A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Sunday, 26 December 2010

Sticky and slippy

Way back in the mist of time, before the first Ice Age... Oh okay then, it wasn't all that long ago, and it wasn't the Ice Age as such, it was a month or so ago, and before the first lot of very cold weather this winter, but you get the picture - it seems like ages ago, and it seems as though this snowiness and iciness has been going on forever. Anyway, what was I saying? Yeah, right, well, I made crab apple jelly! Not only that, but I used the crab apples from the crab apple tree in my front garden (aka little patch of mud). And not only that, but it's a crab apple tree that I planted myself a few years back, and it had been a scrappy little thing I'd bought from the 'almost discarded' section of the garden centre. So the process began with the picking of the apples. I took the washing up bowl out to put them in, but there was so much fruit that there was still a fair amount left on the tree even after filling the washing up bowl with the little apples! The recipe was for 4lbs of fruit. I had 13lbs!

I was surprised at how mucky my hands were after picking the fruit as I don't put anything like pesticides or fungicides on the tree, so it must all have been 'natural' dirt and probably car fumes from the traffic on the relatively major road nearby. Needless to say, I decided that the fruit needed a very thorough clean before I started following Mrs Beeton's recipe for crab apple jelly, but once it was washed (and soaped!) and as clean as could be I divided the fruit up into portions of the correct weight for the recipe, and soon saw that I was going to be doing several batches of it. So here's a pic of one batch of the fruit:

Next came the cutting of the tiny apples, and throwing them in a pan with the water and spices:

And boiling them up until they were soft:

Then straining them to get all the lovely juiciness that would (hopefully) become the jelly:
And then boiling up, and trying not to burn, those lovely juices to thicken up:
Now, unfortunately, Mrs Beeton isn't too descriptive in her instructions for when the loveliness is ready to be put into jars, and just says it's ready 'when it sets quickly on a cold plate.' That's all very well, but what is the definition of quickly? I dunno. I still don't know, but I decided 30 seconds to a minute was probably about right, so after much testing I eventually got bored and decided it was ready. I ladelled it into jars, managing to get a fair bit of stickiness on the benches and around the kitchen, and most definitely over all the jars, some of which are still sticky despite the many wiping downs they've had. And after several repetitions of the whole process this was the product of my labour:

I have to say that I was rather impressed with myself, and more than a little surprised that it had all worked out. Not only that, but when I eventually got around to tasting it I discovered it was rather lovely! It goes amazingly well with a strong cheddar cheese, and it was also quite scrummy with the completely made up lentil loaf thingumy that I made for Christmas lunch with W on 17th December (we had an early Christmas together with lunch and a trip to the panto, which was all great fun). What's more, the jelly doesn't only taste scrummy, but it doesn't dribble all over the plate - it's actually jellified! Of course there was far too much crab apple jelly for me to get through so I've been giving jars of it away, and I brought some up to Edinburgh with me where I've been having Christmas with Mum and J.
I came up to Edinburgh on Thursday. Driving. In the snow. It was quite possibly the scariest drive of my life. For any of you who know the A1 north of Newcastle, you'll know that the vast majority of it is single carriage way. It's also now in a terrible state from the freezing temperatures that have wrecked the tarmac and created huge crevasse-like potholes. It's quite something to negotiate these craters, and I'm sure that they could cause a serious accident if a wheel got caught in them at just the wrong angle. So I was trying to avoid these, but at the same time I was having to concentrate hard as I was periodically engulfed in blizzards of snow that reduced visibility considerably, but which didn't deter some maniac drivers from getting right on my tail. My strategy when this happens is always to slow down. I know this may well frustrate the driver behind me even more, but to be honest, if I'm going to be smashed into I want it to be as low an impact as possible.
Then there was the slush and ice. Various stretches of road had been cleared by snow ploughs, but certainly not all, or by any means most. I followed the tyre tracks from the traffic ahead of me as much as possible, but this didn't stop me from occasionally sliding on the slush, and on three occasions I gently skated onto the other side of the road, unable to do anything about it until my car tyres found a bit of tarmac to grip onto again. Amazingly, each time I slid that far over the raod there wasn't any on-coming traffic so avoided a head-on collision and probable death. The road was generally quite busy - the 23rd December being the busiest day of the year for road traffic, apparently - so it surely was that God was watching over me while I travelled north that meant that on each of my excursions to the wrong side of the road there was nothing coming. The whole journey really was quite terrifying and I was exhausted by the time I got here.
I made it to Edinburgh and to my parents' house, and we have been having a lovely, quiet, gentle Christmas together, with an abundance of food (including some of my crab apple jelly) and an abundance of presents. It's wonderful. Neither my mum nor my step-dad are Christians (Mum's a hybrid of agnostic-atheist, whilst J is a committed atheist), but we did all go to the Nine Lessons and Carols service at St. Mary's Episcopalian Cathedral, where they both enjoyed the music, and I enjoyed the music and the joy of the true meaning of Christmas.
I hope you have all had a lovely Christmas and a peaceful time with family and friends. Happy Christmas, all!

Saturday, 11 December 2010

Escape route

It's been a wee bit chilly recently. You may have noticed. The two to three feet of snow was the give-away. Oh, and the icicles, which my neighbour knocked down in case they speared someone through the head whilst they stood at the front door. That was probably a good thing, although I was rather enjoying their loveliness, and amazed at the speed at which they were growing. They're gone now, as have the mountains of snow, because of the tropical temperatures we've had over the past two days. It's reached the amazing heights of 6C ! That's a whole 17 C higher than it was only a few days ago! Mind you, we're told to expect more chilliness and brrr-y weather next week.

It has to be said that I'm not a fan of the cold, and it does nothing for my lungs. They tend to seize up and complain, a bit like the rest of country when it snows, I suppose. Anyway, they didn't have a lot of opportunity for seizing up in the cold over the past couple of weeks as most of the time I was trapped in the house. This was in part due to the fact that I managed, somehow, to pick up yet another chest infection. I wasn't sure which way it was going to go, and it was looking increasingly like I was going to find myself slipping towards the Freeman again, but with the aid of domestos-strength co-amoxiclav and cillit bang-strength ciprofloxacin (both antibiotics) it looks like I've escaped hospital this time. Hurrah! I'm very tired still, and not up to doing very much, but at least that makes me sit still and get on with some catch-up OU work.

The other reason my lungs haven't had much opportunity to seize up because of the cold is that I haven't actually been able to get out into the cold very much. My electric wheelchair can't get through the snow, as I discovered a couple of weeks ago. I needed to go to the shops, so I wrapped up warm and set off out the backdoor (where the wheelchair access to my flat is), only to get stuck at the bottom of the ramp, three feet from the door. I tried going forwards, but got nowhere so I tried going backwards. I crashed into the wall and then got stuck again. I managed to slide a couple of inches forward once more, only to get trapped in the snow once more, and find that I was then well and truly stuck with wheels spinning but not gripping onto anything, and the kerb-climber getting completely wedged in the mountain of snow ahead of me. Luckily I was right beside the shed box and remembered that the padlock was merely an inelegant ornament, so I reached sideways, heaved the lid with it's weighty foot of snow on top, rummaged with one hand amid the paraphernalia, managing to avoid slicing my hand on the mitre saw that lurks somewhere in the depths of the box, and pulled out my spade. That was enough to get the old breathing bags complaining, but sitting out in the snow and -11 C temperatures was going to make things a whole lot worse, so I got stuck in to digging myself out. Not an easy task when you're stuck between a shed box, a wall, the side rails of a ramp, and a mountain of snow, but half an hour later I made it the three feet back to the door and was safely inside again. Great. Except that it made me realise that I was pretty much trapped in the house, possibly for the duration of the winter. However, the following evening W came to the rescue and dug me a path all the way from the bottom of the ramp to the back gate. Hurrah! I could go out! I could be part of the outside world!

I decided to make use of my escape route the next day, so once again got all wrapped up and set out to the shops and the post office. No problem getting out the back door. No problem getting through the back yard. Big problem once I got to the back lane. Two feet of snow covered the lane and Taz (electric wheelchair) had no chance of getting through it. I tentatively tried to go forward, but not having my spade to hand I was wary of going too far, which is a good thing as my front wheels very quickly got very stuck. Thankfully, the chair is powered through the back wheels and they were still able to get enough of a grip on a small speck of concrete that W had unearthed (unsnowed) to allow me to reverse. Full of disappointment I trundled back inside.

You'll know by now that I'm not one to be easily defeated, and this situation was no exception, so after sitting a little despondently for a couple of minutes in the middle of the kitchen I got the long-handled broom from the kitchen cupboard. Brush in hand I left the house again, whizzing through the backyard and stopping just before I got stuck in the lane. I started to try to clear a path up the back lane with the brush, but I didn't get very far, and decided that I'd have to get the spade instead. I returned to the house once again, dumping my bag because I figured that I may be sometime on this mission I was on, got the spade, scooted back to the lane and set to work shovelling a path through the snow. I made slow progress clearing the bit of road in front of me like a snow plough, moving myself forward as I went, but progress it was, albeit hard work and hot work. Being the stubborn sort I was determined to get to the shops, even though this meant clearing a path through the snow for 200-300 meters. I did around 50 meters before my arms were aching from the weight of the shovel and I was getting a tad warm (not to mention a wee bit short of breath and tight-chested), so I sat back for a breather (aka wheeze), just as a car passed by the top of the lane along the lane that runs at right angles. A few minutes later, just after I'd got back to snow-clearing, the car reversed and a woman in the passenger seat asked if I was okay or if I needed any help. I said that I was okay, but if they had any time, even a few minutes of help would be great. The woman got out of the car and lit up a fag, the daughter who was about 10 started scraping away some of the snow with her welly-booted feet, and the dad got a shovel out of the car and set to clearing my path for me. He made much more rapid progress than I had been making, and although I'd been planning on joining in with snow-clearing, I couldn't get to the bit that needed doing as this lovely man was directly in front of me. The woman took my spade from me and with a half-hearted effort moved a bit of snow around in front of the man, then stood back, smoked more of her cigarette, and watched her husband build up a sweat as he worked hard clearing the snow. I decided that there really wasn't any point in having my shovel out as I could no longer get to where it was needed, and the woman obviously wasn't going to use it (although she was very nice, chatted, and was the one who had originally asked me if I was okay), so I took the spade back inside and picked up my keys and shopping bag again.

As I arrived back in the lane the lovely man was joined by the estate agent from up the road. She'd got her enormous snow shovel from her car and was helping clear the snow. They'd got to the junction of the two back lanes, and although some of the base snow was compacted into ice (though the top snow was still too soft and deep for me to pass), they pressed on valiantly. Sue, the estate agent, then had to go as she had an appointment to get to, so she went off and the lovely man was left on his own again ... but not for long, because within minutes two lads who I think were students, came dashing out of their upstairs flat, from where they'd seen me out of the window. They were both wearing jeans and t-shirt, but also both brandished big shovels and big smiles, and immediately got stuck into the snow-clearing activity. The lovely man must have been exhausted by this time, having cleared 150 meters or so of snow for me, and he'd been beginning to wilt, but he seemed to get a new burst of energy from the appearance of these jolly student-types. Between them they got to the end of the lane within minutes, and saw me up the dropped kerb (once they'd located it under the snow) and onto the pavement. The lovely man left. Thankfully the student-type lads turned round to check I was okay before they headed back inside, because I promptly got stuck in the snow on the pavement. The lads leaped back into action, and dug a path for me through to the council-cleared section of pavement. I was able to get on my way and go to the post office, but I am ever so ever so grateful to my good Samaritans.

It snowed again that night. Heavily. My escape route was covered over and once again impassable. Still, I'd made it out, posted what I'd needed to post, and got some milk. The snow couldn't go on forever, surely. Hmm, well it soon felt as though it was going on forever, and I was becoming unwell so would need to find a way out once again to get to the doctor. I didn't have the strength to start digging through another couple of feet of the white stuff, so I sat and I thought. And I thought and I sat. And I came up with the idea of phoning the council to see if they could help. The woman in the council offices was very kind, but also very apologetic - they wouldn't be able to help as they usually would because the snow was so bad that all their resources were being taken up by clearing the roads and making sure the main routes to the hospitals and the main shopping areas were snow-free. Oh. Okay. I understood, and it wasn't her fault so there was no point in getting frustrated with her. I decided I'd sit tight and see what happened over the next day or two, but what happened was that the sky continued to fall in and the pond life in my lungs were taking more of a hold. I really did have to get out and get to the doctor.

I'd left it the weekend to see how things were going to pan out, but by Monday evening I could feel things getting a fair bit worse, so somewhere around 6pm I emailed Greg Stone, my Lib Dem councillor. I explained my situation, I said that I understood that the council had to prioritise roads and main shopping areas, but that I'd much rather see my own GP as soon as possible than end up in yet another life-threatening situation. I also pointed out that I'm 36 and need to be able to live a life beyond the walls of my flat, and that there's no way I can spend the whole of the winter shut indoors if the snow is set to stay with us till then. Within an hour Mr Stone had rung me back, saying that he was concerned to hear about my situation and that he'd get straight onto the case. At 8.30 the following morning two council workmen were at my back door with shovels, digging me another escape route all the way up to the local shops. They came knocking on my front door when they were finished, which wasn't until around 11am as they'd done an amazingly thorough job, getting right the way down to the tarmac, and ensured that the path was plenty wide enough for the wheelchair. They'd also gritted the whole lot to minimise any refreezing if it snowed again. I wanted to offer them a cuppa, but after apologising for the quality of the grit (!!!), and saying just to call if I need their help again, they were on their way.

There are some lovely people in the world, and all the good Samaritans who have helped get me through the snow deserve medals.

Saturday, 27 November 2010


First of all I need to apologise for my long absense. I'm okay. I've been rather busy trying to catch up with my OU studies whilst starting my post grad studies at Newcastle University. In the past 10 days I've done six and a half weeks worth of OU work and written one and a half assignments. I've still a lot to do, but I'm getting there now.

So anyway, I realise that I owe you a story about a spider. It's from when I was in hospital the time before last.

The night before the spider event occurred I had a strange experience. I woke up several times through the night, and on each occasion I checked the time. The first time it was 1am. The second time it was 4am. The third time it was 6am. The fourth time it was 5.30am :oO Weird. The next night I told one of the nurses - R - about it and she said, 'Nooo, don't tell me that. I won't be able to come back in here now - it's too scary.' She then told me of several strange things that she's seen in the hospital over the years and that they all freaked her out.

A couple of hours later, when most were asleep but I hadn't been able to, R came rushing into my room.
'There's an enormous spider in the corridor and we don't know what to do!'
'You're not too scared to be in my room?'
'No. The spider is scarier. It's enoooooormous. We don't know what to do.'
'Um, put a cup over it, slide a piece of paper underneath the cup, scoop it up and put it out of the window.'
'We've put a cup over it, but we can't put any paper underneath.'
'Why not?'
'I'm can't touch it, D's too scared, and L isn't going anywhere near it.'

They were stuck. I was still attached to the aminophylline infusion and the oxygen, but all the same I could see that I was their only hope, so I gathered up my oxygen tubing and unpluged the infusion pump (it can run on battery for a couple of hours). I made it a couple of feet from the door before being stopped in my tracks by reaching the end of the oxygen tubing. I had no option but to do without the oxygen in order to save the nurses from the enormous spider that was terrorising them in the corridor.

I steeled myself for the encounter with Aragog that awaited me. I stepped out into the corridor, whereupon I saw the upturned cup concealing Aragog between my room and the nurses' station. I asked for a sheet of paper, then approached the cup brandishing the 'weapon'. I carefully slid the paper underneath the cup, stood up, and then wondered how I was going to carry the spider-containing cup to the window whilst still attached to the drip as I needed one hand to pull that along. I asked R for help.
'Noooo. I'm not going near the spider.
'I can't get rid of the spider if I can't get to the window.'
R conceded, although kept at full stretch of the drip line, and we made our way back to my room and to the window. After R flung the window open at arm's length, with a look of utter fear at seeing the enormous spider again, I removed the cup. I was faced with Aragog. I'd been expecting something of giant proportions. Aragog turned out to be about the size of a £1 coin.
'Honestly, R, that's not enormous.'
'Yes it is. Get rid of it. Please get rid of it.'
I shook the cup and paper and out fell Aragog.
'You do realise that we're on the 4th floor, R, don't you? The spider's probably just fallen to it's death.'
'I don't care. At least it's gone.'
I was getting rather out of breath by this stage due to the activity and lack of supplimental oxygen. R suddenly realised this and went back from terrified spider-hater to nurse. I was shuffled back to bed and had the oxygen put back on my face, whereupon I handed the cup and paper back to R, who was very reluctant to touch anything that Aragog had been near, but she did eventually take them from me, albeit holding them very tentatively.

A little while letter I was settling back down and not far from sleep when R came rushing back into the room.
'Oh no! I've just thought; the spider will probably come to haunt you!'
'The spider's probably dead. Your room must be haunted because of what happened with the clock last night. The spider will come back!'
'I doubt it. I don't think spiders haunt people.'
'How do you know? I bet they do. I'm not coming back in here.
'Um. Okay...'
R left. I went to sleep. I never was haunted by Aragog.

Sunday, 14 November 2010

A quick visit

This is a quick visit to my blog during a quick visit to London. I'm visiting my brother and his family :o) I was supposed to have been at a one-day conference on 'Conflict in Children's Literature' at Roehampton University yesterday, but I knew that I wasn't going to have the energy for that so very reluctantly had to cancel my plans to attend. I'd been looking forward to it for months, but there's no way that I'd have managed with my energy levels as they are at the moment. However, I didn't want to cancel all my plans to come to London and stay with my brother, sister-in-law, and two gorgeous nephews, so that is where I am. It's my brother's 40th birthday on Monday, so we've had a bit of a celebratory day today with present time, and cake with candles at dinner time. My sister-in-law, N, and my older nephew, O, started making the cake yesterday, with the intention of making a car-shaped cake, but not being used to using wholemeal flour (to make the cake Aunty Becky-friendly), N didn't add quite enough liquid in the recipe and it all turned out a bit crumbly. Oops. Undeterred, the remains of the cake were put aside until today, when N and O had a go at adapting the car cake, mixed the crumbs with lots of whipped cream, put the remaining pieces of cake into a rough car-shape on top of the cream/crumb mix, piped freshly whipped cream onto the top to indicate wheels, lights, and windows, and hey presto, a scrummy car cake :o) It didn't taste anything like cars, though ... not that I've ever tried eating a car...

A couple of weeks ago, while I was in hospital, my older nephew, O, had chicken pox while the family were away in France. O is fine now, and it seemed as though my younger nephew, D, had somehow managed to escape catching chicken pox from his big brother. I had a bit of a dilemma before my visit as it could potentially be very dangerous for me to get chicken pox because of being on high dose prednisolone. I wasn't sure whether to risk coming or not, when it seemed that D would most likely get ill, even though he was so far okay. I spoke to a couple of friends who are GPs to ask for advice, and they both said that I should probably postpone my trip south. I was reluctant to do so, though knew that I would if it was really necessary, but first of all I decided to speak to my asthma consultant and see what he thought. I phoned his secretary on Wednesday, but it turned out that Dr H was away on annual leave last week, so explained my situation to the secretary who'd asked if any of the other consultants could help. Just as I was telling her about the chicken pox situation, one of the other consultants I know very well (in fact I've known him since he was a new registrar) came into the office so I spoke to Dr DS, who said that I should be safe enough as I had chicken pox as a child. Hurrah! The trip was on! And anyway, it seemed as though the M, N, O, and D household was chicken pox-free so it was all only precautionary in the first place :oD ... except that when we got up on Saturday morning it appeared that D hadn't escaped the affliction and was definitely a little bit spotty. Today there has been absolutely no doubt about it - he is a spot fest. He's mostly okay in himself, but he's very itchy and that gets him miserable. And now I feel a little, um, er, irresponsible. Perhaps I shouldn't have come. Even though I had reassurance from Dr DS that I ought to be okay, I do wonder if maybe I ought not to have put myself at potential risk :o/ I'm loving being here, and loving seeing all the family - especially the boys :o) - but have I done a stupid thing? I'm not sure. I don't know whether I should contact my GP when I get home or just wait and see if anything happens, which it probably won't, but I definitely don't want it to either. Hmmm. Am I daft? Have I been stupid? I fear the answer maybe yes ... It has been wonderful, though, to see O and D (and M and N too), and I don't want to go home tomorrow.

Friday, 5 November 2010

Take two

I'm home. I got home early evening on Monday. I'm going to try to stay at home for longer than a week this time. So far the signs are good :o) I'm tired, and I get tired easily, but that's only to be expected given how poorly I've been and that I've spent the best part of six weeks in bed in hospital. Of course, being me, I've tried to jump straight back into life, albeit at a slightly slower pace.

After my cataract surgery my glasses prescription has changed quite significantly so that my current glasses are fairly useless. They're better than nothing, I suppose, but not terribly helpful, so the first thing I wanted to upon my escape from hospital was go to the optician for a sight test and to order new glasses. I went on Tuesday. While I was there I thought I'd ask the optician why the ophthalmologist had decided to make me short sighted in the left eye but keep me long sighted in the right eye - why not try to make my vision 20/20 (6/6)? The optician didn't know and couldn't explain. In fact, she seemed a little puzzled. She seemed even more puzzled that the ophthalmologist has not only made me short sighted in my left eye, but has made my overall vision worse with the lens implants he's put in. On the upside, as I no longer have natural lenses in my eyes then my glasses prescription is unlikely to change very much over the years, unless I develop fibrosis, which apparently is very likely because of the cataract surgery, although I was reassured that this is easily rectified with laser treatment. Anyway, I digress. Having had the sight test then began the awful process of having to choose new frames. I like having new glasses, but I hate the choosing of frames, partly because when you're trying the display frames on you can hardly see what it is you're trying on as they don't have prescription lenses in (of course!); partly because there's so much choice, yet often it's a case of finding what's nice amongst what I wouldn't be seen dead in; partly because whatever I choose is going to become part of my everyday appearance for at least the next year and probably longer; and partly because I'm often not very good at decision anyway. Dispensing opticians can be helpful in the decision making process, but they don't know you, and sometimes steer you towards frames they'd wear themselves rather than what you'd wear. Take the last time I was choosing glasses: I ended up having to gently ask if there was anyone else who could help me as the woman I had was 'suggesting' frames that were pink diamante things, which anyone who knows me will tell you is just not me - I don't 'do' pink, for starters - and most likely anyone who takes a minute to glance at me could probably tell as well. Thankfully, there were no such problems on this occasion, but it can be luck of the draw. So last time it took me two whole hours to choose frames! This time only an hour and a half ;o) I went for the two for one offer so that I can get one pair with reactor light lenses for driving, and also have two completely different styles to wear. The first pair I've chosen are these (in brown, not purple), and the second pair are these (in brown/green, not black/pink). Having bought them, I've now realised that one of my friends has the second pair in the black/pink combination, so that might be a bit odd, but I've warned her and we'll just have to live with it now. R, I'm not cloning you, honest ;oP I can't wait to get my new glasses because I soooo want to be able to see properly, and it won't be until I get the glasses that I'll realise the full benefit of the cataract surgery. I'm collecting them at 11.30 on Tuesday morning. The opticians can do single vision distance lenses in an hour, but I have varifocals, which take at least a week, usually ten days. I asked them if they could priorities my prescription given how useless my current glasses are to me, and they agreed to have them done by Tuesday - exactly a week :o)

The next thing I did was to test-drive a car! I have a motability car (no adaptations though), which means that I get a new car every three years. I can hardly believe that it'll be three years in January since I got my current car, but it will be so it's time to be looking for a new one and deciding if I want to stick with the same that I've had or go for a change. I've decided to go for a change. I've enjoyed the Nissan Note that I've got at the moment, but one thing that would be useful is a bigger boot as I can't actually fit my either wheelchair in the boot of this car. I can't afford a car that's big enough to take my electric wheelchair, but at the moment, even my manual/attendant assisted is having to go in the back behind the passenger seat.

I'm the kind of person who likes to do a lot of research into all the affordable possibilities before making a decision on a substantial purchase, often checking things out with Which? or their equivalent - in this case What Car? After a fair amount of deliberation and assessment of finances I decided that I'd like to have a closer look at the Vauxhall New Meriva so I booked a test-drive. I liked it. I liked it a lot. I ended up putting an order in. I've gone for the SE model 1.4litre 120bhp in Pepper Dust, with the 'sight and light' package (automatic lights and windscreen wipers). I'm also paying extra for a spare wheel because they don't come as standard (it comes with a tyre self-inflation kit instead) and after the tyre pop I had earlier this year I'm a little wary of not having a spare wheel. Those costs add up, but it's worth it. I won't get my new car until the end of January/beginning of February as that's when the lease on my current car runs out, but when the guy at the dealership looked at the computer he saw that there weren't actually any cars already built to my specifications so one is going to be built especially for me! How cool is that?! So now I have three months to get ridiculously excited about getting a new car, and I'll probably bore you silly with excitement between now and the end of January ;o)

Right-e-o, I'd better be off as W has just arrived and my step-mum is bringing my dad round imminently so that the three of us can go to a fireworks display at Segedunum. I like fireworks and didn't get to a display last year because I was in hospital, although W and I did our own display on the town moor earlier this year, which we'd postponed from last bonfire night. We had so much fun on the moor that we're actually going to do the same thing again, probably on 8th December after we've been to 'Wind in the Willows' at Northern Stage. It should be a fun day.

Saturday, 30 October 2010

Extreme wheelchairing

My dad has Lewy Body Dementia, but when I'm at the getting-lots-better stage of hospital admissions he often takes me out in my wheelchair for a breath of fresh air and general escape from the ward. However, this is quite an experience and something I've termed Extreme Wheelchairing.

On Thursday Dad took me to Paddy Freemans - the park directly opposite the hospital. I very nearly ended up in the pond. Dad was watching the ducks as he was pushing me along and he forgot not to steer me in the direction he was looking so I was rapidly heading towards the 'steps' that circle the pond. I was holding onto the oxygen cylinder so grabbing the breaks wasn't an easy task, and a certain amount of breath was used in raising my voice in a desperate kind of way until Dad realised where he was pushing me. I survived that only to have him nearly push me off the edge of the cliff into Jesmond Dene below. He was showing me the view, which was lovely (although I've seen it many times before I never tire of it), but I didn't want to become a part of that view. Again, there was a degree of desperation in my exclamation as my front wheels teetered over the edge of the cliff.

I went extreme wheelchairing again yesterday, but only within the hospital. We managed to take out a lady in the lift, which was rather mean as she had a chest drain in so can't have been feeling all that grand to start with. Dad then took me to the little coffee shop in the hospital W H Smith, which is the most wheelchair-unfriendly shop in the world with narrow aisles that the staff insist on making more impossibly narrow with boxes of things that ought to go on the shelves but they never get around to unpacking. It's horrendous. So we crashed into the crips aisle, ran over a woman in the random slippers and dog food (!!!) aisle, couldn't get down the magazine aisle, though that didn't stop Dad from trying, and smashed our way through to the till and coffee shop area, managing to swipe a hairbrush off the shelf with my wheel and not realising until I felt it as I tried to grab the breaks (almost dropping the oxygen cylinder in the process) as we crushed a bloke sitting at one of the coffee tables. Upon leaving, Dad tried to push me through a table and a chair until I suggested that he leave them in the shop and not push them all the way down the corridor in front of us - he just hadn't seen that they were there and attached to me. We came back to the ward relatively uneventfully, except for the close acquantance I made with the wall beside the huge double doors that were open but Dad still couldn't easily negotiate his way through, and a small crash into a porter with a wheelchair.

It really is quite an experience having someone with moderate dementia take you out in a wheelchair.

Thursday, 28 October 2010

Hospital Use Only

I didn't last long at home. One week exactly, that's all, and a strange week it was too. I went to a concert by Northern Sinfonia at the Sage Gateshead on the Saturday after I was discharged and picked up a cold from one of the many congested people in the audience. I could feel it scratching away in my throat by Sunday evening. By Monday I was beginning to cough and felt the bugs clawing their way south to my lungs. on the Tuesday I had to go and have bloods done at the GP surgery to rule out diabetes or thyroid problems as the cause of the neuropathy in my hands. I had a rubbish night on Tuesday with coughing, but nonetheless went to RVI on Wednesday morning for cataract surgery on my left eye. I expected them to turn me away because of my cold and cough, but the surgeon just said, 'Let me know before you're going to cough so I have time to pull the instruments away'!! I duly obliged - I didn't want to be his first accidental brain surgery patient, however good an eye surgeon he is. Fifteen minutes out of surgery and back on the day ward, with hardly time to feel relief that the operation was over, I had a call on my mobile from my GP. The blood tests I'd had the previous day showed I was 'dangerously hypernatraemic' with a sodium level of 152.
'Okay ... what do I do?'
'I don't know. We don't usually see levels this high. I'm going to call the hospital for advice. Are you feeling ill in any other way?'
'Um, yes, well it's hard to say because I'm full of cold and it's going to my chest so my breathing isn't that great, and I'm literally just out of cataract surgery.'
A moment's silence.
'Right. Okay. I'm going to phone the hospital and I'll call back soon.'
'... Okay ... is there anything I should do with my diet?'
'No, that won't make any difference.'
End of call. Anxiety sets in. I come to the conclusion that it's not a good sign when your GP phones you in a panic with no real idea of what to do.

She rang back five minutes later saying the hospital advise urgent repeat blood tests, and she'd made me an appointment for 4.30pm. so then I had to make sure I could leave the hospital to get to the GP surgery in time so had to tell the nurse on the day ward what was happening. That sent them into a bit of a spin, but also meant I got my eye drops prescription quickly and could leave. I'd texted my mum and step-dad (J) to tell them about the call from the doctor and then the appointment, and they came up to the hospital straight away. We went home and then a little under an hour later I was having my bloods redone. And then a bit of an anxious evening as I wondered what was going to happen.

...And then my cough changed to a really fruity rattle and rasp, and overnight the wheeze set in. It was a terrible night with very little sleep, and although I had an appointment booked with the GP for the following morning, I knew I wouldn't last that long so called the surgery, got an appointment for 10.10am that day (Thursday) and reluctantly checked and replenished supplies in my hospital suitcase. J drove me the four streets to the surgery and waited in the car.

The GP I saw has her room directly at the end of the corridor from the waiting room and she had her door open as I made my way towards her. She waved to me and gently said, 'Bad day?' I wheezed a yes, sat down and she closed the door behind me. She called the ambulance before she even got her stethoscope out, then stuck me on a nebuliser even though I'd just had one at home. I shed a few tears at her mention of hospital although I'd known it was coming. I just didn't have the mental or physical energy for this, and I hardly felt like I'd had any time free from hospital. She was gentle. She sympathised. There wasn't much more to be done. The rapid response paramedic came, closely followed by the ambulance crew. In the meantime I texted J to let him know what was happening, he phoned Mum then came into the surgery, and one of the other doctors - my usual - popped in to see what was happening and said, as if it were a normal occurrence (which it kind of is), 'Ah, you've got Becky G in here.' He gave me a gentle smile and left as the other GP came back in with a letter for the hospital and an update for the paramedics. We left the surgery and I was scooted off to A&E on blues and twos.

A&E was heaving. Mum said the waiting room was chock-a-block and people were lining the corridor on trolleys and chairs. I was in resus, where there were four beds but five patients - a RTC victim and another asthmatic having to take turns in the bed space next to me! Thirteen 5mg salbutamol nebs and several 500mcg ipratropium nebs later, and the starting of an aminophylline infusion, and I wasn't really any better, but after five hours I'd breached the four hour national treatment time target for A&E so was whisked off to the Emergency Assessment Unit (EAU) at RVI by two paramedics and a nurse escort.

EAU was heaving too, with a very disoriented and distressed old lady with dementia running around searching for someone called Maureen, and the nurses having to try to contain her when they were short-staffed to begin with. the doctors were busy too and really slow of the mark with me, so while the nurses were doing their best with the demented lady and seven other poorly patients in 'monitoring' (as well as other patients in the unit), they were also trying to keep a watchful eye on me and could see that I was deteriorating. They called ITU outreach to come and see me. Then the junior EAU doctor came to see me and he called the registrar, who came and put his stethoscope to my chest and immediately recoiled, exclaiming to no-one in particular, 'Oh dear.' He looked scared and didn't listen any more. The junior doctor called ITU. The nurse called the EAU consultant. The consultant said to call ITU again, get an urgent chest x-ray, and give me IV hydrocortisone. The nurse came and gave me half of the hydrocortisone injection then left, went to the nurses station where she promptly fell to the floor and had a fit! Another nurse gave me the rest of the injection and the ITU registrar came to assess me, immediately saying that I needed to go upstairs. My transfer to ITU was a little delayed by the nurse's fit, but not by too long, however it caused quite a stir as you may be able to imagine. As I was arriving on ITU the patient in the room next to mine was so disoriented through illness that they were getting aggressive, punched a nurse in the face and apparently broke her nose! The staff did well not to be too distracted, and I have to say that despite my previous negative experiences of RVI, this time ITU staff were very good and I had a very lovely nurse - Bonny - and a great student nurse - Kate - looking after me. I very narrowly missed being ventilated, but stayed in ITU for four days nonetheless before being shipped across the city again to Ward 29 at Freeman Hospital, where I am now. I was still pretty ill when I came here, the cold having turned into moraxella pneumonia, and then they also grew pseudomonas in my sputum. I've been and felt very ill and it's taken a heck of a long time to settle, needing to be on the aminophylline infusion for twelve days this time and only just feeling like I've really turned the corner yesterday. To be perfectly honest I wasn't convinced I was going to survive. in fact there was a point when I was in EAU when I suddenly became certain that I was going to get a little bit better before getting much worse and then die. It was an odd certainty, that clearly turned out to be wrong, but I think perhaps that certainty spurred me on to draw on every ounce of strength I could get from anything and everything. I texted friends and asked them to pray. They did. I survived. I feel lucky to be alive, very lucky. And I remember thinking, 'I'm damned if I'm going to die this close to getting my degree. I don't want the only letters after my name when I die to be R.I.P.'

And now I'm recovering. Still in hospital, but mending. However, it's been an awful time, and fast on the heels of my previous admission with a stressful, ill week between them, and I've felt very much like what is emblazoned on the hospital gowns I'm put in when I'm admitted and wear for several days until I can be bothered with my own pyjamas - 'Hospital Use Only.'

By the way, my sodium levels came back down to normal - high normal at 143, but normal - on their own. That's all a bit of a mystery, but it certainly caused some anxiety.

Saturday, 9 October 2010


Very briefly dropping by to say that I'm home :oD I was discharged on Thursday late afternoon, despite feeling as though I may have been starting with a chest infection. The CT1 (SHO as was) said that I could stay if I wanted to, but I was determined to come home if at all possible, so I have been allowed to escape providing I got in touch with either them or my GP if the chest infection warning signs got at all worse. I promised I would. And first thing on Friday morning I was phoning my GP surgery for an appointment as I was producing pondlife :o( I'm okay, but I'm lurgified, and that seems grossly unfair. However, I now have PLECs - Pond Life Extermination Capsules - aka antibiotics, so I'm hoping they'll do the trick. While I was seeing the GP I asked about a short course of furosemide to help the water retention, and she was okay with that. I have to have my bloods done anyway (to check thyroid function and a diabetes screen, because of the possible carpal tunnel syndrome), so she's going to add on a renal function screening, although she could see from tests I had done in hospital that they appear to be okay. She was lovely. I hate my body, and I hate having it examined, but I knew she had to assess the oedema for herself so I let her and she put me at ease, and I was able to show her that although I'm far too big anyway, the *huge* pockets of fluid are not normal. She agreed. She was gentle while she examined me, but she could also see how tender I am, so she has given me a week's course of furosemide to help alleviate things. I have to go back to see her next week, partly to see how things are regarding the fluid retention, and partly regarding the chest infection. I hate that I seem to spend most of my life in hospital and doctor waiting rooms, but it really helps when the medics I encouter are so lovely.

By the way, I have a story to tell about a spider, but I'll get back to you with that next time.

Thursday, 7 October 2010

Water balloon

I have swollen up with water retention again, pretty much as I did last time I was in, and like last time it's sore and uncomfortable and miserable. Unlike last time, the doc has been very reluctant to prescribe any meds to help relieve the water retention, so while I've been telling them for at least a week that I was starting to swell up, nothing has been done. I asked them for some furosemide, but I was told that nature would take its course. Nature refused to take its course. I asked again, but I was told to try to move around more and that would help. I moved around more, and walked on the spot in my room on my own for as long as I could comfortably go and for longer. Moving around more didn't help. I have continued to swell, and the fluid has gathered once again mostly around my hips and waist, and I feel like a balloon that's about to burst, and my skin is sore and stretched and nothing is comfortable. I asked again for some furosemide to help, but I was told that they were reluctant because I'm on so many meds already. I can understand that to a degree, but not when I'm so uncomfortable that I want to cry. And the stress built up, and the whole damn lot just got too much to contain, and the water burst out of my eyes in a torrent of tears and pleading, and desperation for something to help get rid of the swelling. I was told that in their opinion my feet looked a little better today. That's because it's all around my middle and my hips and my waist...except that actually it's all still there in my feet too, and I hurt and I'm bursting, and my body is going to pop and my skin is going to snap, and I'm sore, and I'm crying, and I don't understand why they won't give me something to help. I was given furosemide last time and it did me no harm; in fact it helped, as it ought. Why so different this time? What is the reluctance? What is the problem? Why don't they give me a reason? Apparently I have to understand that there's a hierarchy of doctors and that if the more senior doctor doesn't want to prescribe the meds I'm after (for whatever secret reason) then the junior doctor will not take any initiative in doing what is actually necessary for the patient's welfare. Okay, so I understand there's a hierarchy. I understand that junior medics have to play by the rules of their seniors. I don't have to accept the lack of reasoning for the 'action' being/not being taken. I don't have to agree with the decision. They don't seem to have to see it from the patient's point of view; and God forbid that they should see real patient distress in discomfort as reasonable. And no, this is not my usual experience, and no this is not my all-encompassing opinion of these people and their attitudes - it is my experience of them in this instance, in this situation, when I'm sore and stretched, and I'm tired and fed up, and I'm drained by the cycle of illness. It may 'only' be fluid retention, but it's just all a bit too much, and sometimes it's the seemingly small things that tip the balance from coping to emotional melt-down. Today I reached melt-down, and I cried, and I cried, and I lay in the darkened room, and I cried, and I hid under the sheets and I threw my dressing gown over my head, and I cried. Then I cried some more, and I felt wretched and I wanted the world to disappear, or me to disappear, and I wanted to stop hurting, and I still want to stop hurting. And I want illness not to be a part of my life, the major part of my life, the pivot of my life. I want to be normal, not NFB - Normal For Becky. And I'm fed up and miserable and wallowing in self-pity. And I cry and I weep and I feel lonely and miserable and as though nobody in the whole world possibly understands what any of it is like, particularly not these doctors who's knowledge of all these things is most likely through the pages of their text books rather than personal experience. And today I feel like an experiment that's gone wrong, but is still rather interesting to watch in some odd way. I don't want to be an experiment. And I have cried, and I have exhausted myself, and I have cried some more, and I have wept through cyberspace to some friends, and they've let it be okay to be miserable. And I've covered my face in snot because I haven't got any tissues, and my friends haven't been disgusted by the snot. No, they've found a use for it - use it as glue and throw glitter on it. Make the mess a pretty mess. And I'm still enormously full of water and feeling like I'm going to burst, and I'm hurting and I'm sore, but I'm loved by my friends, and I'm calmed by my friends, and I'm held by their cyber hugs in a real warmth and the glow of cyber glitter and cyber snot, and the mess is still as messy as ever, but it doesn't matter because I'm held by their love when everything has just got too much.

The nurse weighed me and it was found that I had eleven pounds of water retention, so now the doctor believes that I might actually be feeling as sore and uncomfortable as I was telling her I am. I was given one tablet of furosemide, but I don't know if this is just for today or if I will get it again tomorrow and some to take home. What I do know is that there's no way that I've got rid of 11lbs of oedema this afternoon, and I still hurt, and I'm still stretched, and I'm still a water balloon. But I hope that tomorrow I will get another pill to help wring the water from my over-stretched body ... and if I don't I will have to hope that the water in my body can somehow all be released through my tear ducts as that seems to be the only other way that any fluid is leaving my body.

And maybe this doesn't make any sense to anyone but me. And yes, it's a ramble and a mess, but today I am a ramble and a mess. And sometimes life is messy and it can't be written about in a neat and tidy way with pretty language and sentences that flow easily. Sometimes it's all too much. Sometimes bubbles burst.

And then my vicar came and he brought me communion, and it's so long since I had communion because it's so long since I've been to church, because so much of the time I feel too ill to get there or be there once I've got there. But each day I've been here I've curled up with God, snuggled under his blanket and poured out all my prayers of thanks and confession and supplication. So communion feels good. No, communion feels wonderful. Communion brings me a little peace and a message to 'be still and know that I am God,' so I am still and I know that He is God, and I rest with him a while. Then I do some cross-stitch to distract from the discomfort of my water-filled body and the discomfort of my crying mind, and it turns out that a combination of communion and cross-stitching Mr Tickle (and have one of your friends tell you that he's going to call you Polly from now on) can actually help emotional melt-down.

Monday, 4 October 2010

Toilet humour

I pressed the bell to call the nurse to bring me the commode. Commode brought. Marvellous. I sat down and did a wee (I'm sure you wanted to know that ;oP ). Marvellous relief. I realised then that the toilet roll was on the other side of the room. Bugger. I had to negotiate my way around the table, the chair, the bed, the oxygen tubing, the drip stand, the computer wire, the bin, my shoes, and the wheelchair, all with my pyjama trousers around my ankles, in order to get to the damned toilet roll. And then, of course, I had to do the whole thing again in reverse whilst keeping hold of the toilet roll. And of course this was the time that my blood pressure decided to drop again and I very nearly ended up head-first in the commode pan with wires and leads and trousers wrapped around my ankles. Luckily I managed to avoid giving myself a wee facial, but this wasn't my finest hour, it has to be said.

Saturday, 2 October 2010

Plumbed in and switched on

It's a wee while since I last posted, when I was only a few days away from getting my new permanent plumbing in the form of a portacath. I was a tad nervous about the op, but Dr G gave me a small amount of medication to relax me so that I wasn't really bothered about what was going on, and that worked a treat. Before the whole thing started I had to have a single (but rather large) injection of a powerful antibiotic to ensure that the MRSA I carry doesn't infect the surgery wound, and this of course meant getting an IV line in, but seeing as I was getting the portacath put in because getting IV access in me is very difficult these days, it was not the easiest thing to do and the ward sister who was doing it said she could see why I was having the port fitted. Anyway, she eventually got access, and tentatively gave me the meds - teicoplanin - just in case I were to have an allergic reaction to it. Dr G was fairly confident that I wouldn't, but they can't be 100% sure until it's proved either way. Thankfully all went well and an hour or so later I was in theatre. I was given some local anaesthetic and then Dr G started the procedure, which at first I couldn't feel anything of, but then suddenly could as he pushed his finger through my chest muscles to make a hole for the portacath to sit in. It hurt. A lot. I managed not to say anything, but the pained expression clearly showed on my face and I was quickly given some more local anaesthetic. After that there was just a bit of pushing and prodding, and slightly weird feelings on the inside as the catheter bit of the portacath was pushed inside and assessed for length. At first it was all a bit odd and I wondered if I'd just get used to the feeling of the catheter inside my vein, but shortly after Dr G attached the port bit to the catheter bit he decided that the catheter bit was too long, so he pulled it a little way out, cut a smidgen off, and all of a sudden all weird sensation disappeared. The portacath was sewn into place, my skin was pulled together and stuck together with industrial-strength steristrips, a dressing was put over the whole lot and I was taken back to the ward. I was in theatre for perhaps an hour and a half - a little longer than they'd originally thought it'd be - and then I had an x-ray to check that all was okay and there hadn't been any complicating lung collapse or the likes. All clear, a little rest on the ward, and then I was free for my mum and step-dad to take me home. Marvellous! It was a little sore for a few days, but you don't expect to be pain free when you've had a man come at your chest with a knife, push his finger through your chest muscles, and then insert a piece of metal with a plastic tail into you, do you? It wasn't awful though and a regular combination of codeine and paracetamol settled it fairly well.

A little over a week later and I was at the GP surgery because I've been getting neuropathy in my hands. The doc examined me and has decided that I most likely have carpal tunnel syndrome :o( and she's referring me to plastics, which seems a bit odd as you'd expect neurology to deal with nerves etc, but apparently it's plastics who 'do' carpal tunnel syndrome. I'm told they'll do a nerve conduction test (whatever that might be), and if it tests positive then the likely outcome is a small operation to reduce the pressure on the offending nerve - the medial nerve, I think. So yes, that's why I went to the GP, but after we'd covered that she asked, 'So, can I ask? How's you're breathing?' Seeing as I couldn't speak in full sentences it would've been foolish to try to persuade her that I was okay, so I came clean and said that it wasn't great, and that yes, I was had deteriorated a little since I saw one of the other GPs two weeks previously. She had a listen to my lungs. She wasn't very impressed. Actually she looked a little scared, but she was an F2 trainee GP so perhaps hasn't come across an awful lot of awful asthmatics. She left the room and got her supervising GP - Dr Cn - who knows me very well. Now he's seen me a lot worse, but he wasn't happy with me either and both 'strongly recommended' that I go to hospital. I conceded. To be honest I was tired of the struggle that had been getting worse over recent times, and while I was at the surgery they got through to the ward and arranged a bed for me. Now, as is my wont, I almost always have something much more pressing to do than immediately go to hospital, and this time it was that I needed to get home to let the man from the council come in to check the electrics of the new ventilation system. It was supposed to have been done the previous week, but I'd had to cancel it as the appointment clashed with my portacath operation, and suddenly it seemed the worst thing in the world to let him down and not be in at the re-arranged time. The docs were a little confused as to my insistence that this was more important than getting to hospital, but Dr Cn does at least know my strange ways when I'm ill, and decided that I was safe enough to do this. As it turned out, the ward didn't have a bed until 1pm anyway (and it was currently around 10.50am) so I'd have been hanging around the surgery for ages. I was better off at home where I could gather my hospital bag, my meds, sort out the cat, and, of course, let the man from the council do the checking he needed to do.

I went home. I was okay. Well, I was sort of okay, in a kind of Becky-ish way. I texted W to let her know what was happening, and she wasn't surprised to hear that I was being admitted as she'd seen me just 36 hours previously and was concerned. She came right over and waited with me until it was time to come up to the hospital ... although actually we had to wait a little while as W's lungs were naff too and she needed to nebulise before she could drive me up to the hospital.

When I got to the ward I was still in that 'not too bad for Becky' kind of state, but as seems to happen sometimes when I've been deteriorating over a while and then get to somewhere 'safe' to splat, I did then splat and ended up quite poorly :o( We'd been hoping not to have to use my new plumbing quite so soon, but it wasn't long before it became evident that it was going to be put to use. But oh my word, how amazing! It's fantastic! No pain. No farting around with endless cannulae. No panic while trying to get a needle into a vein that doesn't want to be stabbed or have a needle put into it. No hassle. Just get the technique right, plug me in and set me going! Amazing! Wonderful! Awesome! And no hassle since, either. No problems with the lines stopping working, or leaking, or giving up, or getting caught and being pulled out. Nothing. Just straightforward, continual clear running. Huge relief. It's the best thing ever! Can you tell that I quite like it? ;oP So yes, while it was unfortunate that it was needed so soon after being implanted it has made that little bit of hospital life so much easier. However, the night wasn't easy and I was really quite ill. My blood gases were a bit of a mixed bag, with my pO2 being okay, but my pCO2 being a little too high for comfort, and that's a concern. That's the one that indicates how tired you're getting, and rather than coming down it was getting higher. Thankfully I managed to avoid ITU, although the outreach team did come to see me several times over the next several days to keep an eye on me and to keep reassessing whether or not I needed to be transferred to ITU. I don't like it there though and will do all I can to stay up on the ward. Anyway, I avoided it :o)

The night was a long night; a breathless and scary night. The registrar who was on call was worried, and although she'd gone home at about 1am she kept phoning the ward to see how I was, and at about 5am she said she was too worried, was giving up on sleep and coming in to be with me. Bless her. I was utterly exhausted, but still just about holding my own, and then things gradually started to ease, and eventually I fell asleep for a short time, although breathing remained hard work for the rest of the day, the following night and into the next morning. And then I slept. And I slept. And I slept. And then I slept some more. And then I started to feel a little bit more human although still very tired.

We started to tentatively reduce the aminophylline infusion from 50ml/hr to 40ml/hr, and that seemed to go okay, so 24 hours later we reduced it again to 20ml/hr. That started off okay, but then I woke up in the middle of the night unable to breathe and back at square one, with rising pCO2 again, ineffective nebulisers, ITU back up here for 3 hours and outreach keeping returning to check on me. I felt awful. I was scared. I was exhausted. I would've cried if I'd had the energy or the breath, but I had neither. I prayed and I prayed, and I texted my friends asking them for prayer too, and my friends texted back with both prayer and other support, keeping me sane in the scariness of it all. I think the medical staff probably find it odd that I often text when I'm really ill, but it's such a lonely, isolated time, and there's so much going round in my head that I'm not able to speak as I don't have the breath, but which I can say in text with ease. And wherever they are in the country, my friends have been there for me and sat with me in the dark at the end of the text line and seen me through the fearful events, and the painful tests, and the desperate fight for breath, and the complete exhaustion. And I know that they are worried and scared too, but they stay there with me all the same. They are amazing. They give me strength and fight, and they let me know that I'm not alone.

Eventually I made it through the relapse and I slept for another 36 hours with my head full of violent dreams about death, attack, beatings, fear. Little of it was truly restful and I kept waking for brief times full of fear, but too exhausted to stay awake, so I fell back into another, different violent dream. I'm still finding my dreams are violent and vicious and frightening - this phase persisting longer than usual - but perhaps that's because there was such a bad set-back that my body and mind weren't prepared for another assault so quickly on the heels of the first.

At last I am eventually feeling more human - human enough to have the computer out this evening and be updating you on recent times. I am still tired. I'm still on the oxygen and the aminophylline infusion, but the dose has been reduced again this afternoon back to 20ml/hr (it had been put back up to 50ml/hr when I relapsed) ... so now I'm back to where I was the night before I had the set-back. I've no reason to believe that the same thing will happen again, and I actually feel a little more stable this time round than I did last time, but it's always a little anxiety provoking and I won't be counting any chickens of any kind until the drip is down successfully.

Saturday, 11 September 2010

Plumbing and ventilation

So sorry that I haven't posted for a couple of weeks. This is partly because I had some time away in Edinburgh visiting my mum and step-dad, and although I took my computer with me, I spent more time reading and doing cross-stitch than online. Since coming back I've been a little distracted by still not feeling too well and very much trying to stay out of hospital.

I had to postpone my trip up north by a day and a half because I had a call from Dr G's secretary offering me an appointment to discuss the portacath situation. Having waited for this for so long (or at least it seems that way) I wasn't going to turn this appointment down, so on the Thursday afternoon I made my way to the RVI to see Dr G. He went through the possible risks of the operation - mostly that of a collapsed lung - and those of post-op - mainly infection - and he showed me a portacath and explained how it was implanted. I'm having the op on Tuesday, this coming Tuesday! It's another of these ops that's done under local anaesthetic, although Dr G did say that he'd give me a little sedation. He also said that if anything did happen to go wrong (only occurs in about 1% of cases apparently) then he'd be there and he'd deal with it. I have confidence in Dr G. I've met him on several occasions and know that he's highly competent. He can sometimes come across as a big bear of a man, although he does seem to have shrunk in size a little in recent times, but his personality is as big as ever.

When Dr H agreed to the possibility of a portacath he said that there was one proviso: that the portacath not be used in A&E, but when I was in A&E a couple of months ago and they asked me if I had the port yet I told them no and that I'd been told A&E wouldn't be able to use it. They'd said they would in a life-threatening situation. Hmmm. I said all this to Dr G and he responded by saying that yes, in a life-threatening situation then A&E could use it and (aside from the risk of infection) one of the main reasons they wouldn't be able to was because they wouldn't have the right needle, but he'd give me some of these just for a life-threatening attack in A&E. Okay, thanks, but what about those attacks where I'm in A&E but it's not quite life-threatening? 'Well,' he said, 'What you do in that situation is you say, "GET THE F*** OFF!" and then they can't touch it.' Errr, right. I can't quite see myself either using quite that language in A&E, nor having the breath to scream obscenities at them, but I'll do my best to come up with something as effective. Then it struck me. Here I was sitting in this little room with a doc who'd just screamed 'GET THE F*** OFF!' and soon I was going to have to walk out of there, into the waiting room with quite a number of people in it who will likely have heard the exclamation! So a short while later, when the consult was over, I decided there was nothing for it - I was just going to have to walk tall, look confident, and smile. I did. I got several wary looks that followed me to the reception desk and then up the corridor as I left.

So here I am now, three days away from becoming a little bit more bionic. At the moment I'm not that nervous, although I'm sure I will be at least a little nervous come Tuesday. I'm just really, really hoping that my lungs are up to it. Dr G is both a respiratory consultant and an ITU doc so I'm in very safe hands, but there'll also be no hiding lung naffness from him.

Whilst my personal ventilation isn't going too well, my flat's ventilation is doing marvellously, thanks to the folk at EnviroVent. You will no doubt remember that after my appearance on the local news supporting Asthma UK's Fighting For Breath Report, EnviroVent contacted me via BBC to offer me free installation of some of their equipment as they thought it might help me. This resulted in a second TV appearance, but more importantly it's resulted in much purer air in my home. It'll take a while, I should think, to get the full benefit as dust mites and any mould spores don't disappear overnight, but the air is certainly much improved. The time that I first noticed a real difference was a few days before I went up to Edinburgh. It was extremely muggy and humid outside and when I went out to the shops I could barely breathe. Back at home there was none of that humidity and suddenly breathing was so much easier again. I spent the rest of the day inside, and have done so on several other similarly humid days since. I know it's not a magic cure, but it's already helped in at least one situation and that is so unexpectedly fantastic. Unexpected because I didn't expect anything ever again to be offered to me that might, just might help my asthma in any way. Here's to EnivroVent!

Tuesday, 24 August 2010

Pausing for breath

Last week was a bit manic and mainly with health related appointments. Monday's was with the disabilities advisor at Newcastle University's Student Welfare, during which we went through what needs I may have while I'm studying with them. It was very useful, but obviously concentrated on how decrepit I am so I came out feeling a bit pleugh, although I did also feel positive about how they're going to manage things. One of the most ridiculous things the DA is having to sort out is for staff to get permission to use my Epi-Pen on me if the need should arise. At the moment they're not allowed to in case I sue them for assault! Crackers! The DA is going to speak to Occupational Health and also the Health and Safety Officer, who apparently is the only person currently allowed to use my Epi-Pen on me, but that's no good if he's not immediately around because if I need someone else to administer the adrenaline then I need it there and then. Various other things are going to be put in place too, including a note-taker to attend my lectures when I'm in hospital. Brill. There'll likely be bits of equipment I'll be getting too, either through the university or through the Disabled Students Allowance, which I've eventually got around to applying for after all these years of study.

Tuesday's appointment was relatively brief and was with the optician. I'd been told after my cataract operation that I had to go to my regular optician for a sight test and check-up two days before my check-up with the ophthalmologist. It seems a bit daft to me seeing as they do a basic sight test at the ophthalmology department when you go for your appointment, but I was good and went to the optician. The verdict is that my general sight in my right eye has improved a little since the cataract was removed, but my reading sight is a little worse. I could've told them that myself ;o) I have to go back for another sight test and new glasses after my second op.

My psychiatrist was supposed to come on Wednesday morning - 8.30. Ug - but twenty minutes after she was due here she rang me to say that the centre had been crazy all week so she'd had to go straight there. Somewhat ironic that she should describe a mental health centre as 'crazy' ;oP It made me smile anyway. After apologising for not being able to make it she said, 'I have a confession to make,' which made me a little nervous until she continued, 'I was watching telly the other day and I saw you. I shouted, "That's Becky! That's Becky!"' Tee hee :o) After that we had a relatively short telephone consultation, which went okay and was really just a quick monitoring and my conveyance of a self-assessment of how I am. I'm doing okay emotionally - certainly better than the last time I saw her :o)

On Wednesday afternoon I had an appointment with the physio at Freeman Hospital - a pre-pulmonary rehab assessment. This mainly consisted of going through a questionnaire I'd had to fill in before the appointment and going through another questionnaire the physio had there that concentrated on exercise tolerance, perception of health, and my goals for the pulmonary rehab. We obviously also discussed their concerns about my passing out and how they/I will manage them during rehab. Then I had to do a 6 minute walk test to see what happened to my oxygen saturations and my pulse rate. Predictably, my O2 dropped (but only a little) and my pulse rate went up, and of course I staggered around a fair bit, frequently using the wall for support, as walking in a straight line for anything more than a few steps (and sometimes not even that much) doesn't happen with me these days. The verdict is that I'm decrepit enough to warrant being on pulmonary rehab and not so awfully decrepit (at this moment in time) that I'm excluded from taking part :oD I start on Thursday next week.

Most of Thursday afternoon was taken up with the ophthalmology appointment I mentioned before. I was running a little late through the day after a bit of a rubbish night and I was worried that I might be late for my appointment, but honestly it's their time-keeping that needs putting in check, not mine. Like last time, I was there for three hours! Three hours! Three hours for a five minute sight set and a five minute consult with the doctor. At least I got a date for my second cataract removal op - 13th October. I was hoping that I'd get something before that, but as it's the consultant doing the op that's the earliest they had, but said they'd give me a call if they got a cancellation.

Friday morning was taken up with a 'Continuing Care' assessment by Social Services, which took about an hour and a half and again meant concentrating on how utterly rubbish my health is. The point of it is to assess my level of care needs that are medical based, rather than socially based, and therefore how much, if any, the Primary Care Trust (PCT) will pay towards it. To be honest I'm not completely sure how this may effect me. I mean, I don't know if it effects how much I have to pay towards my care or if it's purely to see if I pay the PCT or Social Services ... or some other variation of this. All I really know is that it's something to do with payment, and that going through the assessment made me feel pretty lousy about my health and general state of well-being :o( And to top off the day (and the week) I had a dentist appointment. It was just a check-up, but going to the dentist is never fun. I haven't actually been to the dentist since June last year when he accidentally instigated anaphylaxis by smearing something with a tiny amount of banana derivative in it on my teeth. As soon as the dentist saw me in the waiting room he came and sat beside me and said he was about to go into the room and clean everything thoroughly before I went in and he wasn't going to wear latex gloves, even though I'm not (yet) allergic to latex. When I went in he said, 'I'll have a look, but I'll probably just need to do a scale and polish and I'll get the hygienist to do that.' I got the impression he was slightly nervous ;oP He must have spent all of about a minute looking at my teeth before saying that he was right - a scale and polish with the hygienist is all that's needed. I wonder if the dentist will warn the hygienist that I'm a terrifying patient to have in the practice ;oP He certainly couldn't get me out of there fast enough.

So that was last week, during which time my lungs have been slipping and I'm not sure how long I'm going to last. I've been taking things easy the past few days, trying to beat the old breathing bags into submission with rather a lot of salbutamol and prednisolone. I think I'm much the same today as I was yesterday, and I need to keep on a level as I'm going up to Edinburgh later in the week. I was supposed to be going up there tomorrow, but yesterday I had a phone call from Dr G's secretary giving me an appointment for a pre-portacath consultation on Thursday afternoon. This is good news. I've been waiting for this for what feels like ages. Dr G is going on holiday for two weeks after this, but his secretary said that he's trying to organise a date for theatre for when he gets back. Maybe I'll get a date for the operation when I see him on Thursday. I'm sure it'll give me a lot to think about on the drive north immediately after the appointment.

I'm sincerely hoping that I'm going to be okay while I'm in Edinburgh - breathing wise, I mean - but things are really quite iffy at the moment. I can manage if I stay still, but breathing and walking is something of a challenge. I've got an appointment with Dr H (asthma consultant) on Thursday next week so we'll see what he has to say, and how I am, but at the moment I'm very unimpressed with the state of things ... and I'm not excluding the possibility that I'll end up in hospital while I'm in Edinburgh :o( I hope not. I really do. I'll keep you informed.

Friday, 13 August 2010

Question 1

Sometimes things puzzle me. Here's one of those things:

Why did God make moths nocturnal when they're attracted to light?

Wednesday, 11 August 2010


Hurrah! I have good things to report! First off, I got the results for my latest OU course - children's literature - and I got a Distinction (a First) with 90% for the End of Course Assessment (the one I wrote when I was so desperately ill because I was refused an extension) and 86.5% for the continuous assessment. All but one of my continuous assessment essays were over 85%, but my OCA mark was brought down a little by the 78% I got for the second assignment Sooo, the Distinction I've got for this course adds to the other three I've got, and although I have one more course to do before I graduate I know now that I will come out with a First Class Honours degree, providing I pass the last course. As I'm doing things in my typical backwards way, this last course I have to do is only a foundation course so it's just pass or fail - no variation in pass levels - and as a foundation course it doesn't count towards my final class of degree, which is how come I know what degree classification I'll graduate with :oD It certainly takes the pressure off, and I can be extremely proud of myself achieving what I have, and against the odds with my health.

Continuing with the education theme, I've had my official acceptance from Newcastle University onto the Post Graduate Certificate in creative writing - an unconditional offer after a glowing reference from my latest OU tutor :oD I'm a very happy bunny and looking forward to starting my post grad studies ... even though I'll simultaneously be finishing my undergraduate degree...

Now you may remember that some time ago I asked if it'd be possible for me to have pulmonary rehab at the Freeman. Initially the physio had agreed, but then they got scared off by my regular passing out, which is understandable I suppose. So then, feeling rather despondent, I asked my GP if he could help, but he was then pushed from pillar to post and apparently ended up writing to Dr H (asthma consultant) to see what he could do. Then at the beginning of last week I had an appointment with the physio at the Falls and Syncope Service at RVI to see if they could help with the imbalance I have due to the POTS. The physio here, L, was great (as all the staff at the F&S clinic have been in all of my contact with them) and she's given me some balance exercises to do. Anyway, while I was there I spoke to L about the pulmonary rehab and the reticence of physios not used to POTS (fair enough considering the rarity of it) to take me on, and also whether she thought it'd be reasonable for me to take part in pulmonary rehab. After my assessment with her L thought pulmonary rehab would be great for me, and said that she'd discuss it with Prof N (one of my POTS consultants - for some reason I have 2 in the same department!). The next day I had a call from L saying that she'd discussed the pulmonary rehab option with Prof N and she also thought it would be of great benefit to me. Prof N had written a letter to the physios at Freeman to put forward my case, whilst acknowledging the justification for their anxieties, and L said that I should hear from the Freeman shortly, but to get back in touch with her if I hadn't heard anything in three weeks time. Well, that afternoon I received a phone call from the physio at the Freeman offering me an appointment for my pre-pulmonary rehab assessment! L must have faxed the letter through to Freeman. I'm so pleased. I can't wait to start getting some level of fitness back, and to get my confidence with it back too. I'll keep you posted with how the assessment goes and what happens in pulmonary rehab.

It's three weeks today since I had my first cataract op, and things are now much more settled with it. I'm still surprised by the brightness of colours and the fact that things have actual edges! My sight is still lopsided as I've yet to have the second eye done, and also get new glasses, but already things are so much better than before the op and it's all very exciting :oD I have one more lot of eye drops to do at midnight tonight before I can stop being ruled by the clock and having to remember to take the drops with me if I go out (ensuring too that they're kept cold as they're supposed to be refrigerated), and then I have my follow-up appointment at the hospital on Thursday next week. Two days before this I have to go to the optician to have a post-op eye test so that the surgeon has something to work on at my clinic appointment, so that's all booked in for Tuesday. I'm still having problems reading and doing any kind of close work, which is very frustrating, but I know that'll be sorted when I get new glasses after my second op. In the meantime I'm enjoying already improved sight.

Oh, the other thing is that I've had the super duper ventilation system from EnviroVent installed. The bulk of the work was done on Monday with the BBC news reporter here too doing lots of filming and interviewing in the morning - he was here for almost three hours! He came back a couple of hours later to do a bit more filming and to interview one of the directors from EnviroVent who had come up from their head office in Harrogate. He was lovely, and actually the person who had seen me on the initial news item a few weeks ago, and thus instigated the whole thing with EnviroVent. It's so very generous of them, and while only time will tell if it helps my asthma, I can already feel an improvement in the level of humidity in my flat. The installation was finished off this afternoon, with the last of the boxing-in of the piping being done and the new fan in the kitchen. The engineer was brilliant, friendly, efficient, hard working, and an all round good guy :o) Both of us were on the telly on Monday evening on both the 6.30pm programme and the 10.30pm programme, and I learnt from a friend today who had a visit from her social worker yesterday that, as a result of my appearance on the telly, the local social services are going to review their provision of services for severe asthmatics. Apparently they weren't really aware of the impact that severe asthma can have on an individual, learnt a lot from the news report I was in, and consequently think that they're not doing enough for people with asthma. I think this is an amazing result and more than I could have hoped for from the report, so I'm now more than ecstatic that I agreed to put my insecurities aside and take part in the TV publicity.

Results all round!

Wednesday, 28 July 2010

I spy with my little eye

It's a week since I had my first cataract op and I'm doing okay :o) I had to be at the hospital for 8.30am and was told that I was near the beginning of the list, and then they suddenly realised that I'm MRSA positive (it's been in my notes all along so I don't know why they only just realised) so they moved me to the next door ward, put me in a cubicle, and moved me to the end of the surgery list :o( Consequently I didn't go into theatre until 11.50am. I was in for about half an hour, was taken back down to the ward, told I'd be able to go after 1 to 2 hours so long as my prescription was up. My prescription got lost and I didn't leave the hospital until gone 4.30pm. It was a loooooong day.

So how was it? Um ... okay I guess. It started with some kind of test done on the ward where the nurse numbed my eyes and then put a sensor wotnotthingumyjig (that's technical terminology) onto my eye ball that supposedly detects the strength of implant lens that the surgeon should put in once he's removed the lens with the cataract. It was odd being poked in the eye and not feeling anything, though I have no complaints that I couldn't feel anything! Then the nurse took my glasses away for another check on the implant lens that would be needed (I don't know why they needed to this and the 'poking me in the eye with a sensor wotnotthingumyjig' test), and while they were having whatever check was being done she brought a sample implant lens for me to see. The slight problem was that without my glasses, and with my pupil dilated, I couldn't see a sodding thing. Add to this the fact that the lens was supposedly tiny, transparent and floating somewhere in some clear liquid, the chances of me seeing it were slim to start with. After several times of the nurse trying to point it out to me, and my explaining that I couldn't see it without my glasses, I gave up, lied, and said, 'Oh yes, there it is. It is tiny, isn't it? Amazing.' The nurse seemed satisfied, and she went and got my glasses.

The op itself was weird. By the time I'd done all the waiting around to go up to theatre I thought I was more bored than nervous, but the surgeon had to remind me to breathe at one point. LOL I guess I'm so used to not breathing so well that when I get nervous and hold my breath I don't notice, but once the surgeon asked me to 'take some deep breaths and then just breathe normally,' I heard the beep of the oxygen saturation sensor was down in the lower range of things, but gradually rising as I took some breaths. I don't know what my sats went down to, but they had a little way to come up. I was fine though, and it wasn't anything to do with my asthma; just nerves.

So anyway, the op. It started with a sticky thing being put on my eye to keep my lashes out of the way and a brace being put in it to keep it open. Then a variety of drops were put into my eye, which made me jump every time they went in, although aside from a slight sting from one of them they didn't hurt. At first I could see all the things coming at me, despite the almost blinding theatre lights, but as more of the drops and then I think an injection were put in everything went misty, and then completely white. I thought about what my dad would say and knew he'd say it was interesting, so I concentrated on that thought, took it as my mantra for the whole op, and was thankful that my total blindness was only temporary. Apart from the white I could see the odd shapes that the theatre lights were now making - something akin to butterfly shapes, but with kind of holes in them - and vague, shadowy shapes of things near/in my eye. I could feel pressure at times, but there wasn't any pain, for which I am immensly thankful! And then the surgeon got the hoover out. That's not actually what it's called, but it's basically what it is. There was a lot of swirling in my eye, which I could see and that was very odd, and a weird 'sort of sensation' that I can't really describe, a lot of water dribbling down the side of my face, and a slightly disconcerting sucking sound. After the eye hoovering the synthetic lens was implanted, which I'm told is slipped in folded up and unfolded once it's inside the eye. How amazing is that?! It was another of those 'sort of sensation' moments, but fine. All done, patched up, and doing a fine impersonation of a pirate I was then ready to be taken back to the ward, where I had a lot of frustrated attempts at using my Nintendo DS, but without actually being able to see what I was doing. I had my glasses, but I couldn't get them on with the big patch and eye guard on my right eye bo) As the anaesthetic wore off my eye got very stingy, but I wasn't offered any pain killers so I waited until I got home. The patch had to stay on for the rest of the day and that night, but I could take it off the next day, and I now only have to wear the guard at night for the next week (having already worn it at night for a week), just to make sure that I don't rub it in the night. Mornings seem to be worse for swelling and bruising, but there hasn't been toooooo much of either. At first there was a lot of black and white flickering and it kind of looked like water was boiling in my eye, but that was just everything settling down. I'm still getting some flickering in the mornings, but mostly it's settling well bo)

I have to wait until I've had the left eye done before I can get a new prescription for my glasses - should be about 6 weeks till the second op, but no date yet - so it'll be a while till I get the full benefit of all this, but already I can tell a difference. For starters, I have the central vision back in my right eye! That's amazing! Everything's brighter. Colours are so vivid and vibrant! I hadn't notice how dulled colours had become, probably because the colour was leeched out of my world slowly as the cataracts developed, but now half the world is alive in a romp of colour again bo) And even though I'm yet to have my glasses prescription sorted, things already have more defined edges. The world is made of crystal, not frosted glass! Mind you, now that my right eye is done (the worst of the two) I see how bad the left eye is and I can hardly wait until both eyes are cataract-free and my glasses sorted. At the moment the world's a bit lopsided, but it's already a lot better than it was.

One of the temporary downsides is that I'm not allowed to drive for three weeks from the op - so I have another two weeks to go - and I'm feeling rather cooped up. Until both eyes are done then it seems that I won't be able to read or do any close work bo( I'm getting bored. I want to be doing cross-stitch and reading the novel I started shortly before the op, and I also have some reading to do in preparation for my next OU course. I've ordered some magnifying sheets from an online company but they haven't arrived yet. I'm okay using the computer as I can enlarge the text on the screen, but doing anything else much is proving very difficult and frustrating. The other thing is that I'm not allowed to get water in my eye for two weeks after the op, which isn't generally a problem except for when it comes to washing my hair. I don't have a shower, just a shower hose that attaches to the bath taps, but I can't easily use that backwards. My mum and step-dad stayed with me and looked after me from the day before the op until Sunday (and a marvellous job they did too!), so Mum helped me to wash my hair (leaning backwards over the side of the bath. That is, I was leaning backwards over the side of the bath, not Mum!) while she was here. Since Sunday though I've been to the hair dressers for a wash and blow dry, and have booked in for three more between now and next Wednesday, when I should be okay to do my hair myself again. I have to say that I was surprised at how expensive it is just to have a wash and blow dry (£13), so I'm just thinking of it as post-operative pampering ... or at least trying to.

All in all, it went okay. I was nervous, and it's not an experience I'd suggest putting on your 'Things To Do When Bored' list, but it's going to be fab when I've had both eyes done ... and when I don't have to put eye drops in four times a day ... or take other anitbiotics three times a day for the chest infection that I've managed to pick up along the way. Yes, another one! Still, on the bright side (that'll be the right side, now that the cataract from that eye is gone ;oP ), the driving restriction from the eye op is making me rest up, sofa surf and generally take things easy so my lungs might have more chance of clearing the infection.