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

Today is the tomorrow that you worried about yesterday.

Saturday, 29 March 2008

Totting up

The other morning when I was getting my meds together I began to feel a little queezy at the thought of taking yet another handful of tablets. In a rather negative moment I decided to work out how many pills I take over the course of a week and was shocked to discover that it's over 200! Then there are the nebulisers, of which I take at least 56 a week. It's no wonder I could barely face the small mountain of tablets in front of me. It's not worth not taking them though, and quite frankly I know that I wouldn't survive a day if I didn't take them, so a tossed them into my mouth, took a sip of water and had them clatter down my gullet. Most of the time it doesn't bother me and I do the tablet-taking routine almost without thinking, although I have to keep track of what day it is as there are three different tablets I take once a week on three different days of the week, which can be a little confusing at times, but I've worked out my system for remembering to take them on the right days. It's a bind though and it means that I can never stay anywhere overnight on the spur of the moment, as I was invited to do at my dad's on Easter Monday - no meds means no breathing, and that tends to lead to hospital. Speaking of which, I also worked out the other day that this millennium I have been in hospital somewhere in the region of sixty to seventy times! It's no wonder that I'm sick of the places, although also see them as my second home.

Sometimes I suddenly become aware of the weirdness that is my life - the extraordinary existence that others see that has become so ordinary for me. Sometimes it shocks me. It is though the only life that I have so I will continue to make of it what I can and do what I can while I have it ... pills, nebulisers, hospital admissions and all.

Thursday, 27 March 2008


It's rather too long since I wrote anything here, but then we have had Easter in the middle of things, and I don't know about you, but mine was quite busy. I have to say that I had a lovely weekend though. I ignored the fact that I had lots of OU work to do and an assignment due in next week (I'll have to stop ignoring that fact now), and instead spent the weekend doing nice things. So it started on Friday with a trip up into Northumberland to visit my dad who had my brother, sister-in-law and nephew staying with him. I haven't seen them since August last year and Oliver (my nephew) is now 15 months old and obviously changed a lot since then. He's such a cheery chap and a delight to be with :o)

After we'd had a bite of lunch we went for a drive along the coast, first of all past Druridge Bay and then along to Amble. At Amble harbour we seemed to decide that it'd be a good idea to get out of the car 'to blow away the cobwebs'. It certainly did that! There was a bitter gale blowing and snow blustering around intermittently. The harbour waters were choppy and looked like something from a nineteenth century oil painting, and enormous waves were crashing in ten foot or more sprays over the harbour wall.

On our way back towards the village where my dad lives we stopped at the headland just opposite Coquet Island. I'm not sure how as it appeared to be more sheltered than Amble harbour, but the wind seemed even more powerful, making it difficult to stay standing at times. We didn't venture down onto the beach, but even with staying on the grassy dunes we managed to get wet with 'globs' of foam being thrown from the waves. It was amazingly dramatic, but absolutely freezing so we didn't hang around too long and went back to the cosy, warm house for a cuppa. I then came home and dashed off to church for the Good Friday evening service, which was wonderfully reflective and restored some calm into my windswept head.

Saturday (late) morning was spent with my friend K shopping for food for the following day as we were having Easter Sunday together with another friend, R. Having got what we needed and having taken it back to K's I then wombled back home to pretend to study while K went to the theatre and out for dinner afterwards. I'd said to K that if she wanted to prepare any of the food for Sunday then I'd be quite happy to come round again, and sure enough, around 10pm I had a phone call asking me if I wanted to go and make soup ... so I did. At 1am we'd finished making the butternut squash, ginger, orange and corriander soup and realised it was Easter Sunday so celebrated with a mouthful of chocolate - one of the best ways to celebrate Easter :o)

The Easter service on Sunday morning was lovely - really joyful :o) And afterwards K, R and I went off to K's to make the vegetable hotpot bake we were having for lunch. It's always fun cooking with friends and it makes a refreshing change to be cooking for more than one as well, which makes it feel more ... worth it. I think it's safe to say that we all enjoyed our lunch, which was nicely rounded off with chocolate mousse cake with strawberries and raspberries and yogurt or ice-cream. Just as we were finishing that we were joined by another couple of friends - C and A - for an afternoon of game playing. I love playing games - always have done - and it's great to have friends who also enjoy it and organise times to play them. It was all good fun and of course, being Easter, was highlighted with chocolate :o) After that we all trundled over to church again for the evening service where K and C were playing in the music group and I was giving a testimonial. I was incredibly nervous about doing this, although it'd been planned for several weeks, and I'd been worrying about it quietly for most of the day ... and the day before. However, it all went fairly well in the end :o) Once the service was over we stayed for a cuppa and then all went back to K's again, with yet another friend, CM, to chat and make chocolate shapes. A had brought a special chocolate melting kit with moulds, so we had fun melting down Green & Blacks chocolate into gloop, pouring it carefully (or not so carefully at times in my case) into the little moulds and resolidifying it in the freezer and fridge. We were all a bit chocolated out by this time though so didn't eat very much of it, instead opting to come home with little parcels of chocolate shapes, some of which I still have in my fridge. I think I got home around 1am, but I'd had a really lovely day.

The long weekend was rounded off with another trip up to Northumberland on Monday to see my dad, brother, sister-in-law and nephew again, although I didn't get up there till early evening as I went over to the new vicarage to 'help' strip wallpaper. My lungs didn't like that very much though so I didn't hang around long. I arrived at Dad's in time to help give Ollie his dinner and then his bath. He loves baths and it was a very giggley affair with lots of fun and not too much water escaping from the bath itself :o) Bath time is obviously followed by bedtime when you're 15 months old, so I stayed around for Oliver's story and gave him a cuddle while he had his song. It was lovely. Then it was adult time - dinner time and chat, which again was really lovely and very relaxed. Dad asked if I wanted to stay the night, which would've been nice, but as I didn't have all my meds with me I wasn't able to, so sometime around 11pm I set off home in the snow.

Yes, all in all it was a very enjoyable, relaxed, fun-filled, friendship-filled weekend :o) A good Easter :o)

Wednesday, 19 March 2008

Natural beauty

This is a genuine photograph taken at the North Pole, by the friend of someone I've met on the Open University forums. I think it's an amazing photograph and shows just what a beautiful place the world is. I wanted to give credit to the gentleman who took the photo, but I was told that he wasn't bothered about that, just that he wanted it passed on so that the world can see what a wonderful place the world actually is. Amazing, isn't it?

Monday, 17 March 2008

Dizzy space

There are few things that really rile me, but one thing that does is the inappropriate use of disabled parking spaces. I got home from the cinema on Friday evening to find an unattended taxi parked in my disabled space outside my house. It wouldn't have bothered me if it were being used by someone with a disability, or if the taxi were dropping off a disabled person, but because it was just parked there (and I've yet to come across a disabled taxi driver), it rattled my cage. I found somewhere else to park, came inside and wrote a note to the driver, which I then left under his windscreen wiper. I can't remember exactly what I said in the letter, but it was something along the lines of him (I presumed it was a him) being inconsiderate to the needs of disabled people, and that he should be thankful that he is privaledged enough to have the ability to walk reliably. I suggested that he make the most of this ability to walk as not all are as fortunate as him, and that in the future he more fully consider those who aren't as privaledged as he is. I requested that he move his vehicle, and also pointed out that if actually he is in need of a disabled parking space then he can contact the council and they will be able to help. I then signed off with my name and house number, though didn't expect to hear anything back.

I had a knock on the door this afternoon from my neighbour two doors down. It seems that he is now a taxi driver and Friday night's offender. He was so genuinely apologetic for parking in my dizzy space, and so humble about it, that I almost found myself feeling guilty for being so curt in my letter. I haven't actually succombed to the guilt, and have reminded myself that he was still in the wrong, but his knocking on my door and apologising has restored my faith in people again. It's so refreshing to have someone actually admit their guilt and apologise for it, when so much of the time attitudes seem to be that anyone can do anything they like, however arrogant or ignorant, and not have to be accountable to anyone.

As I say, abuse of dizzy parking spaces is something that riles me, but the humility of my neighbour has reminded me of the good nature of most people, even when they do something they shouldn't. He didn't have to knock on my door, and he didn't then have to apologise. He could easily have bombarded me with excuse after excuse if he'd wanted to defend himself, but he didn't. Instead he was gracious, acknowledged his wrongdoing and said, 'I was so embarrassed. I'm sorry. I won't do it again.' I applaud him for his humility, and I thanked him with a smile when he left.

I wonder, and leave you with this question, how you would've responded to my letter. Would you have been as gracious and humble as my neighbour? Would you have tried to defend yourself with excuses? Would you have knocked on my door to apologise? Would I? I honestly don't know ... I may have been too embarrassed to have felt able to face the person I knew to be in the right. I may have felt resentful that my wrongdoing was so firmly pointed out to me. I like to think that I would have been as gracious as my neighbour, but I cannot say with certainty that I would. What about you?

Saturday, 15 March 2008


It's a few days now since I went to this, but I did promise that I'd let you know what it was about and what it was like, so here it is ... It's basically the story of a young woman whose husband dies suddenly and unexpectedly, and her subsequent finding of a compilation tape that he (Chris) made but never gave her. She thinks there's some hidden meaning in the tape, and becomes obsessed by this (and also for a while obsessed with the idea that he's trying to send messages 'from the other side' through the ether, recording the static in empty rooms). Chris' friend, Martin, is enlisted on this search for the secret message in the compilation tape, and eventually they work out that the message isn't in the music itself or the words of the songs, but in the song titles. Chris was deaf (and is played by a deaf actor), in the story having lost his hearing after a previous car accident in which Martin was driving several years previously (which is where a tense relationship between his wife and his sister, and between his sister and Martin come into the play), and they work out this vital piece of the jigsaw about the song titles being the important thing after realising that one of the songs on the tape was written after Chris lost his hearing and so would never have heard the music (he was profoundly deaf).

Although 'Static' may sound like loads of love stories, especially ones in which someone is left behind after a death, it was actually quite different from most things I've seen either on stage or TV/film. I think this was largely down to the extensive use of BSL (British Sign Language) in the play, which was also used in a very interesting way. Sometimes it was used as a direct translation of the spoken dialogue, or the lyrics of the music that was playing; sometimes it was the other way round and the dialogue was a direct translation of the sign; sometimes the dialogue and the sign complimented each other, almost like conversations within conversations; sometimes the sign was an interpretation of the dialogue or the meaning within the dialogue/music; sometimes it was a separate conversation; and sometimes the context in which the words were being spoken and signed simulateously were different, even if the words/signs themselves were direct translations. It was all very interesting.

It's been ever so interesting to think about it afterwards as well and to wonder about the accessability of the play as a whole to a wide audience. As I can sign I didn't miss out on what was being said in BSL and the complexities of how it was being used, or the different messages that were being given (and also how bits of the plot were revealed in sign before they were revealed in spoken dialogue). I wondered if those who couldn't sign, which would've been the majority of the audience, would feel as though they'd missed out. The friend I went with doesn't sign, and she said that although she didn't know what was being said, she found it fascinating to watch, and that the use of BSL, and it's integral part in the play, added something to it. She obviously missed out on the nuances, but she said that she was still very much able to enjoy the play and to follow what was happening easily, especially as sign is so expressive that you cannot but understand the general mood of the conversation.

Then I began to wonder about the accessibility of the play to deaf members of the audience. The music is so vital to the play, and so entwined within it, that I wondered if certain aspects would be missed by a deaf audience. I think they probably would, though I can't say that with authority as I didn't go with anyone who was deaf. On the other hand, however, both the actor who played Chris and one of the directors were deaf, and sign was used in such an integrated way, even in through some of the music, that it's obviously something that would've been thought about extensively. Fascinating stuff, and it's had me thinking all week.

Static is touring at the moment and it's a play I'd recommend seeing. According to the flyer, the places they have left on the tour are Drum Theare, Plymouth; Baby Grand, Belfast; Birmingham Repertory Theatre; and Soho Theatre, London (They've also been at Contact, Manchester this weekend, but I'm a bit late with that one). It's a co-production by two theatre companies - Suspect Culture and Graeae, neither or whom I can honestly say I'd heard of before, but both of whom I'd be interested in seeing more of.

Yes, definitely worth seeing if it's coming to a theatre near you, and if you can't see, then they provide audio description on asking too! There's even braille on their flyer, albeit only saying that it's a new play and a co-production between the two theatre companies. Still, that's more than any other theatre flyer I've seen before.

Tuesday, 11 March 2008

Excuses excuses

I know. I'm sorry. It's about a week since I posted anything on here, and I left it in a bit of a melancholy note. Apologies again. I have a good excuse for not being around, and that is that I've been frantically busy trying to catch up on my OU course work. The course had only just started when I was admitted into hospital and consequently I got three weeks behind. In the past week I've somehow managed to do a hell of a lot of reading for the course, but stayed two and a half to three weeks behind, although I have done an essay in that time too, which was only a few days late and well within the time I was given for an extention. I have to admit that I haven't read any of the text book today, but I have finally finished reading Great Expectations (a marvellous book, if rather a slog at times), so I do feel as though I've done some work. I will, however, have to set to the text books with avengence again tomorrow, especially as I have a tutorial on Saturday afternoon, for which I'm sure I will need to be much closer to the point of catch-up than I am. You may have noticed that I cunningly avoid the notion of working this evening ... I'm, erm ... I'm going out. I'm actually going to the theatre, which I'm counting as study as it's the kind of thing that an arts student should be doing ... even if the play isn't anything to do with the texts I am/will be studying. I can't remember what the play is going to be about - it's called 'Static' - but I'll try to remember to tell you when I get home.

Speaking of the theatre, I went on Saturday too. It was a small, but very good production of Kafka's 'Metamorphosis', which is about a young man who wakes up one morning to discover that he's turned into a giant beetle! (As you do!) It's then about how his family react to it and how they do or don't deal with it. Fascinating stuff, if rather disturbing. The actor who played Gregor - the young man who turned into a beetle - was amazingly agile and did some great acrobatics/gymnastics, largely involving climbing round the walls of the detailed set. He was ever so graceful in his movements and very sympathetic to the part he was playing. All in all it was great!

Well, brief as this has been, and rather shorter than I'd intended, I'd better go as I'm already late for picking up my friend. I will be back though, and much sooner than last time ... honest guv.

Wednesday, 5 March 2008


He knealt down, held my hand, turned his penetratingly blue eyes to me, called me Sweetheart and stabbed me in the wrist with a needle.

One of the things that I find ever so difficult about chronic illness is the restrictions it puts on socialising and opportunities to meet people ... most specifically, potential partners. I yearn for a relationship. I yearn for the possibility of marriage and children, but it seems to me that it doesn't matter who I am as a person, the fact is that the life I lead - with chronic illness - isn't attractive. It doesn't matter if I am a good person with plenty of positive things to offer and love to give; the fact that I live so close to the edge of life so much of the time turns people away. I can fully appreciate that it's stressful for those around me and who care about me, especially as it's a recurrent situation, but it saddens me that my prospects for relationships are so stunted.

I am on the receiving end of many terms of endearment when I'm in hospital - sweetheart, honey, treacle, dear, flower etc - and many of them said by men, but male doctors. They don't mean them as terms of endearment, but as something to soothe the pain they are about to inflict, or the stress of the situation, or their own anxieties about the difficulty I'm having in breathing. I would so love to have someone call me sweetheart and to actually be their sweetheart. There is a hole in my life that I know can only be filled by a loving relationship, and it saddens me so much to think about how slim the chances are of this hole ever being filled, because of the unattractive feature of severe brittle asthma and the shadow of death in my life.

I'm okay on my own. I'm independent and self-sufficient. I have excellent friends, but I do wish I had the company of a man who loved me ... and I wish I had the possibility of children ... a family of my own.

Tuesday, 4 March 2008


My kitchen is a very sticky mess as I've had my first attempt at making marmalade!

I know Seville oranges are seasonal, and only usually around in January and February, but you still hardly ever see them in the shops. Well I saw some recently and bought them with the intention of making marmalade ... and then realised that I didn't know how to do this. Quite by chance, when I was in Borders Books last week I happened to pass one of the tables in the middle of the store that had 'Mrs Beaton's Jams, Pickles and Preserves' book for sale at £2.99. It, obviously being a book on how to make jams etc, has several recipes for marmalade, so I chose one that looked pretty simple, which goes as follows:

12 Seville oranges
2 Lemons
Preserving sugar

Slice the fruit thinly, removing inner pith and pips. Weigh it, and to each 450g/1 lb add 3 pints of cold water. Leave, covered, in a bowl for 3 days, then turn the preparation into a preserving-pan and boil gently until quite tender. Let it cool, weigh again, and to each 450g/1 lb of fruit add 450g /1 lb of sugar. Bring to boiling-point, skim well, and cook gently until the syrup stiffens quickly when tested on a cold plate. Turn into pots, cover and store in a cool, dry place.

Marvellous ... but when you come to do it you realise that it's not actually terribly instructive. I mean, I sliced the fruit thinly, as described, but didn't at this time cut it into tiny marmalade-sized pieces, and then realised that it doesn't say to do this at any point, so I was left wondering when/if I should do this. In the end I did it during that first period of boiling it up. But again, there is no mention in the instructions of how long this should take, or, indeed, the second period of boiling. Rather a lot of guesswork was involved, but I have to say that I'm rather impressed with the result, especially given how much of it I blagged my way through. I wasn't at all sure that I'd let it boil enough on it's second round so didn't know if it was going to set or be a new easy-pour variety of marmalade, but it seems to have stuck itself together well and it even tastes like marmalade! I'm rather impressed and I have to say, quite proud of myself :o)

Despite this new culinery success I doubt that I can truly call myself a domestic goddess as the kitchen is ever so sticky The floor has that special go-slow feature; the work tops have gained a particular 'sheen' to them; and even the lower units have managed to get themselves dribbled down and one of the cupboards now seems particularly attached to the draw above it, despite repeated wiping down. I'm wondering if I am to have a marmalade-clad kitchen forever more.