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

Today is the tomorrow that you worried about yesterday.

Friday, 29 August 2008


I've been sat in front of my computer all day trying to write my latest essay: 'Compare and contrast the represetation of courtship and marriage in Shakespeare's Henry V and Aphra Behn's The Rover.' It's doing my head in. I've done all the background reading and made all my notes/mind maps, and I have actually started to write the essay, but there's so much I want to include that I'm having to be very careful in how I put my ideas down, because I only have 1500 words to say it all in. It's ridiculous. I'm now a little over half way, with something like 820 words done, and I think I've managed to cram in most of what I want to say about Henry V, even if I've had to be quite economical. I'm leaving doing the bit about The Rover until tomorrow, and am now going to find some brain-numbing activity before I try to sleep.

During the course of trying to write my essay I have come across many a distraction, and I thought I'd share some of them with you, particularly as rather a lot of them are only a mouse click away from my essay, and therefore also from whatever you ought to be doing on your computer (other than reading my blog, of course ;oP ). So here are a few distractions for you:

  • First off let me point you towards a site that I recently added to the list of 'Blogs I Read' on the left hand panel, but which you might have missed. La Tartine Gourmande is a foodies delight, and also has some rather wonderful photos on it. Take a peek, but eat before you go there or you'll end up being very hungry indeed.
  • If you're feeling stressed out and you don't have any bubblewrap to hand then try this site. It's particularly good on 'manic mode', and more satisfying with the sound on than off. Very silly, but it passes away the time.
  • If you want to test your lexical knowledge, and also want to do something useful (in this case donating rice to the UN World Food Program) then visit FreeRice. Be warned though, it's very addictive.
  • Do you like cartoons? Take a look at Karrie Fransman's short comic strips. You'll probably have seen them if you read The Guardian, but they're fun.
  • Once you've done your essay or written that document then how about putting it into Wordle. This nifty little gadget will make a pretty 'word cloud' with the words you've used in your piece, and then you can play with the colours, fonts, layouts etc. Good fun and gives a sense of satisfaction ... or maybe that's just me ;oP
  • Maybe watching a slide show of some wonderful photographs is more your thing. If so, then you need go no further than The Royal Photographic Society's Northern Gallery. There's some stunning stuff there, but then you'd expect that from the RPS.
  • For another game try Scrabulous. Due to some legal wrangling with the makers of Scrabble, Scrabulous has recently disappeared from FaceBook :o( but all is not lost (yet), because they have their own site where you can go play :o)

That's all the distraction I can give you for now, but feel free to let me know of others by leaving a message in the comments section.

Have fun!

Thursday, 28 August 2008

A new discovery

Yesterday evening I discovered that I have become allergic to one of the plants in my back yard. The golden hops plant that I've had for years dies back in the winter, but every summer it threatens to take over the planet and grows so quickly that I swear you can almost see it getting bigger by the second. While I was out in the yard getting a broccoli from the tenty-greenhousy-thing-that-looks-like-it-wants-to-collapse, I thought I'd rescue the eucalyptus tree from the hops that was trying to smother it. I took the scissors to the hops, then pulled strips of it away from the eucalyptus tree ... and then the hops started to retaliate. I very quickly started to develop the tell-tale allergy rash on my hands, then they began to itch and burn, then swell, and then my lungs got grumpy. I stopped the murderous attack on the hops and went to wash my hands as quickly as I could to remove as much of the allergen from my skin as possible, and dosed myself up with anithistamines - double doses of two different kinds, as well as the usual lot I take everyday anyway. The rash crept up my arms from my hands and my hands still felt as though they were burning. My lungs were tight and I felt pretty rubbish really, but thankfully things didn't 'turn anaphylactic', though I rather suspect that they might have done if I hadn't acted as quickly as I did.

Although I managed to stop the allergy in its tracks last night, I still felt quite naff, and today I've had that 'I feel as though I've been poisoned' hangover. There's now nothing to be seen of the rash except for a couple of slightly raised red patches on my left hand, but my lungs still feel tight and twitchy, and my spirometry tests in clinic with my asthma consultant this morning were rubbish, with my FEV1 being only 0.75 litres. For those of you who don't know what this means, it basically shows that my lungs are a pile of pants, because a (female) patient with an FEV1 of anything lower than 1 litre (or 1.5 litres for men) is considered to have severe airway constriction :o( I've had worse spirometry results before, but today's still isn't good, and it still doesn't feel good tonight :o( I'm supposed to be writing an essay, but I think I'm going to give it a miss for tonight, go to bed early and hope that things are improved in the morning.

Ya know, I think I'll be getting rid of that plant in the back yard, and I think I'll get someone else to get rid of it for me ... though I did notice a fair few caterpillars on it so I'll let them have a good old munch away on it, then do that whole chrysalis-to-butterfly thing that they do, and then I'll condemn the plant to death. Pah! I shall get my revenge! See? The effect that vicious, retaliating plants can have on a person are diverse and terrifying ;oP

Anyway, as I was saying, the plant will go when the butterflies have fluttered by, and I will not be slain by creeping tendrils of the golden hops!

Sunday, 24 August 2008

Up north

I'm up in Edinburgh again at the moment, which is why I haven't been here to update you in the last week, but I thought it was about time I wrote something so that you don't all think that I've gone and given up on that breathing thing all together.

I came up on 16th and I'm here until 26th. I've primarily been doing Book Festival things, and have been to lots of talks/readings by lots of different authors about lots of different things. I can't remember them all off the top of my head, but to give a vague idea, I've been to something with Mark Watson talking about his attempts at not being quite so 'Crap at the Environment' (to use the title from his book); I've heard two Canadian writers - Barbara Gowy and Elizabeth Hay - talk about their new novels, neither of which I can remember the title of at the moment, but remember thinking that Barbara Gowy's in particular sounded interesting. A few days ago I saw Yasmin Alibhai-Brown do a kind of autobiographical monologue play that interwove Shakespeare, relating it to her life and her indian-african upbringing. That was hugely entertaining, whilst also being very moving and interesting. Yesterday I went to a discussion about '40 Years of the Man Booker Prize', with someone I can't remember the name of chairing a discussion with Margaret Attwood and Louise Doughty, which was very interesting and also seemed to be being filmed for something or other. Um ... what else? ... Oh yes, I've been to a kind of information workshop thingumy about writing for the radio, which I thought of as preparation for my next creative writing course starting in October that has lots of script writing in it - very informative. Then there was something about self-publishing and whether or not it's possible to be a good author and successfully publish your own work, or if it's actually better to get an established publisher to do it for you - very interesting again, and made the whole idea of self-publishing sound incredibly difficult to do well. Earlier in the week I went to a presentation/discussion whatnot by two people who've written a book called 'The Wrong Kind of Snow' and is about how history has been shaped by the weather. Both speakers/authors were informative and amusing, and I thought the book looked good too, with each day of the year having an historical weather-related story applied to it. Oh yes, I went to see Carol Ann Duffy yesterday (she's an excellent poet who can take you on a journey of all the emotions through her different poems), and she was excellent. And suddenly I can't remember who else I've seen/heard, but it's been quite a packed week.

On Monday evening we (myself, my mum and my step-dad) went to see Nicholas Parsons at The Pleasance in the Fringe Festival, which was funny too, although he wasn't exactly what I was expecting ... not that I could really say what I was expecting. It was fun all the same, and it was good to go to something quite without the Book Festival as well.

Today we've been up to Aberfeldy in Perthshire (I think) to see an exhibition of work by the ceramic artist Lotte Glob. She has her studio up in Sutherland, right up in the north of Scotland, which is where my mother and step-father first came across her work about 20 years ago, but she exhibits and sells her work at various places, particularly in a little gallery/bookshop in the town of Aberfeldy. Although Lotte Glob is Danish by origin (apparently her father was the guy who found that ancient, yet perfectly preserved man in the peat bog many years ago!), she says her work is greatly influenced by the landscape of the extreme north of Scotland. You can see the influence in the ruggedness, the naturalness, the colours, the glazes, the texture, and it's all very interesting ... though way out of my price range.

Other than that lot I've been working hard for my next OU assignment. This next one is officially the last of them for the literature course, but I've missed one out so I'm going to go back and do the one I've missed after I've done this one. It's tough going, because I'm still quite behind, and on top of the work I have to do for the two essays, I somehow also have to find time to revise for the exam, which is on 13th October. It may seem a long way off, but it's not that far really ... not far enough if you ask me! Anyway, I was heartened today by picking up online the mark for my most recent assignment, which I'd felt that I'd rushed and not done as much as I could have done, but I somehow managed to get 87% for it :o)

I'm not sure if you could really call this time away relaxing. In some ways it has been in that I've been doing lots of things that I wouldn't otherwise do, and I haven't had to do any cooking or domestic things (mum likes to do it all and gets slightly hassled if you try to help so it's best to leave her to it). Yeah, I've been looked after, which I guess has meant that when I've sat down to study I haven't had to think about doing anything else, but on the other hand, I've done an awful lot and not had much chill-out, laze around and do nothing time. I've been enjoying myself though, and my lungs have been bearing up fairly well most of the time, but I do find that I get tired quite quickly simply because breathing generally isn't a thing I do very well. Still, I like to make the most of breathing when I'm not fairing too badly at it, and do what I can to enjoy life when it's there to be enjoyed :o) If nothing else, this time away is a good antidote to all the time I spend cooped up in hospital doing nothing but reminding my lungs what they're supposedly designed for.

Friday, 15 August 2008

Different perspectives

I was talking to someone the other day about how much I dislike ITU, even though I know it's often the place I need to be. Having spent so much time in the Intensive Care Unit of my local hospital I know most of the staff pretty well, and they me. They know how much I dislike ITU, and will try to keep me on the respiratory ward for as long as they can and for as long as is safe, because the stress of going 'downstairs' has the potential to worsen an asthma attack. It's a risk to keep me on the ward, but as I'm known so well to the staff then it's a calculated risk, but when talking to this person earlier in the week, she said that I should get used to ITU. Something inside me squirmed when she said this, and on thinking about it more I think it'd be rather shocking if one truly got used to ITU. It's a distressing place to be for several reasons: There's the noise; the plethora of machines that can feel as though they're taking over the environment and your whole being; there's the fact that you're so poorly that you're in need of the place, and it's generally indicative of the medics' concern that you might not survive; and you are surrounded by others in the same position, although with very varied conditions. The bed-spaces in ITU are much bigger than standard, to accommodate the multiple machines and the multiple medics and nurses that so often surround you, and they also tend to have benches that separate each bed-space. Because of this then you have a certain degree of privacy from other patients, which is much appreciated when everything else is so public to all others in the unit, but if you are conscious then you are still aware of what's going on in the bays around you. By the nature of the Intensive Care Unit, patients are very poorly, and often what they're going through is distressing, and does sometimes include death (although, of course, I've come across death on multiple occasions on the normal wards too). Should one get used to this situation? Would it be right to accept this as a normal state of affairs? I can accept that I will sometimes need to be there, but I don't think I will ever get used to the trauma of the situation and all that the place entails. I don't think I want to ... it seems wrong to do so.

I once heard an anaesthetist tell either a junior doctor or a medical student that one in four patients who go into ITU will die there. Although not all that surprising, given the nature of the unit, it is still a shocking statistic, and also shocking that the anaesthetist should say this whilst standing in the middle of the unit where any of the conscious patients (many are on life support so not conscious) can hear. This statistic now rattles around my head every time I go down to ITU, and I also know that having been in ITU on countless occasions that I have been lucky to beat this statistic so far. I'm sure that my 'luck' will run out one day and that the statistic will catch up with me. I know that everyone must die at some point, but I don't want to die in ITU where everything is so impersonal, everything is so mechanical, and everyone is so used to death.

No, I don't want to get used to ITU and all that it stands for. Is that a bad thing?

Monday, 11 August 2008

Wheely varied reactions

I have a powered wheelchair (which I've named Taz) for those times when my breathing is on it's way down and I haven't got the puff to walk, or when I'm just out of hospital and have very little physical energy, but still need to get out and about. I don't want to use it all the time, because I want to be able to walk and make use of my legs when I'm able to, but it is ever so useful to have Taz for those times when I need it. Most of my friends are now used to it, and some of the folk at church have seen me out and about in it too, although not all that often. As most of my family don't live in the area they haven't really seen me use Taz, but they know that I have it and they're used to seeing it in my flat when they visit. It's taken a bit for them to get used to the idea of my needing it, but no more than me ... in fact, when I first got it sometime last year I felt very self-conscious when I was out in it, and still am to a degree when I'm in my local area. This isn't because of any adverse response I've had, but because I know that I confuse my neighbours by sometimes needing to use the powered wheelchair, but sometimes being fine to walk about. Actually, it can be quite amusing at times seeing the confusion on their faces, but if they don't ask why I sometimes use it and why I sometimes don't then I'm not going to go out of my way to explain - I have no obligation to, after all.

Although it's tremendously helpful to have Taz during those times when I need to use it, it has taken a lot to get my head around the idea of it and to lose most of my self-consciousness about it. People do look though, and it's quite surprising how varied their reactions can be, both in people I know and those I don't. The important people in my life know why I have Taz, but it does seem to surprise some who know the reasons for it when they see me using it ... it feels to me a little as though my identity has changed for them, because I suppose it makes my disability kind of visible. There are those who know me, know that I have Taz, and have seen me use it, but not frequently enough for them necessarily to remember that I have an electric wheelchair until they are reminded by seeing me in it again, and each time that happens I see something not quite discernible fleetingly pass through their mind.

On a few occasions I have gone to church in Taz. The first time I did this felt like a really big deal to me, I think because it meant a lot of people who knew me on different levels 'seeing' my disability, which I don't like to think of as being my identity, but which I think is a part of my identity in a lot of people's minds. Anyway, because I can't actually fit the electric wheelchair into the car then I only go in it to church when it's a nice day/evening and I have the time to trundle my way there and back. Most of the time I can manage church by driving there anyway, as there's usually little need to walk far once there, so it's a while since I was at church in Taz. In fact I didn't even use Taz for church last weekend, despite only being a few days out of hospital, but all the same, after the service, one member of the congregation asked me how my chair was. It took me a little while to work out what she asking after, and I wondered if I'd recently made some passing comment about thinking about getting a new armchair or something (which I haven't been thinking about so wouldn't make sense to me either). The person who asked is one of those I know relatively well, but she hasn't seen me in Taz all that often, although I did bump into her (not literally) while I was in it shortly before my most recent hospital admission. All the same, I thought it rather an odd question and, after she'd explained that she meant my electric wheelchair, I wasn't all that sure how to answer. I mean, what do you say when someone asks after a piece of mobility equipment you happen to need to use at times? It's a little like asking the gentleman down the road how his walking stick is, or the woman who lives round the corner if her zimmer frame is okay. It's not that I mind ... it just seems a little bizarre.

The strangest reaction I've had to date was last week when I was in town. I was trundling up the main shopping street in the city centre, half watching where I was going whilst also gazing into shop windows rather mindlessly. I hadn't gone all that far up the road when I woman I'd never seen before, and who was sitting on one of the benches in the street (it's a pedestrianised street), caught my eye and said 'Excuse me.' I stopped beside her, wondering what she wanted, and she said, 'That's a nice little chair. Where did you get it?' A little confused by this random interjection into my thoughts I replied that it was from the NHS, at which she smiled and asked, 'It wasn't from the Freeman, was it?' Still confused, I answered that I had indeed got it from the Freeman Hospital, and then waited for her response. There wasn't one, so I trundled away again, still rather confused by the short interaction, and wondered if this slightly strange woman was just lonely and in need of some human contact, or if this had been some good deed to talk to a 'poor disabled person'. There was nothing about the interaction that made me feel angry or particularly patronised (well, perhaps a little patronised, if I'm honest, but not much), it just felt odd that a random, apparently able-bodied stranger should stop me in my tracks to ask about the origins of my electric wheelchair.

On the whole though, I'd much rather that people ask me if they have questions about my health/disability. I don't have any obligation to answer, and won't necessarily give all the details, but I'd much prefer people ask questions so they can form accurate thoughts and ideas about my situation, rather than make assumptions or be judgmental. I may have mentioned this next thing before, but when I was in the supermarket a couple of months ago a young child was staring at me as I trundled around the fruit and veg section. At one point I was right next to her and had to ask her to move slightly to one side so that I get past her. In all her inquisitive innocence she asked me why I was in the chair. I didn't mind the question at all, and think that children should be free to ask such questions so long as they are aware that not everyone will want to answer them. Her mother, though, was more than taken-aback by her daughter's question and began to reprimand the child. I said that I didn't mind and I took a few minutes to explain that my legs work fine, but that my lungs don't always work very well, which means that I can't always breathe enough to walk. She said that I looked like I could breathe okay, so I told her that while I was sitting down at the moment then my breathing wasn't too bad, but if I tried to walk then I'd get very out of breath and would be quite poorly. The little girl looked a little thoughtful, perhaps slightly confused (I'm guessing she hasn't come across many people with lung disease before), but also satisfied with the answers I'd given. However, her mother still looked cross with her daughter, so I smiled at her, told her not to worry, and said that I prefer if people ask me their questions so not to be angry with the little girl. The mother looked very confused, and I'm not convinced that the child didn't get told off anyway, but it's only through education, and through personal experience relayed to others, that prejudices (and perhaps fear) will be overcome.

Friday, 8 August 2008

In the nick of time

I'm a few days out of hospital now after going in on Monday last week. I phoned the ward to ask for advice, and was so fed up by then that I actually ended up in tears when talking to the Charge Nurse, so he said to go in since they had a bed. My friend K took me in very shortly after that, and it's a good thing she did, because although I hadn't been horrendously awful when I first arrived, I went downhill fairly rapidly, and within hours was struggling considerably. In fact, it was in the first examination that the doc said she'd get ITU to come up to see me, so even though I wasn't feeling desperately ill at this stage, I was was clearly bad enough to cause concern. It's a bit of a worry that really - the fact that my perception of how ill I am has deteriorated even more, as a result of being so used to feeling poorly. So ITU came to see me, and you know it's not a good sign when they listen closely to your lungs and then tap the stethoscope to check that it's working - an indicator that they can't hear air moving in or out of my lungs. I really hate ITU (I've written a bit about that before), and the ITU team know this too, so they try to keep me on the ward if at all possible, because they think that the stress of going 'downstairs' may make the attack worse. It's a bit of a gamble to take, I suppose, but I know that they'd take me if they absolutely had to, and despite the trauma and upset of it I'd go.

I struggled on all through Monday and Monday night, and then Tuesday and Tuesday night. No sleep. No rest. No relief. Sometime in the middle of the night on the Tuesday I got really scared and ran out of energy to fight on. You may remember that I'd been struggling at home for quite some time and was already tired before I went in, so by the early hours of Wednesday I was beyond tired and felt as though I just couldn't go on any more. I prayed with all my heart, and despite the late hour I texted some friends, including an old friend who's a vicar. He usually turns his mobile off at night, but that night he had it on and was awake. He picked up my message quickly and prayed fervently for me, and I'm sure it's because of his prayers that I'm alive today. I got beyond fear and reached a point of calm acceptance of the situation - that I had no fight left and was about to die. It was a very tranquil peace, and although disappointed that I'd reached the end of my life, I wasn't scared any more ... and then I started to slowly improve. I could feel the drugs that'd been continually pumped into me for over 36 hours begin to take effect, and that gave me just enough of a boost to push through the last few hours. The nursing staff were concerned, and could see how exhausted I was, and they'd requested ITU come up and assess me again, but everywhere was busy, ITU were taking their time, and the staff on the ward were having a heavy night with a lot of 'poorlies' to take care of and only two qualified nurses and one health care assistant (the usual nursing staff level during a night shift on that ward - and 30 patients). The nurses would come and sit with me, hold my hand, talk to me, just be with me whenever they could, but they couldn't be there all the time, which is part of the point of ITU/HDU. Anyway, by the time ITU came up again my lungs had at last settled a fair bit, even enough to sleep! ITU didn't take me off their list though until Friday.

After the fight comes the Big Sleep, and I did my usual of two days sleep, with a maximum of five minutes wakefulness at any time, before being plunged back into an exhausted, collapsed unconsciousness. I emerged from this strange sleep sometime on the Friday, and although still very tired, I could then stay awake for longer than five minutes if I wanted to, and then on Saturday I got out of bed and sat in the chair for the first time. It's amazing how exhausting it is just to sit in a chair when you've spent days in bed (and of course fighting for breath and life), but it truly is hard work, so it takes some pushing to make myself stay sitting in the chair, but I know that's the only way to begin to regain some strength. I managed to get myself 'good' enough for discharge by Tuesday, and I made it home around 5pm on Tuesday evening. It's fantastic being home, and even better that I can breathe more easily than I could for quite some time before I was admitted, but it also very tiring. When you're in hospital you don't have to do anything except concentrate on getting better, but as soon as you get home, particularly if you live alone, then you suddenly have to do everything for yourself. For over a week I'd had to do no more than make my way to the toilet, or before that the few steps to the commode, but come Tuesday night I had to think about going to the shops and then making something for dinner. Going to the shop soon after I get home from hospital is actually part of my post-discharge routine, because I get a bit stir-crazy being cooped up in a small cubicle for a week or more, so I always insist on doing the trip, despite offers from friends to go for me, but it's still hard work. It's not surprising, given the change in pace of things, that I'm now so tired again, but it does frustrate me a little, because I'd so much like to be out and about and making the most of life. Oh well, it'll come.

At the beginning of August each year brand new doctors are let loose on the wards. This year it was 6th (I think it's always the first Wednesday of August). I'm always extremely wary of finding myself in need of hospital care when the new F1s start on the wards. It's not just that they're brand new and, although qualified, still have a lot to learn, but also that they don't know the staff they're working with, they don't know the ward they're working on, and they don't have experience to fall back on. My asthma doesn't quite fit the text book description of it, because of it's severity, and then there are all my strange allergies on top of it, so I need my docs to be really on the ball and not only have text book knowledge of conditions. I know that they have superiors to call upon, but that all takes time. Anyway, the upshot of this is that it makes me a little nervous to be in need of hospital medical attention on the date of the new-starters. Now I know that as the 6th approached I was so much better than I had been upon admission, but I didn't want to hang around for the change over if I could help it, so I made sure I got myself out of hospital on 5th. Just in the nick of time, and not for the first time on this admission.