like a badger and stay up all night watching the Ashes and take myself to bed when the day dawns, but I’m not sure that’s the answer.*

For one thing, being up all night on my own I know I wouldn’t feed myself properly then I’d miss all my day-time meals and so end up losing weight, which I really cannot afford to do.

Further to which, if I needed anything, had a nasty turn or my oxygen went funny or anything like that, it would mean rousing the house to come and help me, which I’d be mortified to do – it’s bad enough having to get someone else to make me cups of tea when I want them, or shifting oxygen tanks around on my whims, let alone getting them out of bed when they’re supposed to be resting.

What I really need to do, I think, is to find something which will keep me happily occupied in bed for a large chunk of the day – a computer game, or internet-linked lap-top or the like.  The problem with all of those options being that I don’t know how long I’m here for and they’re ridiculously extravagent things to entertain me when there’s a perfectly good TV downstairs.

I just can’t get used to spending a day on a sofa, though.  Daytime telly is bad enough (and I still can’t force myself to watch it, no matter how ill I am), but I’m also just not comfy on the sofa all day.  Odd, really, given I’d be quite happy in my bed 24/7 if I had summat to occupy myself with.

This is all one big crazy ramble now, largely caused by the constant fight to keep my withering eye-lids from gluing themselves together and calling it a night, but essentially it comes down to an “answers on a postcard” poser, really.  Any cunning plans for occupying myself whilst enforcing a strict “not out of bed” rule?

I’m determined to get better at listening and – hopefully, one day – pre-empting my body’s mood swings.  I used to be pretty good at it, but I seem to have lost my touch of late.  Here’s hoping it’s not too long before I get it back again…

*That’s not to imply that it is common badger behaviour to watch cricket all night, it was more an inference to nocturnal awakenings.