Couch potato

I have turned into a couch potato. Okay, it's through necessity, but it's frustrating. I want to be getting out and about, doing things ... I'm not sure what things ... just living. At least I should get to the medieval party tomorrow evening :o) which is a large part of my week or two of sofa surfing, although it is also because I'm still not doing a good job at breathing. Actually, I'm pretty certain that once the adrenaline of keeping myself going for tomorrow's party has disipated, I'll end up in hospital ... probably early next week :o( I'm not looking forward to it. Who would though? In a way it'll be a bit of a relief, because it's been (and continues to be) a struggle, but that fight, even the thought of it, is exhausting. I can hardly bear to think about it, and I don't want to, but I kind of have to, because I know it's coming and I have to gear myself for it. It's a strange thing knowing that you might die in a few days time. Of course I always hope that I'm going to get through, but it's been such a close call so many times, and there are no guarantees that I will survive. I don't give up though - I can't, because if I did then there'd be no reason to fight ... and life would be depressing the rest of the time. That doesn't stop it from being hard, and it's sometimes an effort to keep positive, especially as it's so relentless.

The positive thing about being forced to spend so much time sitting still is that I've actually caught up on my work again and I've written my first assignment for my new course :o) It's a short story about a family who receive a letter from their son who's serving in the armed forces. The only thing is that the day they get the letter is the day of his funeral after he's been killed in combat. It's all very sad, and wasn't easy to write or research. I had to do quite a lot of research to get some of the details right and to make it seem authentic, but although sad, it was interesting. I sent the finished piece off last night, so now I have the nervous wait for the result. I always think it must be difficult marking a piece of creative writing as it's so subjective, and I don't much like being on the receiving end of that subjectivity ;o)

Right then, off to do some more sofa surfing, looking forward to the medieval party tomorrow and trying not to spend too much time thinking about the battle that's most likely ahead of me sometime next week.

Still going; still hoping

I'm still at home.

I got to the pudding and games evening last Saturday, which was great fun, and I'm hoping to get to the medieval party next Saturday. I'm not sure if this is realistic, but I refuse to give up hope, because I've been looking forward to this for months. We'll see ...

I have to say that I feel rather naughty for not contacting the ward when the reg said I should if I was no better. Okay, so falling asleep on Friday meant that I couldn't do so then, and after that was the weekend, but today's Monday and I still haven't phoned. I don't want to. I don't want to go in, and I'm not yet convinced that my lungs are definitely bound for a splat in need of hospital ... but they probably are :o( My peak flow is around 120 and I'm not really able to do very much, so I'm practising staying very still. It may be futile, but I'm still hoping that if I rest a lot and don't go far from the sofa or the bed then I might be okay for Saturday. The positive side of this is that it's meaning I'm doing a bit of study and I've actually started writing the story for my next assignment, which is due in by Friday. This is another good reason not to need hospital before the weekend - too much work to do to be ill ;o)

Oh, I don't know. This is a battle with myself, and I really don't know what to do ... I want to live life while I can. I want to have fun. I want to do all those things that I planned to do ... but I also want to be sensible and look after myself. There doesn't seem to be much of a dilemma in this on face value, does there? But I want some normality, and I'm having a moment's resentment of this horrid disease that is asthma, which is stupid, because resentment won't change anything. Resentment only makes you bitter, and bitterness makes you unhappy, so really it's much better that I let go of the resentment and go back to just getting on with it. I'll give myself a boot up the bum in a moment, but it's tricky while I'm sitting down with the computer on my knee.

I'm in a quandry between what I want to do and what I probably need to do, or will need to do before long. It's horrible.

Accidental decision

I'm not a whole lot better than yesterday, despite the slight increase in prednisolone, and this morning I was still umming and ahhing about whether or not to phone the ward, as instructed by the registrar yesterday. I decided that I'd see how things went a little longer and would make a decision by three o'clock. The plan was scuppered by falling asleep on the sofa for a few hours and not actually waking up until almost 5pm, so my decision was made by accident, because the docs would've left the ward/gone home by then. I will take things easy over the weekend and hope that things stabilise, or even improve, but obviously if they don't, or if they get worse, then I'll get myself to hospital. As I said yesterday, although my lungs are far from good, I don't actually feel as though I really need to be admitted ... at least not when I'm not doing anything - moving around is a different matter - and perhaps a little longer than 24 hours on increased pred will help. I guess I'll find out.

One of the difficult things about an unstable chronic illness is the interruption it causes in one's life. I can't make firm plans for anything. I can't guarantee that I'll physically be able to do something on a particular day or a particular time. I still make plans, and I really appreciate the things that I get to, but there's always the possibility that I won't be able to follow a plan through. Take tomorrow for example - my friend K and I have taken it upon ourselves to organise monthly social events for those 18+ at church. This month we're doing an evening of games and puddings, which is happening tomorrow evening at another friend's house. Obviously as one of the people organising it I've been wanting to go, and I'm going to be making a Becky-friendly and gluten-free chocolate cake (K has celiac disease), but I know that the way things are lung-wise that there's the possibility that I won't be well enough, although it's not going to be a particularly active night, it's not far away (and I can drive there if I need to), and at least one of the people going is a doctor. I'll be disappointed if I don't get to it, but I know that I need to be sensible so I will see how things go. There is though something I very much want to get to the following Saturday, and this is a friend's 40th birthday party with a medieval theme and compulsory costume. I've known about it for months, I've bought the outfit - a medieval queen's dress (not the genuine thing!) - and I've been looking forward to it for ages. I'm hoping above all hope that I get to this so I have to make sure that I'm well enough. It's so difficult when there are things that I really want to do, have planned to do, and then see the possibility that I might miss out. And it's not just that I miss out on one thing, but that plans are constantly scuppered and can only ever be provisional. Sometimes I find that I make it to whatever it is that's planned, even if I'm having a bad time in the run up to it, but then do a spectacular splat afterwards ... it's almost like adrenaline alone keeps me going, and then it runs out so my lungs give up. Although this sounds odd, I don't mind that so much, because at least I've done something enjoyable and the thing that I wanted to do, though obviously I wish that I didn't have the post-event splat. Only time will tell if I make it to the games and pudding evening tomorrow evening, the medieval party a week tomorrow, and if my lungs will do a post-event splat, but I'm hoping that I get to them both and that breathing improves. In the meantime I have to be careful and sensible. How boring ;o)

Which way

My lungs are having a strop and I'm having to wait to see which way they're going to go. I've just been to my out patients appointment at the hospital, and the doc wasn't too impressed, but then neither have I been over the past couple of days. I have instructions to put my steroids up this evening if there's no improvement through the day, and if there's still no improvement tomorrow then I ought to phone the ward and probably be admitted. I really don't want to go in :o( The doctor I saw wasn't my consultant, but the registrar. He's a new registrar, but we have met before when he was an SHO, so he does know me a little. However, I'm not quite as sure as he seems to be that I'll need to be admitted tomorrow, but as he points out, it's then the weekend and beds become more difficult to find and the admissions system isn't quite so straight forward (there's a stupid system that I've talked about before with the A&E department at one hospital in the city, but all the wards being pretty much spread over the two other hospitals in the city, which means that the patient has to be well enough for a transfer). I dunno ... it's tricky. I want to do what is right and what is safest, but I also don't want to go into hospital unnecessarily, or too early so that I'd just be sitting around feeling rubbish, but not quite ill enough for the docs to do anything other than what I can do for myself at home. It's the perpetual dilemma of how long do I wait to find out which way things are going to go ... even though I have instructions from the reg. I'll just have to hope that my lungs decide to play nicely and pick up.

The other decision I've had to make in the past week has been whether or not to tell the OU about the difficulty I had in my exam with the invigilator talking to me throughout. It's been tough, because she was a lovely woman, but after talking about it with several people I came to the conclusion that I did need to tell the university. While I'm fairly certain that I've done enough in the exam to pass, the distraction of having an invigilator speak to you could, for some, make the difference between pass and fail, so I thought I had a responsibility to them to say something. As it turns out the OU were pleased that I did tell them, and they have been incredibly good. They apologised profusely, took details of what happened and who the invigilator was; they've said that they'll send a special circumstances form on my behalf to the script markers explaining what happened during my exam, and they're also going to address the matter with the invigilator involved. I said that I didn't want to complain as such, but suggested that perhaps this person should attend some retraining. However, it turns out that she was at retraining earlier in the year, which obviously didn't sink in, and unfortunately it seems that as a result of this lady's inability to invigilate my exam properly she's probably lost her job. Well, that's not quite how the person at the OU put it, rather that 'we don't think we'll be using her again.' Oops. I do feel a little bad about this, but then she was rubbish at the job she was supposed to be doing, and if it saves anyone else from going through the same thing, and possibly failing their course as a result, then maybe it's for the best.

:o/

Beginning again

I have no time to take a break from study as my next course started 9 days before the exam for my last course. However, this new course is back to creative writing, which is what I really want to be doing, and I'm hoping it'll be a bit of a slower pace than the literature one. I'm still very much in the process of catching up, and although I should be just about starting week 3 today, I'm actually only nearing the end of the material for week 1 :o/ I have actually written something today though. It's only short, and not at all honed, but it's my first bit of creative writing since finishing the last CW course I did that finished this time last year. What I've written is for a short activity/exercise in the course book, and I thought I'd share it with you, but bear in mind that although I've done creative writing before I've never written anything in this genre before. Here you go, here it is:


Breath of Life

I don’t know what I was looking for, or who I was looking for, but I found myself scrabbling away in the dirt searching for something. None of the boulders beneath me seemed to hold any of the answers, and no matter how many I struggled to lift, I didn’t find any trace of another being. I didn’t understand. How could nobody else have survived? Where was everyone? Perhaps I was looking for an answer. Perhaps I was looking for my shoes.
I scrambled over the rubble of what had only yesterday been the majestic city centre theatre, with shards of broken glass and knife-edged chunks of brick cutting into my hands and feet. I hardly noticed the pain – my focus was on shifting the rocky debris to find whatever it was that lay underneath. Surely there must be something, someone. Where? I yelled, but my voice was consumed by the rubble around me. I yelled again, louder, hoping that I might hear a returning cry, or at least the echo of my own voice reverberating off the ruined streets, but it was as if the deep crevasses that now ripped through the roads swallowed up every breath of sound. Every breath of everything seemed to have vanished, except for an unnatural whisper of wind that occasionally flurried around me, whipping up the dust, making me choke, and briefly obscuring the perfect summer’s day sun from sight.
It appeared that I was the only person to have survived, but more ... there was no trace of any other being – no bodies in the demolition. I hadn’t really noticed till now, but where the hell was everyone? Why weren’t the gullied streets and collapsed mounds of shops strewn with ex-shoppers? Had they all run for shelter? But where? There wasn’t anywhere left standing that could have hidden a swarm of Saturday morning folk looking to part with their money. And anyway, if there’d been a scramble for shelter surely there’d have been some left behind and caught in the collapse of the world around them? But no, nobody, only an empty buggy standing upright and undisturbed; a bicycle still propped against a lamp-post that was now bent double as if in pain; and the multi-coloured arms and legs of unworn clothes escaped from the crumbled shops, giving the illusion of life as they waved and danced in the mysterious breeze. I sat on the heap of the theatre and realised that was it – that was why I had only just realised that I was alone. I’d mistaken the ghosts of unreal people for wounded survivors reaching out for help and the dead scattered like beans. The wind was blowing life into the cheerful array of textiles where there was no life ... except me.

Opening up

We're doing a series of weekly meetings at church at the minute called 'Opened Up'. We've had 5 of the 6 Wednesday evening meetings so far, which are getting us to look both as individuals and as a church how we can open up - where we're up to at the moment, how we imagine things ought to be, where we might like to go, etc. As I say, it's not just thinking about these things on an individual basis, but more to do with looking at the church, our church, the community around us and opening up to them. I haven't been able to get to them all, but I've got a lot out of the ones I have been to and I'm looking forward to seeing what happens as a result.

Part of the structure of the 'Opened Up' evenings is that all those who come have a meal together before the meeting gets under way. The catering is being done by a cafe near church called Cafe Bar One, and where I've been before but only been able to have jacket potato with cottage cheese to eat. Cafe Bar One know of my allergies, but haven't really known what they are so for the first couple of weeks of the 'Opened Up' evenings they gave me what they knew I could have. It was great to be provided for, but I was feeling a little miffed that I'd only get a jacket potato on a Wednesday night when everyone else around me got very yummy-looking food. Well, a couple of weeks into the series I had a call from Jez - the chef at Cafe Bar One - who said that he'd really like to be able to make more for me for the church evening meetings than he had been doing. He asked if I could take him a copy of the list of foods I can't have and he'd work something out from that. I wasn't expecting that, but was extremely pleased and so took my list down the next day, although I have to say that I wasn't certain Jez would still feel like trying to make me something more exciting than a jacket potato after he'd seen the 6 page document that is my dietary requirement list. When I took the list down to the cafe Jez wasn't/didn't seem to be terrified by it, but rather said that he was interested and excited. I left my phone number with him and said that he could call me if he had any questions or wasn't certain about anything he could or couldn't use, and then left him to it whilst expecting to receive a call from him during the week. I didn't get a call. However, the following Wednesday I did get a delicious meal of Tuscan bean casserole :o) Jez hung around before the meal and meeting until I came so that he could go through with me everything that was in it, and then waiting for a little while afterwards to make sure that I didn't have any immediate reaction. I didn't. I didn't have any reaction other than, 'Oh my word, this is delicious!' :o) Jez then said that if all went okay then he'd make up some things that are Becky-friendly and that could be easily frozen and defrosted so that I can have some yummy things to eat in the cafe and don't always have to have jacket potato with cottage cheese! WOW! My world is opening up as a direct result of the 'Opened Up' evenings. Okay, so it's not exactly what the vicar had in mind when he planned this series, but this is such a positive thing for me, because I've been so desperately limited in where I can eat out. Peppy's is fantastic, but it's good to have a cafe I can go to as well as a restaurant, especially one that my friends and I sometimes go to after church :o) Hurray for Cafe Bar One!!!

I think it can be difficult for people to comprehend the impact that true food allergies can have on one's life. So much socialising is done around food that actually, when you factor in the complication of an allergy (let alone many, many allergies), you find that social occasions can begin to get limited ... that life gets restricted. It's fine if those around you are comfortable with cooking for you, and if you are confident in the scrupulous care they need to have taken to avoid accidentally killing you, but on the whole restaurants and cafes etc aren't willing to take that risk (and unless I've spoken to the chef at length and I'm confident they have full understanding, then I'm not willing to take the risk either). I think a lot of the reluctance/straight refusal from restaurants etc to cook for me isn't actually a concern for me, but a fear that if anything did go wrong then they'd be sued. I'm not that kind of person, but I guess they don't know that ... and it wouldn't be good publicity to have it in the news that one of your customers unfortunately blew up, stopped breathing and died.

Perhaps I'll do a post sometime with more specific details of my allergies, so that you have a fuller understanding of the difficulties they impose. On a day-to-day basis I'm used to it all now, though I do have to stay on my guard even with products I've known to be safe in the past, because manufacturers have a habit of changing their recipes without advertising the fact.

Anyway, for the time being I'm sending out huge praise to Cafe Bar One, and I'm delighted that my world is opening up that little bit more.

:o)

All done

The exam is over and the course is done. I'm exhausted (in a good way), but I think it went okay :o) I did the exam at home with an invigilator being sent to my house, which was great, but would have been better if the invigilator hadn't kept talking to me and asking questions. She was fine most of the time, but did occasionally try to make conversation ... which is far from ideal when you're trying to write three essays in three hours in an exam. I have the long wait for the results now, which don't come through until the middle of December. It's aaaages, and I get impatient waiting, so I'll have to try to pretend to forget about it.

It's been strange today not having any revision to do after three weeks of doing it intensively, but it's been a welcome break. I don't really have the chance to relax properly, because my next course started ten days ago, not that I've had a chance to start it. I'm looking forward to my new course - advanced creative writing - though I have enjoyed having a day off today, and I'm even watching the telly without feeling guilty about not working :o)

Now that I have a chance to have a bit more of a life beyond study again, I should have more time to spend on my blog again, and something other than study to write about.

Be back soon :o)

Sorry

Sorry for my disappearance of late. I'm rather tied up with exam revision, but after Monday I will be a free woman again - hurrah!!! I can't wait until the exam's over, especially as I'm now having trouble keeping everything in my head - it's so crammed full that stuff keeps falling out.

So yeah, I'm not dead, and I'm not in hospital, I'm just trappped in the land of study till Monday. I'll be back next week, I promise.