Gallery

I'm home. I've actually been home for a week, but I've been doing a certain amount of catching up on sleep, oh, and a little bit of study too, but rest and sleep have been my priorities. I've had a little more energy today than I have the rest of the week, so perhaps I'm picking up now.

Despite being tired, and having rather a lot to be tired from, I did enjoy (most) of my time away in Lancashire, and I thought I'd share some of my photos from it with you. The most random photo of the holiday has to be this first one:

Having looked this up online I see that it's probably a story about a controversial art exhibition at the Harris Museum, but still the mind boggles. O and I actually went to the Harris Museum, but rather than seeing any giant moles we saw a rather good exhibition by Shirley Craven and the Hull Traders, which I'd certainly recommend if you happen to be in Preston.

I haven't been to Preston before, and I have to say that I was pleasantly surprised by it. I'm not sure what I was expecting ... perhaps a rather industrial town, but no, the centre of it at least was full of old architecture, and all the people we met were very friendly (particularly those in the Harris Museum, who seemed so encouraged by our enjoyment of the place that they insisted on imparting all their knowledge). Of course, Preston also gets brownie points from me for getting my car through its MOT despite the bump in the back and the missing rear windscreen wiper. So anyway, here's a pic of a row of old telephone boxes O and I came across in Preston and were looking particularly photogenic.

I wrote in my last post about the mini saga of getting from the centre of Preston to the garage where we'd left the car. I told how we hadn't known the bus route and had ended up getting off at a stop rather a long way from where we'd wanted to be. Well one of the benefits (or possibly the only benefit) of this diversion was that we had the opportunity to stop on our walk to the garage to take a photo of the rather wonderful sunset. At least I think it was a sunset, rather than the moon. Everything was foggy. Everything was frosty. The sky was white. The sun/moon was also white. I haven't changed the colours or converted the photo below into black and white, but this is the scene:

Do you think it's the sun or the moon? I think it's the sun (it was only about 2.30pm) seen through the fog, but it could be either.

When it wasn't foggy we had a couple of evenings with wonderful sunsets. We had brilliant views of these from the cottage as it was some way up a hillside. Here are a couple of the lovely sunsets we saw:

The opposite end of the day was the most active time at the bird table in the garden directly outside the kitchen/living room. Unfortunately I didn't manage to get a photo of any of the chickens pecking away at the food on top of the bird table - something I hadn't seen before so I found it quite amusing - but here's a photo of one of the cockerals that came to snaffle some of the scraps on the ground:

And the reason for most of the scraps on the ground - other than the chickens and occasional grouse that would also come and scrounge the food on the top of the bird table - were the little birds. Mainly these were bluetits, but there were also great tits, nuthatches, chaffinches, robbins, sparrows, and various other little birds. Here are just a couple of photos of some of these to finish off my little holiday gallery:

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I'm not sure what's happened with the formatting of the sunset photos. There doesn't seem to be a lot I can do about it unless I delete and re-upload, and quite honestly I can't be bothered ;oP I'm sure you'll cope :o)

Splosh and crunch

I got out of hospital on Friday as I thought I might :oD It's been great to be free! I went back to Mum's for a few days and had some wonderful TLC, and then despite Mum's (understandable) worry about my coming away so soon after being so poorly, I made it to Lancashire on Monday with O for some of our curtailed holiday.

When I left the hospital on Friday I was still very much inflated with copious amounts of fluid retention, which was making me terribly tender and miserable. It does appear to be shifting now, thanks to the furosemide, although I'm still sploshing about in my own body somewhat, but nowhere near as much as I was. It's such a relief to have got rid of some of the water :o)

So O and I set off from Edinburgh on Monday afternoon and had a very lovely drive through the countryside along the A702 and A74, in bright sunshine and with pretty views. Just as I was feeling that I could do with some lunch and a rest we happened upon the Annandale Road Chef, which, being a motorway service station, you wouldn't expect to be anything special, but it was extremely lovely! How often do you hear that said about motorway service stations?! As we drove in there was a small gaggle of white geese on the grass verge, peering in our direction and looking rather welcoming, and then as we sat in the coffee shop inside we had a lovely view over a lake with ducks washing and preening themselves, and dipping in the water, and swimming about. We didn't make use of it as it was a bit chilly, but there was a patio area next to the lake that looked as though it would've been a nice place to sit out in the summer. It really didn't feel at all like a service station, and was most relaxing and refreshing :o) When we went back out to the car we were greeting by one of the geese and several ducks. They were extremely tame and followed us right up to the car. In fact, at one point I thought that perhaps they were going to jump into the car to munch on any crumbs they could find on the floor (which would've been quite a lot as it needed a good clean out). We sat for a while with the door open as the ducks and goose came up to say hello, and nibbled my fingers. I've been nibbled by ducks before, but I think that was possibly the first time I've been nibbled by a goose. It's not unpleasant ... not something I'll take up as a hobby, but it didn't hurt. After the goose had had a little munch on me and it was seen off by drake that wanted his turn, I was about to close the car door when I noticed a tiny chaffinch sitting on the wing mirror, which promptly hopped onto the door frame and sat watching us. As it leapt up there a wagtail popped itself on the wing mirror and it too watched us, although a little less intently. The chaffinch was so tame it almost let me touch it. I didn't want to frighten it off so I stretched my hand out ever so slowly, and I must have got within 10 cm of touching it before it got a little too nervous, but it didn't fly away; merely hopped sideways along the door frame. It was beautiful and so delicate. I could see every tiny little, rusty-coloured feather, and the slight up-turn of its beak at the very end; it's beady, little, black eyes keeping an inquisitive eye on me, but generally unafraid. I think it only flew off because it realised that we didn't actually have any food to give it, but I did enjoy it while it was there :o)

So we drove on and the A74 turned into the M6 when we hit England, but the far north end of the M6 isn't too bad and the traffic wasn't horrendous so the drive was okay. O and I had half arranged to meet a friend who lives in Cumbria at the Tebay services just past Penrith. As it happened this friend was too busy to meet up (very sad, but maybe we'll see her tomorrow), but we decided to stop for a cuppa anyway as we'd been told that these services were also particularly nice. They are. There's a farm shop; a lovely cafe with huge windows that look out onto a view of a pond with ducks, beyond which is an expansive field that gives way to rolling hills of green and purple. Although the sun was beginning to set by now the day had been bright and cheery and I could feel myself begin to relax into holiday mode as I sat there drinking a decaf latte and breathing in the life of the countryside. We had a little mooch around the farm shop before heading off for the last 45 minutes of our journey to Barnacre Cottages where we're staying in The Piggeries (how ironic given my recent illness with swine flu ;oP ). Although Barnacre Cottages are only a short way off the M6 the road between them is so small, twisty, and turny that it must take about 15 minutes to drive up here, but it's worth it because it's lovely.

So we arrived, and I pulled in to the little parking alcove for The Piggeries, and I reversed to straighten the car up, and I crunched the car into the wall behind, and the back windscreen smashed into smithereens, and the boot panel was dented in a big way, and the windscreen wiper was ripped from the car. I wasn't best pleased with myself. After a little frustrated cursing at myself I got myself into organising mode and began with phoning Motability, through which I lease my car. They were terribly helpful and sorted out an appointment for us with Autoglass to get the windscreen fixed that night. Unfortunately the only time Autoglass could fit us in on Monday night was 'sometime between 11pm and 1am.' No problem, they were going to come out to us to fix it ... except then it turned out that they couldn't do that because it was too damp in the open air for a new window to stick with the heat-fixing system (or whatever. It was all very technical and I'm not up on fixing car windows, funnily enough). So it turned out that we'd have to go to them, and they were in Bolton, which turns out to be almost an hour's drive away from Garstang (the nearest town to where we are). We had a call from them around 10pm to say we could start making our way over, so we piled into the draughty car - now with a perfectly clear view through the back on account of there being no window - and drove back along the twisty, turny, and now very dark road from the cottages, and then on to Bolton. It's slightly disconcerting driving along a dual carriageway/motorway with no back windscreen, and the strange sucky sounds that whistle through the car when another vehicle overtakes. Thanks to sat nav we got to Bolton and found the Autoglass place without a problem, and were promptly greeted by a friendly guy who sat us in a warm office with a TV, remote control, and free coffee machine, while he got on with replacing the back windscreen. It wasn't how I'd planned my first evening of the holiday, and I'm sure it hadn't been in O's plan either, but given that it ended up being in the plan it was okay. And then I noticed a sign that said that after you'd had your windscreen replaced then you couldn't drive at high speed. What constitutes 'high speed'? I asked the friendly guy, explaining that not being able to drive at 'high speed' could be a problem as we had to go on the motorway to get back to where we were staying.
'Where are you staying?'
'Not far from Garstang.'
'Garstang?!' He sounded incredulous, and aghast that anyone would stay anywhere near Garstang.
He sucked in air through his teeth and tutted. 'Well, hmm ... I can let you drive up to 60 miles an hour, but definitely no faster than that.'
You know, it's actually really rather scary driving 60 mph and less on the motorway, even at 1am when there isn't a great deal of traffic on the road. Mind you, the scariness wasn't helped by an ever-thickening fog that began to engulf us as we drove back. In fact, once we were off the main road and back on the dark, narrow, twisty, turny road heading towards the cottages the fog was so thick that had it not been for the sat nav showing the existence of a road ahead I would've doubted there was one. It was a very gothic drive through the tree-lined, fog-laden country roads, and a terribly, terribly scary one given that I couldn't actually see the road more than a foot or two ahead of me. Funnily enough, driving at high speed wasn't a problem at this stage, with our maximum speed being something in the region of 15-20 mph, but we did eventually make it back, and I didn't immediately reverse into the wall and crunch the car again.

As you may imagine, Tuesday was a day of doing very little, although I thought some sustenance was required so I made flapjack, which my grandmother always called crunch, so it seemed particularly apt. I like crunch, and I like making crunch because it's so quick and easy yet scrummy. O also seems to like crunch :oD In fact I 'had' to make more crunch last night to make sure that we've had enough for today and tomorrow (and although O doesn't know this yet, I'll give her some of it to go home with too).

I'm afraid the saga of the car continues. It's all been terribly complicated. As I mentioned before, I lease my car through Motability, one of the benefits of which is that I get a new car every three years. On Sunday it'll be three years since I got my current car and you may remember my blogging back in November about getting a new one. Now then, a new car doesn't need an MOT, but once a car gets to three years old it needs its first. I was supposed to get my car's MOT done before Christmas, but on the day that it was booked in the car was snowed in so I had to cancel and re-book. I re-booked for a couple of weeks ago, but then of course I ended up in hospital in Edinburgh so once again I had to cancel the MOT. Time has been pressing on though, the MOT needs to be done, the lease on the car expires on Sunday unless it and the insurance is temporarily extended by the garage from which I'm getting the new car. I booked another MOT for this Saturday, except then I was told by Motability that if it were done at the weekend then the paperwork wouldn't go through in time for the lease/insurance to be extended, so they then decided that I'd have to get the MOT done while I was away in Lancashire. They booked the car in to a garage in Preston for today. Fine, except that the guy from Autoglass wasn't sure that the car would pass the MOT after its crunch on the wall because of the big 'dent' and the ripped off windscreen wiper (the car can't fail on a feature it doesn't have, but apparently if it does/should have a feature that doesn't work then it can fail). It has to be said that this has been causing me a considerable amount of stress, as it suddenly occurred to me that if the car failed the MOT then not only would it bugger up getting my new car, but O and I would be stuck in Preston as we wouldn't even be able to drive it back to the cottage until any work that needed doing was done, and who knows how long that might take. Now I know that God has a load of very important stuff to work on around the world, but this hasn't stopped me from praying hard about this situation over the past few days, and during most of this morning's drive to Preston I was praying the fairly basic prayer of 'Father God, pleeeeeeeeeeeeeeease, pleeeeeeeeeeeeeeease, pleeeeeeeeeeeeeeeeeeeeeease get Tommy Crotchet through his MOT. Pleeeeeeeease. Amen.' It's just as well that prayers don't have to have to fancy language, because as you see, this one really didn't have it. However, God is good, and a little after 2pm I received a call from the garage telling me that the car was ready to be picked up and everything was okay. Hurrah!

Having ventured into the centre of Preston on the bus we had to find our way back to the garage on the bus, but unhelpfully it turns out that you can't just go to the bus stop on the opposite side of the road to where you got off the bus in order to go back to where you came. Not in Preston. No. You have to go to the other side of town ... and get a different bus. We went to the tourist information centre for help, where the woman helping us went to ask a woman for help on our query, which didn't instill confidence in us. She returned with the information of which bus to get, but seemed a little unclear as to where the bus stop might be so advised us to go to the bus station, but only a short way up the road we say a stop for the bus we wanted, and sure enough within minutes there it was. We clambered on, I got out the map and followed the route, we got so close to the garage and I was feeling chuffed with myself for my clever thinking of following the map when the bus turned off into a housing estate and, upon leaving the housing estate, turned away from where we needed to go. I rang the bell for the next stop, but the next stop was ages away so we ended up having to walk quite a distance back to the garage. We eventually made it, we picked up the car, we set off on our way back to Barnacre Cottages, and the thick fog rolled right back in. The North West does a good line in fog. If you want to come somewhere and not see where you are then I recommend Lancashire in January ;oP Another gothic drive back through the twisty, turny, country lanes and we arrived back at The Piggeries, where I didn't crunch the car, but did collapse in an exhausted heap in the comfy seat with a cup of tea and piece of crunch as the stress of the day and the saga of the car melted from me. I have phoned the various people I had to phone; the lease can now be extended; the car is booked in for inspection of the repairs that need doing, and the garage doing this are going to come to my house for this; the guy at the garage from where I'm getting the new car was ever so nice and told me not to worry, that it'd all be sorted, I just need to keep them informed as to what's happening.

Now then, will somebody please remind me how one is supposed to holiday? I'm sure they're not meant to involve things like swine flu, near-death, hospital admission, crunching cars on walls, MOTs, and exhaustion. I'm going wrong somewhere, aren't I? Maybe I'll get a rest when I go home tomorrow ;oP

Onwards and upwards ... or rather, downwards

Over the last few days we've been doing the aminophylline weaning. It can take a while to get me off the drip and back onto oral theophylline, but today we eventually managed it, and now all is looking hopeful for discharge tomorrow :oD I usually have a couple of days on the ward between the infusion coming down and me going home, but I'm not going home alone this time, as I normally would. I'll be going back to Mum's for a couple of days of TLC, and then going to Lancashire with O for our slightly curtailed holiday. My mum is understandably worried about me going away, and doesn't really want me to go at all, but I need the break after the events of the past 2 1/2 - 3 weeks, and it's not as though O and I are going to be getting up to a huge amount of activity. The plan had always been to spend lots of time together writing, whilst doing some other nice things around that and maybe meeting up with one or two folk we know over that way. The most tiring bit is going to be the drive there, which RAC Route Planner estimates around three and a half hours, but that's without stops, which we'll definitely be having. Once we're there though, we can relax and have several days there before driving back to Newcastle on Friday. I know that I'll have to pace myself carefully, and that I'll be more tired than I would otherwise have been, but I'm sure O will understand that.

So the aminophylline is down, and I'll be going down 'south' (whilst it's still very much up north). The next thing to get down is the water retention, which is still very bad, all around my hips and middle, tender, and making me more enormous than usual, which I hate. Having the infusion down should help, partly because I don't have the extra fluids going in, partly because the aminophylline was in saline and the salt will have been contributing to the retention, and partly because I can now get more mobile than I was. Then there's the steroids to start getting down if possible. These days my maintenance dose is a whopping 85mg, but while I've been in here it's been put up to 120mg! The trouble is that my lungs notice the slightest drop in prednisolone so I have to reduce it ever so slowly, but again, when I do manage to get it down a bit then it should help reduce some of the water retention as well. I can't wait for that.

You know, for all that I'm 120 miles from home I've done remarkably well for visitors. Obviously Mum and J have been in to see me (and bring me my meals as the hospital doesn't have it own kitchens so can't cater around my multiple allergies), but I've also had lots of others visit too. O, who I'm going on holiday with on Monday, lives in Edinburgh so she's been in several times, as has F. I met both O and F through the Open University, more specifically through the OU Students Association (OUSA) fora, and have built up great friendships with them both and met up with them on many occasions now - sometimes up here in Edinburgh; sometimes they've come down to Newcastle. There's another OU friend, K, who I did the Children's Literature course with, and who also lives in Edinburgh. She came down to Newcastle one day last summer for an afternoon get together with a few other CLit folk, and she came to visit me in hospital during this admission. Then I had a friend from Newcastle visit me. N now lives in Aberdeen and was on her way back there after Christmas, but decided to stop off at RIE to see me :o) And today Wheezy Tux came to visit. Wheezy Tux and I initially met on the Asthma UK discussion boards, and then became Facebook friends. Today is the first time that we've met face-to-face, and it was great finally to meet up as we've missed each other one way or another each time I've been up to Edinburgh before now. It was lovely. Wheezy Tux is lovely. Friends are lovely and I feel very blessed to have so many people who care about me, and very lucky that I can be so far from home yet have friends come to visit. I also have an abundance of get well cards. Some are from folk from Newcastle, but most are from people I've met through the Open University, and today I got a lovely one from a whole group of people I did the Children's Literature course with, only three of whom (and the dog of one of them) I've met in person. Of course, my other friends from Newcastle have been keeping in touch, some through Facebook; some through text, so I really haven't felt alone while I've been all this distance from home. I am ever so lucky to have such wonderful people in my life. Thank you all.

Consultants

I've seen many different consultants during my time here at RIE, and although I've been told the name of the one I'm supposedly officially under I'm yet to identify him. I think he came to see me while I was in critical care, but as I say, I've seen so many that I'm really not sure any more. There was one consultant of note who came to see me in HDU - a respiratory consultant from this ward. He asked me who my consultant is at home, so I told him Dr H.
'Ah. I know him from our Leeds days.'
I nodded.
'He's got a good pair of legs.'
!!! What can one say? I mean, I don't go looking at my consultant's legs (though maybe I ought to).
'He's, um, very svelte, yes...' I trailed off.
'In defence! I mean he's got a good pair of legs in defence!'
!!!
'I mean he's very good at football!'
Ahhhhhh
Notable consultant (also going by the name Dr H, but it's a different H) scurried off looking rather embarrassed. I was left giggling at the predicament he'd put himself in, and the thought of my Dr H having 'a good pair of legs'.

I saw this RIE Dr H on my way into the ward. He saw me. He looked quite embarrassed all over again and busied himself with the hand gel at the door. He seems like a nice guy (I'm yet to check out his legs), and the staff seem to like him, so I've been sure to tell them all about his little faux pas ;oP

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.