Hogmanay

As you know, I came up to Edinburgh to spend Christmas with my mum and step-dad. We had a lovely Christmas day together with delicious food (thank you Mum), quiet times, lots of wonderful presents, jolliness, crackers, relaxation, Christmas tree lights, carols on the CD player and record player (yes, a record player!), and even a few on the piano from Mum. It was lovely. Very relaxed. Boxing day was equally gentle, with my friend O coming round for tea and cake in the afternoon, and it was all very lovely. And then I started to feel a bit itchy scratchy in the throat and had a little cough beginning, but it wasn't too bad so I got on with it and thought it'd sort itself out soon enough. Monday came and I was feeling a little off colour, but nothing very precise - coughing more, a little snuffly, sneezing a bit, a tad under the weather - and I thought I was probably okay for going to the theatre to see 'The Secret Garden'. I'm glad I did. It was fantastic, and the only sadness was that there weren't more in audience.

Monday night was a bad night. I coughed and I spluttered, and I wheezed, and several times I considered waking Mum and J to suggest that I maybe get checked out at A&E. I didn't though, and eventually I got a very small amount of sleep, but I felt rubbish when I got up and soon decided that I should probably call NHS24 for some advice as my breathing was getting worse and my parents' GP surgery was closed for the Christmas break. It took a while to get through, but I did eventually get to speak to someone who went through a whole list of questions about my symptoms, some of which were fairly obvious, like the wheeze and shortness of breath. Then he said that he'd ask me some other standard questions, and question one was, 'Are you conscious and breathing?' !!!! Um, yes, you've been talking to me for the past 5 minutes, and although I've been struggling somewhat, I have been talking back to you, which kind of suggests that I am both conscious and breathing in a fashion. Question two: 'Are you short of breath?' !!! Er yes, the give away to that ought to have been the fact that I couldn't speak in full sentences and was wheezing down the phone. He seemed alarmingly surprised when I said that I was indeed short of breath. He put me straight through to a nurse, who was much more sensible, immediately said that she could hear that I wasn't too well and organised an urgent appointment for me with the doctor at the out of hours service at the Royal Infirmary at Edinburgh (RIE) for 25 minutes time, although she kept saying that if things got any worse then we were to call an ambulance. We didn't call an ambulance, but we did make our way straight to the OOH appointment, where I was seen very quickly. I wasn't even in the room before I was being told that there was little they could do for me and they were going to scribble a quick letter before sending me up the corridor to A&E. Soon enough I was attached to high-flow oxygen, a porter was called and a nurse was escorting me in a wheelchair to A&E, whereupon I found myself being rushed into resus under the care of the A&E consultant. I was going downhill, and it seemed to be progressing relatively rapidly. The A&E consultant didn't leave my side, the respiratory team were called, the ITU team were called, I was swabbed for swine flu just in case, although nobody expected I'd have it as I was vaccinated back in October, but it was routine procedure now for all asthmatics presenting at A&E to be swabbed.

I was scooped up and whizzed along to HDU as I wasn't getting any better. In fact I was getting a little worse. And then I got much worse, and a couple of hours later my mum was being called back to the hospital as I was being moved into ITU where they were fully expecting to ventilate me. To be honest I'm not entirely sure why they didn't, and I was so exhausted that I would almost have been thankful for them to do so, even though I knew there'd be no guarantee that I'd get off the vent if I went on it. I fought on. I started to wretch terribly, although nothing came up as I'd hardly eaten for 48 hours, but still, uncontrolled wretching is not fun and it's even less fun when you can't breathe to start with. And then my temperature rocketed up to 40C and I still couldn't breathe, and the aminophylline was taking a heck of a long time to do anything. And then my swab results came back and it transpired that I did indeed have swine flu despite the vaccination, so I was whisked into isolation where anyone who entered the room had to cover themselves in an armour of apron, gloves and face-mask, and despite it being intensive care, they all had to leave the room when I was on a nebuliser because of the risk of aerosol particles of the virus being blasted through their armour. Instead they watched me through the window until the nebuliser was finished and then came back into the room to do all the intensive care bits that they do. And oh my god, then the pain. Not just aches, but fire. My muscles were on fire. I was in tears, which again didn't help the breathing, but I couldn't help myself, and through the fire was intense ache. My toes ached. My little fingers ached. My skull ached. The roof of my mouth ached. I was still wretching. My temp was still sky-high. My breathing was rubbish. I thought I was going to die. I didn't. Slowly, ever so slowly, my breathing eased just a little, and then a little bit more, and then they did an aminophylline level, which came back showing that I was at the very top end of the therapeutic range, beyond which it is toxic. They had to reduce the dose they were giving me. I appeared to be doing okay so after two nights in ITU I was moved up to the respiratory ward, whereupon I rapidly declined, and within a matter of hours my aminophylline levels had zipped right down to the very bottom of the therapeutic range, and the drug was basically doing nothing for me any more. The Registrar did an Arterial Blood Gas (ABG) and upped the aminophylline infusion again. The gas came back showing a pO2 of 9.7 so I was given more oxygen. Soon afterwards another ABG was done and my pO2 was at 9.2, with my pCO2 rising to 4.9 (still within normal limits, but not good in asthmatics with a falling pO2, and the fact that it was rising was concern enough). The doc was trying to give the aminophylline a chance to get back up to more therapeutic levels, but it was taking too long and the next ABG showed my pO2 had gone down to 8.7 and my pCO2 was 5.2. The Reg said I was in respiratory failure and that I would be going back down to HDU. I was scared. It was the middle of the night and I was on my own so I texted some friends and asked them to pray for me whenever they picked up my message. Several texted straight back saying they were praying for me right away, telling me they were with me in spirit and holding my hand even though they were over 100 miles away. I felt their love. I was sure I was going to die, and I practically resigned myself to it. I kept feeling the fight slip from me. I was exhausted. I hadn't slept in five nights and all that time I'd been desperate for breath. I was ready to give up. My family and my friends weren't ready for me to give up. I prayed for God to do whatever was in his plan for me, and there began an almost physical battle to keep the word 'fight' going round in my head. I wanted to fight, but I also didn't want to fight. I had to fight. I fought. Another two days and nights of no sleep; complete exhaustion; and a week in critical care. New Year's Eve spent gasping for breath and clinging to life by a whisper. A hug from a nurse. A taste of shloer. A tear.

In the end I was well enough to leave HDU again and come back to the respiratory ward. Still wheezing. Still short of breath. Utterly exhausted. Desperate for sleep, for critical care is one of the noisiest places in a hospital, and lack of breathing isn't condusive to rest. Put in a room with three other patients with swine flu. All of us behind a closed door through which only masked, gloved, and gowned staff enter, and visitors come at their own risk. Visitors do come though - my mum, my step-dad, some wonderful friends I've met through the Open University, along with a friend travelling back to Aberdeen from Newcastle.

I sleep. I feel overwhelmed by all that has happened. I feel so very loved by my family and friends - those who are here and those who hold my hand at a distance. I am impressed by the care I have received throughout my travels around the hospital, and I know that I am safe in their hands, which is so important as it means I can relax and get on with trying to get better rather than worry about what they may or may not do. The staff have all been wonderful. The medical care has been fantastic. They have, I'm told, been in touch with Dr H to let him know what's been happening and say they'll probably call him again on Monday to give a progress report. They've asked me all the way along the line what I need, what works for me. They tell me to tell them what I need as I know my disease better than they do.

The water retention is bad again, which was a problem when I was down in HDU and they started to dry me out while I was there because they were concerned that my lungs were beginning to sound wet and they worried about me developing full-blown ARDS or SARS. My lungs are still groaning, but the main water retention problem is in the rest of my body now, which is very uncomfortable and sore so they're giving me diuretics twice a day to try to help sort it out. I'm not getting very far with it as yet, but I'm still attached to the aminophylline infusion at full dose and I can't move far off the bed so my mobility is very limited and that's one of the natural things that's most likely to help. The plan is to start reducing the aminophylline on Monday (they're reluctant to do so over the weekend when staff numbers are down and they've seen how quickly I can collapse), so hopefully I'll be off the drip by the middle of next week and able to start getting some mobility back and that'll help shift the oedema.

They reswabbed me the other day for swine flu to see if the Tamiflu had worked. It hasn't. I'm still positive so although I had a seven-day course of it, and the usual is five days, I'm back on it for at least another five days. At least my muscles aren't on fire any more, even if they do still ache sometime and my body feels like it's been put through a grinder, and my lungs are still gurgly.

This has been a horrible time. I feel rather shell-shocked. I feel overwhelmed and yet simultaneously oddly underwhelmed. It's going to hit me full-force when I'm home, I think. At the moment I'm still in the 'getting on with it' mode that is necessary for recovery.

I'm supposed to be going on holiday for a week with my good friend O next Friday. We're going to Lancashire for a week of relaxation and writing. It seems unlikely that we'll manage to get there on the day we're supposed to be going, but I'm definitely going to need a break after this, and I've missed out on so much over the past year that I'm damned if I'm going to miss all of this holiday with O. We've both been looking forward to it for ages. We will get to some of it. We will. We will have fun and enjoy each other's company. We will write. We will not spend any time with flying pigs, or eat pork scratchings, and I will get rid of this curly tail and snuffly snout.

2011 can only get better.

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!

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.

Aragog

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!'
'What?'
'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.

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.

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.

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.