Wheels

This week has been a bit crazy, which is why I haven't been around these parts much.  It's daft because it's exhausting me, and so ultimately it's counterproductive, but sometimes it's just how things work out.  One of the things I've been doing this week is test-driving WAVs (Wheelchair Accessible Vehicles), doing three test-drives in two different models of car. 

On Tuesday I tried the Renault Kangoo.  The guy from the conversion company - Bill - took the car round the back of the house where my wheelchair access is and I met him in Taz.  He showed me how the ramp worked, and although it was light enough as it was power-assisted, I think it will be too much with the POTS because the bending and standing affects blood pressure, which I don't maintain well at all.  It was quickly decided that I'd need to apply for a grant to cover the cost of a powered ramp (£1200), so that was a very useful thing to discover and discuss.  When the ramp was in place I steered the chair up it and into the car, and then secured it down.  All very easy, especially as I don't need to be in the chair once I'm in the car so I can reverse the chair up the ramp without actually sitting in it, and there's loads of space for the chair both on the ramp and in the car.

Time for the test-drive itself and all started smoothly enough, but a few minutes down the dual carriageway I could hear a kind of clicky flappy sound that I mentioned to Bill.  He said he'd run over something in my street when he was driving the car round the back, and had hoped he'd avoided getting a flat tyre, but now he wasn't so sure.  Only minutes later, whilst caught up in the middle of a load of road works, the car was bouncing and making a pflp pflp pflp noise.  Yup, we had a flat tyre.  I pulled in amongst the road work cones, Bill got out, confirmed the flat tyre, and proceeded to get out the canister of foam stuff that is supposed to fill a flat tyre until you can get to a garage for a new one.  It seems that most new cars don't come with a spare wheel these days, and this was certainly the case with the Kangoo.  Unfortunately, it turned out that the canister didn't have enough foam in it to fill the Kangoo tyre either, so it seemed like we were a bit stuck.  The guys doing the road works (actually, they were gathering the cones in) reversed their truck up the road, parked behind us, and came to see if they could help, having thought that they might be able to change the tyre for us, but of course with no tyre to change they were left just standing looking at the flat tyre that was now partly filled with foam.

The two road works men and Bill stood around for a bit looking at the floppy tyre, and wondering what to do.  Bill then decided to phone his office, which is attached to the garage where they actually make the converted cars they sell.  It's only a few miles away from where we'd broken down, so he asked if someone could come along with a new wheel and fit it to the car.  However, the road work men needed to get on with collecting the cones in, so I had to move the car with it's flappy tyre a little way down the road into a bus stop.  This rather annoyed a bus driver a little later on who thought I'd just parked there for fun.

We waited for what seemed like ages, but it gave me the opportunity to think of questions about the car, try out the radio, discuss grant applications, have a little peek around the car (in a very limited kind of way as I wasn't about to get out and walk amongst the traffic), and then get bored of waiting.  Eventually the bloke from the converters garage arrived with the new wheel and a car-jack.  Bill got out of the car whilst I stayed in it and got tipped up sideways while the garage bloke got the car-jack into place.  This was not the most relaxing situation to be in as I was, by then, being tipped towards the traffic moving speedily past me at rather close quarters as the cones had now all been removed and speed restrictions lifted.  I don't recommend finding yourself in this position if you can help it.

At last the wheel was changed and we could continue on with the test-drive, which only lasted another fifteen minutes or so, but it had taken over an hour and ten minutes to do a twenty five minute (if that) drive by the time we got back.  We sorted Taz, getting him out of the car, and I came back in the flat while Bill drove the car back round to the front.  Just as I was parking Taz back up in the living room I realised that while we were out, the cat had weirdly pooed on the living room floor.  He never does that, and there doesn't seem to have been any reason for him to do so this time either, but it really was not what I needed to come back to.  I swiftly cleared that up and then opened the front door for Bill to come in so we could both have a well-deserved cup of tea while we filled in the Motability assessment form.

Although I was due to test-drive a Citroen Berlingo with a different converter company on Friday, I arranged to do one in a Berlingo with Bill on Saturday as well.  Bill suggested that I speak to Motability in the meantime to discuss the possibility of grants.

So a guy called Phil came with a Berlingo on Friday.  At first glance it seems pretty similar to the Renault Kangoo, but when actually driving it felt different - better acceleration, less like a van and more like a car, a bit quieter, a bit more refined.  I went the same route on this test-drive as I had done on Tuesday.  This time there were no flat tyres, but at almost the exact same spot that Bill and I had got the flat tyre, we got caught up in the almost immediate aftermath of a crash between a car and a small truck, probably because the road works cones were out again and someone wasn't paying attention.  Thankfully the accident didn't look too awful, but several police cars and an ambulance quickly arrived on scene.  We got through the backed-up traffic eventually and continued on with the test-drive without any more events, but it hadn't been a very quick journey.  Anyway, the upshot was that I preferred the Berlingo to the Kangoo, although I didn't like the ramp provided by this converter company as is didn't fold so blocked most of the view out of the back windscreen.  Oh, and this conversion company said that they can't'/don't do powered ramps, so that kind of rules them out of the picture.  Not that I mind very much, because Bill's company is local and I like supporting local business.

Bill came back on Saturday with his Berlingo, which also had three back seats as opposed to only the one in the car that Phil had brought.  Phil had said that the XTR Berlingo (top of the range one that he brought) only came with the one back seat, but one of the things that had originally attracted me to the Berlingo was the possibility of having all three back seats if I wasn't taking Taz.  Well, Bill and I worked out that it would be possible for me to get Taz into the boot of the car and still have two back seats up and able to be used as I wouldn't need any leg space for the wheelchair as I won't be travelling in Taz.  This is a huge advantage.  Also, if the hospital could adapt the fitting of the control panel on Taz so that it swings sideways or slides out of its current position, then I'd be able to have all three back seats of the Berlingo available for passangers or for luggage storage whilst still having Taz in the boot.  It was a tight squeeze, but Taz fit snuggly and safely, and it would mean that on a long journey I could put luggage on the back seats and have really easy access to Taz at any service stations I stop at.  Bill also said that they could fit a bit of carpet onto the ramp for me to stop the metal ramp tapping against the metal back of the wheelchair.

The Berlingo Bill brought on Saturday was a VTR, so the model down from what Phil had brought, but also the model that I'd most likely get funding for as the XTR has an extra £700 advance payment.  Having said that, Bill said that his company are providing the VTR Plus at no extra cost until the end of March, and that has a few little extras which would be nice.

For once, the test-drive went ahead with no dramas - crashes or flat tyres or anything else - and I enjoyed the drive of the Berlingo again.  I think I'm also beginning to get a bit more used to the idea of needing a WAV, so am beginning to be able to enjoy the process of choosing the car.  I've pretty much made up my mind that the Berlingo is the car for me at this time, so the next step is to apply for grants.

I spoke to the grants department at Motability on Friday afternoon, at first, after an initial basic assessment, being told that I wouldn't qualify for financial assistance.  I thought I had explained what I needed, but I obviously wasn't clear enough, because the woman doing the assessment seemed to think that I was asking for assistance for a vehicle that would allow me to drive from my wheelchair.  I don't need that, and I'm not suprised that I don't qualify for financial help for a 'Drive-from' WAV.  After questionining my eligibility for a grant, and working out the misunderstanding, the woman did another initial assessment that indicated that I would most likely be eligible for financial help, although she couldn't give me a definitive answer.  I still have to make the official application, and she sent me the application forms straight away.

I've spent some of today filling in the grant application form, and printing off some of the required accompanying evidence, although I still need to get a letter from my GP and then sort some of the other paperwork.  However, once that's done then I'm pretty much ready to send the forms in, and Bill said that Motability are currently getting through applications quite quickly, so he reckons that I could be getting delivery of my new car by early/mid may.  Obviously I can't place an order for the car until I know what funding I have, but things are now getting sorted and a resurgence of my independence is in sight.

Home again, home again, jiggety jig

I made my escape on Tuesday last week, but haven't got around to posting until now because I've been getting my bearings again and settling back in.  It takes a surprising amount of energy to come out of hospital, especially after two admissions in such quick succession, and no real respite of any kind in between.  Hmmm, come to think of it I should probably retitle this post as 'Home again, home again, floppety flop.'

It's good to be home.  It's good to be surrounded by my own belongings and to have the cat give me cuddles and purrs.  It's good to have my own space and not have an institutional timetable running my life.  It's something of a relief too not to know what my blood pressure is, or my temperature, or my oxygen saturations, or my respiration rate, and it's good not to have to score my pain on a scale of 0-10.  Instead, I live in blissful ignorance of all these things and get on with what I can of living.  The only trouble being that I'm completely knackered and not completely well.  In fact I was back at the GP's on Friday, and in a bid to stave off a resurgance of the bugs he's throwing another week's course of antibiotics at them.  I think they're working, and I'm feeling less lurgified than I was at the end of last week.

Despite all the pleasures of being back at home, I have to admit that I'm struggling a little emotionally.  I think some of this is post-infection and the aftermath of pneumonia, but there's also the whole thing of getting my head around having been so poorly yet again.  It's draining - emotionally and physically.  I am completely worn out, and yet I'm trying to get on with what I can of living, so I'm back at university already (I went back on Thursday), and I've a fairly busy week this week with seeing family (my brother M and his family are coming up for a few days from tomorrow), as well as test-driving a couple of WAVs, sorting out missed hospital appointments, and trying to make time and find the energy for some writing.  It's too much really, and today I have somewhat resembled a heap of misery and grumpiness for most of the day. Actually, I was doing okay first thing, at least I thought I was, although I could feel all the mess not too far below the surface and was trying to ignore it.  Then my mum phoned to see how I was doing and all of a sudden I dissolved into tears and spent the next 45 minutes being a gibbering wreck on her.  Most of the rest of the day has been much the same ever since, only it got a little worse when my carer didn't turn up this evening with no call.  W came to the rescue, came round, and cheered me up just by being here, even though she had to bring her poorly guinea pig with her and he died while they were here :o(  Very sad.

So yes, it's a bit of a mix and I'm rather lacking in jiggety jig, but all in all it is good to be home, and I'll work my way through the emotional debris somehow ... in time.

Getting out

There's a good chance that I'll be going home tomorrow!  Hurrah!  On Saturday the SHO suggested that I aim for home on Monday, but then the registrar came in and said that if I didn't feel ready for home on Monday then I mustn't go.  I haven't felt ready so I haven't gone, and actually I started sneezing again yesterday :o(  I am desperately hoping that this isn't the start of yet another infection that's going to make me bounce back again.  Anyway, with this, and with general recovery, I wasn't right for home today, and when the reg saw me this morning he suggested tomorrow at the earliest.  Then my consultant came round and he clearly didn't think today was a good day for me to go home, and even seemed slightly surprised at the suggestion of tomorrow, but I'm hopeful.  Mind you, Dr H wants me to give another sputum sample before I go as he wasn't totally satisfied that the pneumonia bugs aren't creeping back from what he's seen that I'm coughing up.  I know that if I'm not right tomorrow then I mustn't go home despite how desperate I am to do so, but I think I should be okay.  I'm crossing everything.

I've been for a couple of trundles off the ward the last few evenings that W has been in.  Twice we've done a circuit of the outside of the hospital buildings (still within the hospital grounds), but this evening we got up to mischief.  This evening we went to the park across the road from the hospital, stopping on the way over at W's car where we picked up the fireworks we've been storing up since November :oD  We'd bought the more expensive ones this year, and we could really tell the difference from the cheap ones we've had in the past.  For starters they lit so much easier, but more importantly, the fireworks themselves were bigger, the bangs louder, and they were generally more impressive.

We positioned ourselves at the far end of the field directly opposite the hospital, but down the path that runs by the side of the field so that we didn't have all the lights from the passing cars shining directly onto us.  We then unpacked the first box of fireworks.

One by one, W set them off, and here are a few photos of some of them:

We, or rather W, soon learnt that she'd need to light the fireworks from a further distance than we've done with the cheaper ones in the past as we kept being hit by flying debris, but thankfully none of it was alight.  I had visions of us returning to the ward saying, 'So erm, we've been up to mischief, and whilst I can still breathe, we've both got third degree burns.  Anything you can do to help?' ;o)  Thankfully, the only thing we came away with was the giggle for having been up to so much mischief whilst I'm still a hospital in-patient.

Before we were ready to set off back to the hospital we had one big box of 24 fireworks - one fuse to light and the whole lot went off in a storm.  Here's W with the box just before taking it almost to the middle of the field.

It must have lasted only a matter of twenty seconds or so (if that), but it was spectacular. 

There were more than a few boxes and cartons to tidy away afterwards, and as you see in the second picture below, the box from the set of 24 on one fuse wouldn't fit in the bin.  We're wondering what on earth the council workers will think when they come across the dead fireworks box in the morning.

I wasn't sure whether or not I was going to tell the staff what W and I had been up to, thinking they might then blame any chest-tightness through the night on the fireworks.  I left it a while, but have since told the nurse looking after the patients on my end of the ward what I did on my excursion off the ward.  She thought it was great!  She also said that they could hear the fireworks on the ward and the health care assistant had asked if that was fireworks she could hear.  The nurse had apparently replied, 'I hope so, because otherwise it's a major gangland shooting going on!'  I showed her some of the photos of my and W's antics this evening and as she left my room she said that I'd really cheered her up :o)  The antics really cheered me up too :oD

Not just the wrong pair of trousers

This happened the week before last, during this admission.  I've changed the doctors' names as I've written it for my book, but I thought I'd share it with you as it is all the same.  It may undergo some editing before it makes it into the book, but the facts will remain the same.  I hope you enjoy it.

Not Just The Wrong Pair of Trousers

Dr Samson arrived with his registrar, Peter, and the junior doctor, Yas. The trio arranged themselves around my bed and observed the wheezing form that lay before them.

‘Yas,’ began Dr Samson, ‘seeing as you’re the only one with a stethoscope, can I borrow it, please?’

Yas looked at her seniors and stuck her pen between her teeth while she juggled my bulging volume of notes into her left hand. With her right, she unravelled her stethoscope from where it hung draped around her neck, disentangling it from the plastic apron on which it kept getting snagged. Removing the pen from her mouth, and handing her stethoscope to Dr Samson, she tutted and said, ‘Really, a respiratory doctor coming to work without his stethoscope is like coming to work without your trousers!’

I spluttered a wheezy laugh and, closing my eyes, pinched the bridge of my nose with my thumb and forefinger. With a slow shake of my head I said, ‘You know, I really shouldn’t have that image in my head,’ which triggered giggles in Yas and feet-shuffling from Peter.

Dr Samson abandoned the beginnings of an excuse, instead saying, ‘I suppose that as I’m borrowing your stethoscope I can’t really tell you off,’ but any authority he may have had with this was lost by the increasing redness to his face.

Unable to shake from my mind the image of my asthma consultant arriving in my hospital room in his underwear, I could only try to stifle resurging giggles while he listened to my lungs through my back. But with Yas standing at the end of the bed, it was all too easy to catch her eye and for the ridiculousness of the image to become infectious.

The disastrous consultation eventually came to an end, but with me and Yas caught up in school-girl giggles, Peter not knowing what to do with himself, and Dr Samson slightly flustered and extremely red-faced.

Dr Samson and Yas returned on another ward round visit two days later, the joke having walked right back in the room with them on their arrival. No reference was made to it throughout the consultation until the end, when Dr Samson and Yas were removing their gloves and aprons. I couldn’t resist but acknowledge Dr Samson’s remembrance of his stethoscope that morning by passing the comment, ‘I see you came to work with your trousers this morning.’

The colour shot up Dr Samson’s face and Yas spat out the laughter that had been bubbling within. Dr Samson shuffled out into the corridor with as much dignity as he could muster, whilst Yas left the room bent double and with the two of us giving glances of collusion.

Horrible hodpits

Today has been a miserable day.  A very fed up sort of a day.  Today I have been well and truly stuck in the hodpits.  Physically, things are slowly improving and the consultant is keen to try to get the aminophylline down tomorrow morning.  I don't feel fantastically stable, but I do feel better than when we tried to reduce the aminophylline last Friday, and I've been doing okay the last couple of days on a reduced dose, so hopefully all will go okay.  My lungs feel a bit twitchy and gunky still - more than usual at this stage of things - but it's right that we try to get the aminophylline down and see how things go.  After all, I need to get the drip down before I can begin to think about getting home.

Home is definitely where I need to be heading towards.  I'm so sick of hospital.  I'm sick of being ill and of the relentless nature of it all.  It's months and months since I've been truly well and it's taking it's toll.  I feel like I lose myself to illness ... like I become nothing but illness, with only illness to talk about and only illness playing any part in my life.  The life of illness is not a life, it is existence.  It is the mere getting through each day, but without any other real purpose.  This is why I try to live a real life as much as I can when I can, because we all need purpose and reason and positive things.  I need things other than medicine to keep me ... real. 

Right now I feel like I am a container for disease and decrepitude.  I feel so seperate from all that makes me who I am.  I ought to have started back at university last week, and now I don't know if I'm going to have missed so much that I'm going to have to defer a year.  I worry about that.  It's not what I want to do, but at the same time, I don't want to compromise my chances of success on the course simply because I've been ill - the result would reflect my illness, not me.  I can't do anything about this until I get home and can speak to the course director, but it doesn't stop me from fretting.

I will write.  I have been writing in my head.  I have a couple of bits and pieces floating around in my mind that I want to put down on paper for my book, but I haven't had the brain power to think in a writerly matter.  Writing will keep a bit of me real.  Thinking about the writing keeps that bit of me alive, but I actually need to do it if I'm to sustain the life, and for that to happen I need just a tad more energy.  I'm so exhausted.

When I think of how active I used to be I marvel at myself, not that I was anything marvellous or special, but just that I could do all those things.  In actuality, all I did were the things of normal living, but so many of those things are so far removed from what my life has become that they now seem amazing to me.  I never thought I'd be reduced to lying in a hospital bed, day after day counting the holes in the ceiling tiles, and every day knowing that there'd still be sixteen hundred in each one.  Okay, so I won't be here forever, but I know that when I leave it will only be a temporary departure, and that when I return there will still be sixteen hundred little holes in each ceiling tile, and that when I return I will be back at the beginning of another fight for breath.  If I'm lucky I'll get through it, but it's never without its scars because even each scratch of an interruption in life leaves its mark.

Maybe none of this makes any sense.  Maybe it's all a huge ramble that means nothing to anyone but me.  Maybe I'm just feeling sorry for myself.  Maybe so.  That doesn't matter.  The fact is that I'm miserable, and to be honest, I think it's reasonable that I'm miserable about it all sometimes, and maybe it's even reasonable that I tell you about the misery, after all, you have the choice of whether or not to read it - I don't have the choice of whether or not I experience the things I do.  Yes, I will allow myself to wallow for a while, because sometimes wallowing can be the healthy thing to do.  Wallow then let go knowing that I've given myself permission and the time to feel what needs to be felt.  To misquote Michael Leunig, 'Let it go.  Let it out.  Let it all unravel.  Make it a path on which to travel.' (The Prayer Tree, 1990).

As predicted

I didn't last very long at home after my last post, and as I thought I might, I ended up back on Ward 29 the following day.  I'm still on the ward.  I struggled on at home for as long as I could, but the point at which I decided enough was enough was when I thought that I'd just have a rest from what I was doing and sit on the sofa for a bit while I caught my breath, only to realise that all I was in fact doing was sitting on the sofa doing nothing but thinking, 'Gosh, this is hard work.'  I phoned my vicar to see if he knew of anyone who might be able to take me to the Freeman, and then phoned J on the ward.  Thankfully J had a bed for me and the vicar easily managed to find someone to bring me up to the hospital as lots of people were gathered praying for me.

I've been pretty ill.  It turned out that I'd picked up streptococcus pneumonia just before I was discharged from my previous admission, and of course anything that effects the lungs is liable to set off my asthma.  I've been on the aminophylline infusion and the oxygen since I came in, and I was on IV antibiotics for several days before being changed onto orals.  These were stopped yesterday as I have been getting bad tummy pains, which have most likely been caused by the antibiotics, and indeed the cramps have lessened somewhat since stopping them.  I'm still getting quite uncomfortable at times, and needing pain killers, but the pain certainly isn't as bad as it was yesterday or the day before.

We tried reducing the aminophylline on Friday, which I thought was a tad premature as I still didn't feel steady, but the consultant was eager to give it a go.  We did.  It didn't work.  After a few hours at a reduced dose my chest was very tight and wheezy again and I felt like I was beginning to really struggle once more.  I was already totally exhausted as I haven't been able to have my usual big sleep this time, I think because the chest tightness and wheeze has been so long and protracted, and I was coughing so much too at the beginning of the admission.  Anyway, the infusion was put back to full rate on Friday evening and stayed there till today.  It's been reduced again this afternoon, and although I can feel a difference I don't feel dreadful so that's improvement I guess.  I'm nervous though, and getting through the night without 'events' will be the big test.

I hadn't had time between admissions to deflate from the horrid water retention, and of course it's only got worse with this admission.  However, this time I have been put on big doses of furosemide, which has helped somewhat although I'm still whale-like and hating that.  Speaking of whales, I've become even more like one as I've developed a barnacle problem in my mouth.  Well, the doctors call it oral thrush, but I'm convinced it's barnacles ;o)

Did I tell you that last time I was in I had a dream that I had to pour custard into my ears?  In this dream it was very important that I pour custard in my ears and it was very important that I do it correctly.  In my dream I succeeded, and it seems that the dream was almost prophetic!  Not that I've actually gone and poured custard in my ears, but I did go almost completely deaf in my right ear and partially deaf in my left ear, and it felt like they were full of custard.  It turns out that streptococcus pneumonia bugs can cause ear infections as well as lung infections so the deafness and creaking in my ears has probably been that, but I remain resolute that I have custard in my ears and barnacles in my mouth ;o)  Actually, the custard is dissipating now and I can hear better again, and the barnacles have been helped by a course of fluconazole, but that finished today and my mouth isn't quite better :o(

All in all it's been a horrible time, and for all that I'm much better now than I was when I came in, it's felt like a terribly long haul with one thing after another.  I'm also completely whacked.  This is the first time I've had the computer out and it's totally exhausting.  The nurses have said it'll probably take me six to eight weeks to get my full strength back ... just in time for another admission then, most likely :o(  Still, I'm not thinking about that.  What's important at the moment is to get better from this round of fight, and then to get home.  How I long to be home, and stay there!