Doctor on call

Or rather, the doctor called me. My GP phoned this afternoon about something unrelated to my asthma, but whilst on the phone he managed to deduce that I was 'not good today'. I have to admit that I didn't come clean with him and tell him that I've been slipping for a few days, but I did say that I thought I was going downhill. He pointed out that I didn't have enough breath to speak in anything more than part sentences, which isn't a good sign, but one that I hadn't noticed as I'm too used to it, and he said that my cough was quite high-pitched, suggesting rather tight lungs. He also said that he could hear my wheeze down the phone, which was a little disappointing as I'd been trying to hide this from him by holding the phone that little bit further away than usual. It didn't fool him ... but then he's no fool. Bless him, he seemed quite concerned, but we both know that there's nothing either of us can do until I get to the point of being critical. He suggested whacking my prednisolone (steroids) right up to 60mg in the hope of at least stalling things, even if it doesn't stop the inevitable splat, so that's what I've reluctantly done. I've been on high-dose steroids for about eleven years, and although they keep me alive I hate them with a passion. They have so many nasty side-effects that I'd much rather do without, but I know that I have no choice but to take them. Anyway, my GP was so concerned about me that he landed on my doorstep a few hours later just to see how I was. He knew he couldn't do anything for me, but he wanted to check that I wasn't struggling toooooo much and was okay enough to stay at home. At the moment I am. Bless him, he's so sweet. I know that I worry him, and I know that he truly cares about his patients. I'm so grateful to him and his colleagues at the surgery for everything they do for me and only wish there were some way that I could show my gratitude ... other than keeping on breathing.

So yes, basically I think I'm on the slow decline before a sudden snap and lack of ability in the breathing department. Although now very familiar, this never feels good and you never quite get used to it. I know that before too long I will once again be fighting for my life in an exhausted, breathless heap. Just thinking about it exhausts me. While I wait for the big splat to arrive all I can do is conserve what energy I have and make sure that everything is ready for when it needs to be. The trouble is though that there's no telling how long it'll be until I splat - it could be in a couple of days or it could be an exhausting couple of weeks. Its often this wait that gets to me more than anything. Once I'm in the midst of the fight for life it's awful, yes, but at least I know that one way or another it'll soon be over - I'll either live to tell the tale or it'll finally do me in. Oh well, I guess I haven't faired too badly so far this year so I'll keep my complaints to a minimum.

Birthday

It was my bithday yesterday, and a lovely day it was too :o) My friend H came to stay with me over the weekend and yesterday she made me a brunch of boiled eggs and toast. Living on my own it's a rare treat to have someone make me a meal. Shortly after that I had to drive over to Durham for a tutorial for my Open University course. This wasn't exactly what I wanted to be doing on my birthday, but it was interesting and it'll help with the next assignment (analysis of the Coleridge poem 'The Eolian Harp'), which I'm not particularly looking forward to. We only have face-to-face contact on this course about once a month (though that's more than on my previous course, which was 3 tutorials in 8 months!), and I always seem to come away from them feeling slightly brain-dead. However, yesterday I had lots to look forward to and, although busy-headed, I was quite chipper. So I arrived back home and had an hour to get the place sorted before some of my friends came over to play games, which turned out to be Trivial Pursuit. I've always enjoyed playing games, ever since I was a child, and remember getting quite frustrated that my mum wasn't much of a game player, though she would play sometimes and now enjoys a game of Scrabble. So anyway, H and I were joined by a couple of my friends in the second part of the afternoon for games, and gradually more people arrived and we went down to Peppy's (the one restaurant in Newcastle that can/will cater for me. I've written about them before). Fifteen of us had a lovely meal at Peppy's - an Italian restaurant about three minutes walk down the road - and again I enjoyed it without being accidentally poisoned. This is always a bonus ;o) Having spent two and a half hours at Peppy's most people went home afterwards, but a couple came back to mine to finish the game of Trivial Pursuit, which we didn't actually finish, but called it quits at midnight.

I have lovely friends, and I feel very blessed to have them in my life. There was a time when I was younger (early teens) when I didn't have any friends and I was so terribly lonely. This wasn't because I was a bad person or unfriendly, but because I was desperately unhappy, and in my unhappiness I stopped talking. I didn't speak for four years, and when you don't speak you can't make friends. I think that this experience and my precarious health has meant that I now value the friendships I have very deeply and am so thankful for them. I know that my illness and frequent scrapes with death is stressful to my friends and others who love me, and I think it's a testament to them that they don't run away from me in fear. After all, when you are friends with someone you give something of yourself away. All my friends take the risk of losing that gift of themselves that they've given me if I should not make it through an asthma attack at sometime. Instead of running in fear though, they give themselves freely and celebrate with me, and for that I am eternally grateful.

New Doctor

I've seen a psychiatrist for many years, initially because of very severe depression, but in recent years, since the depression has lifted amazingly, it has mainly been so that I have someone to off-load onto the stresses of my asthma and the regularly of facing my mortality through my severe asthma attacks. Over the years there has been terrible instability in the mental health services, particularly in acute psychiatry so it seems. Between the years of 1999 and 2003 I had nine psychiatrists! This is awful when you stop to consider that of all the medical specialities, psychiatry is probably the area where stability of 'carer' is most important - any patient needs to be able to trust their doctor and needs to be able to develop a working relationship with them, but I think it's particularly important in psychiatry where many patients have huge issues with distrust. Anyway back in 2003 I got a new psychiatrist - Dr M - who was the first permanent psychiatrist in the service (rather than a locum) for several years, and I was lucky that he was an excellent doctor. I saw him about every 4 to 8 weeks just to keep a check on things, but largely we shared jokes. In fact he once said to me that he wouldn't discharge me because I cheer him up too much! :oD That has to be the best reason not to be discharged from your pdoc! Well, the last time I saw Dr M he told me that his job had changed, and whilst he was still working within the trust, and occasionally within the same building, he was now spending more time working in different places within the trust. He told me that he now wasn't supposed to have me on his books and that really I ought to be passed on to the person whose around most of the time - Dr G. We talked about the pros and cons of this, with Dr M also saying that he didn't mind keeping me on if I wanted because '[I'm] no bother at all' and '[He's] become rather fond of me.' He mentioned that Dr G was a locum, which rang alarm bells for me after the instability in the mh services prior to Dr M's arrival, but he said that despite being a locum, Dr G had been here for two years already and seems to have set down some roots in the area. With this information, and considering my occasional need to contact my pdoc when I'm in hospital having a tough time getting my head around near-death through asthma, we decided that I'd be passed on to Dr G.

I saw Dr G for the first time today. He's nice enough, but he mumbles and is quite difficult to understand as he has a very thick European accent (he's Polish). He also seemed at a bit of a loss at what to say to me as I'm mentally so well these days. Then he told me that come July he may not be here any more, which was a bit of a blow after the discussion with Dr M only a couple of weeks ago, and it hardly seems worth my time 'getting to know' him (as much as one ever gets to know their psychiatrist) if he's going to be off again in three months time. We've made an appointment for June, by which time he should know what he's doing, or so he says. Now another complicating factor in all of this is that about two or three years ago the GP practices who Dr M saw patients from changed so that actually he no longer covered my GP practice. However, he kept me on his books because the Dr who was taking over the care of the patients from the GP practice I attend is someone I grew up with being a friend of my mothers. This would have created a very difficult situation, had I been under her care, and I would have been most uncomfortable. Well it seems that the recent restructuring and reallocation of psychiatrists is in part due to this doctor - Dr S - changing posts again. Most of her patients have been passed on to Dr G, as have many of Dr M's, including me, but it seems that there is the possibility of her returning to her prior post come July when Dr G may leave. This would mean that I would then come under the care of Dr S, which I still don't want to happen. It's not that I don't like her - I do - but I grew up knowing her; she knows me in a different way; and I know her in a dffierent way ... I almost know too much about her for her to be my doctor, and I know that wouldn't feel comfortable about it. So when Dr G told me this today I felt that I had to be clear with him and tell him that if he left and if it looked as though Dr S would take over my case, then I'd actually much prefer to put back on Dr M's case-load, even though he's no longer as available as he was. Dr G seemed to understand this, but obviously can't advise at the moment as he doesn't know for certain what his own position is going to be. It all seems rather silly, and I wish that Dr M had either known this situation or discussed this possibility with me at our last consultation. I think he probably didn't know the situation, because he's always seemed to be an honest kind of person, but it seems quite ridiculous that I may end up back on Dr M's case-load after three months brief excursion onto Dr G's.

I have to say that, for all that my mental health is good and stable these days, this is a rather unsettling situation. I really pity those who aren't psychologically well though and in need of stability in their care, because it seems that it's all going pear-shaped in the mental health services again.

I'm a little disappointed at the instability and the possibility of another succession of pdocs. How can you develop a relationship with someone in order to pour out your most inner concerns and worries, when that someone keeps changing?

Bagpuss

When I was a child Bagpuss was my all-time favourite programme, and it was the theme music was the first tune I taught myself to pick out on the piano ... though that might have been helped by the fact that the piano was amazingly out of tune at that time as I don't remember it being very difficult to pick out the Bagpuss tune. Since then Bagpuss has always had a place in my heart and I was delighted when several years ago he was chosen as the Asthma UK mascot, although this is slightly ironic as many asthmatics are allergic to cats. Anyway, today I was pointed towards this highly amusing article about Bagpuss and can certainly recommend a read of it. It's very silly and appeals to my sense of humour so I hope you'll enjoy it too.

By the way, although my lungs have remained in a state of questionable instability over the past few days, I seem to be getting through with the help of a lot of sofa surfing. Aside from being frustrating, this does seem to be helping me get down to some study for my OU course (currently doing literature), though I still seem to have managed to get behind a little this week. It's a never ending chasing of my tail (not Bagpuss' ;oP ), but I'll get there.

On that note, I'd better go and do some work.

Lethargy

I've been tired today, It could be argued that this is because of all the simming, which I'm sure has contributed, but it's not the full explanation. I haven't been sleeping well for weeks, partly because of lungs misbehaving, but partly just because I can't sleep. I'd been hoping that swimming would help tire me out enough to sleep better, but it didn't work so last night I took half a sleeping tablet to knock me out. That did the trick, which was great, but it's left me a bit zonked today. In addition to that, my lungs haven't been up to much today, particularly this afternoon and evening, and tonight they're doing a grand impression of a set of bagpipes. This always makes me tired, I guess in part because I'm not getting as much oxygen into my system as I ought, and also because the effort of breathing is so much more, even when I'm not in an awful state. I'm okay, and I'm pretty sure that I'll be fine, though I do have to be aware that things always have the potential to go extremely wrong extremely quickly. My community care alarm wristband is on and is going next to my bed tonight just in case it all goes pear-shaped, even though I've fairly confident it'll be okay - better to be prepared.

Needless to say, I haven't been swimming today. In fact I haven't done very much of anything today, except for a lot of sofa surfing. I was going to go to Tescos as I'm rather rapidly running out of essentials, but I haven't had the energy or breath for that. If needs be I'll go out in my electric wheelchair tomorrow and get what I can from the local shops, though I'm hoping that things will have improved.

Well I think it's time I went and dosed myself up on the nebuliser and tried to beat this wheeze and chest-tightness into submission.

Night all, and take care.

Wet wet wet

I've recently started swimming again. I used to do a lot of swimming, but haven't done so much at all over the past few years, partly because of the old lungs, but it's also just slipped by the wayside. Anyway, for the past three weeks I've been at least three times each week and I've been really enjoying it. I love that feeling of gliding through the water and with every stroke having your troubles washed away. My mind empties. I focus on my stroke; the kick of my legs; the scoop of my hands through the water; the feel of my muscles working inside my body as they push through the water outside my body. I think briefly about the things that bother me, but for the most part my mind is concentrated on the number of the length that I'm currently swimming, and this is great for emptying the mind and being absorbed in the moment instead of being absorbed in troubles or difficulties.

As I said, I used to swim a lot (I swam for the city as a teenager, before my lungs got too bad and unpredictable), and because of this I tend to swim length after length after length when I go. Unfortunately I sometimes forget that I can't do what I was once able to, so I push myself beyond what I should, but then I'm also determined to make the most of what I can do when I can do it, which is probably why I continue to push myself despite knowing that I ought not to push too hard. Anyway, because of my previous swimming training, and because of this 'make the most of it' attitude and pushing myself, I only feel like I've done any swimming if I do at least half a mile (32 lengths in a standard pool). This is okay, and doesn't usually cause too many problems in the old breathing department. Quite often though I'll get to thinking that if I've done half a mile then I may as well do the rest of the mile. Fine, I used to do that no problem, and mostly I can still do this if my lungs are behaving themselves reasonably. For some reason though, in the past week I've started doing two miles at a time, which, if some of my friends read this and discover, is liable to get me slapped around the face with a wet fish! This really is pushing my luck, but if/when my lungs let me do this it feels really good. Sometimes when I'm in the water I just feel like I could go on forever - it takes me to a different state of mind ... almost meditative. Of course, sitting here in the evening after a two mile swim in the afternoon I certainly feel like I've done some exercise, and I may do in the morning as well, though I did two miles at the pool last Wednesday and Thursday too without feeling too stiff, so maybe I'll get fitter and I'll hardly notice that my muscles have been put through their paces. Don't get me wrong, I don't go off at a sprinting pace - I couldn't these days, though I did used to be able to (oh, how things change). No, I take it steadily and take as much time as I need. I blank out everyone around me, even when I'm aware of others pacing themselves against me, and I ignore the clock, which is helped by the fact that I don't wear my glasses in the pool and so can barely see that there is a clock, let alone what time it is ;oP

Having contacted the paragliding company several times about the possibility of doing a sponsored paraglide to raise money for my resp ward, and having not heard anything back from them at all, I'm getting a little disheartened. I'm wondering now if in the meantime I think about doing a swim marathon to raise money. The idea isn't to do the whole distance in one go (it'd take too long for starters), but over the course of a month, according to places that I've seen this kind of thing suggested before. To be honest, I could probably do it in two to two and a half weeks, but that would be pushing it so if I gave myself a month (or four weeks) that may be more realistic and would allow for a certain amount of lung-splattage. Obviously, if my lungs had a real strop and I ended up in hospital I'd have to put it on hold, or start again, but I'd work out a contingency plan for this situation. I haven't made any firm decisions yet - it's still in the idea-forming stage of things - but I so want to do something to raise money for my respiratory ward as they do so much for me, and have done for years. This seems like a reasonable idea, and perhaps wouldn't scare my friends, family and doctors quite so much as a paraglide ... though I still fully intend to do one when/if I eventually manage to get a response from AirVentures. In the meantime, and whilst I make up my mind about the swimming marathon, I'll consider myself to be in training ... or something.

Small things

There are lots of small things at the moment that are contributing to a general feeling of happiness :o) I thought I'd share some of them with you.

First off, the clocks have gone forward so we're into British Summer Time and the evenings are so much lighter. The sun has been out and actually quite warm (my car thermometer said it was 18C this afternoon!), so that I've actually dared to go out a couple of times without the armour of a fleecy coat.

I'm enjoying the photos I took of my nephew when I saw at the Easter weekend. I have many that make me smile, but this is one of them. He's such a happy little fellow and I think you can see that in this photo. I'll just mention that he doesn't usually have a flannel sitting on his head ;oP

Next up in the list of small things is that my young crab apple tree in the small patch of mud at the front of my flat that passes for a garden of sorts has new buds on it. It won't be long till they come out, and although I know they won't last long, the blossom is so pretty while it's there.

I went to the cinema this evening and saw an excellent film - 'The Diving Bell and the Butterfly' I read reviews for this when I was in hospital and decided then that I'd like to see it. Unfortunately it doesn't seem to be on general release so I had a job tracking down a cinema that was showing it in my area. The small independent cinema in Newcastle (though it's currently lodging in Gateshead) had two showings of it - last night and tonight. In case you can't be bothered to click on the link I'll tell you briefly what it's about, though I'm sure I can't do it justice. It's about Jean-Dominique Bauby who was the editor of Elle magazine in the 1990s. Quite out of the blue, and at a very young age for such things to occur, he had a massive stroke and was left with what's called 'locked-in syndrome', meaning that he was completely paralysed, unable to move or speak, but completely lucid and 'with it' mentally. The one part of himself he could move was his left eye, which he could also blink, and through blinking he was then helped to communicate. There was the 'usual' one blink for yes, two blinks for no, but then the physiotherapist (at least I'm fairly sure she was a physio) hit on the idea of running through the alphabet and watching for Jean-Do to blink when the right letter was reached. Through this method he was able to say what he wanted to, and ultimately dictated a book (which goes by the same name as the film). It was a fascinating film, done with sensitivity, insight and wit, and also managed to avoid sentimentality. One of the things I found very interesting also was how a significant portion of the film was presented from the first person point of view, which is unusual in a film, but one that I could relate to especially in its hospital setting. Yes, a great film and definitely worth seeing sometime if you get the chance ... or get it out on DVD when it's available.

My next thing on my smile list has been that I've been able to breathe enough to go swimming. I'm trying not to over do it, as I have a tendency to when I get any window in my health that's big enough to leap out of (and forget the parachute). We'll see how it goes, but I've loved being in the water again as it's something that I used to do a lot of as a child and a teenager (I actually used to represent the city). Last Friday evening I went to the community-owned pool not too far from me as they have a 'chill out' session between 9 - 10pm on Fridays. This is basically swimming, but they have the main lights off, under water lights on, 'easy listening' music on and use of the steam room and sauna are included in the price (£3.50). It was wonderful, and I'm going again tomorrow night.

I know it's some time now since the ban on public smoking came into force, but I'm loving it. I love that I can go to the pub with friends and not have to leave because I can't breathe, or not go in the first place because I know the smoke will start an asthma attack. I've been organising a group of friends from church to go to the pub this coming Saturday and I'm really looking forward to it. We sometimes go on a Sunday evening after the evening service, but it tends to be a small, select group who feel up to it, where as it's quite possible there may be quite a band of us on Saturday. I love spending time with my friends - they make me smile :o)

Ever since my last hospital admission I've been playing catch up with my Open University studies and have been feeling the pressure. Although I haven't had the time to take proper notes, which may cause problems when it comes to revising for the exam in October, I do appear to be back on track now. I've also, in the past week, managed to write an essay for the course on Charles Dickens' Great Expectations. I only had 1500 words to write what could easily amount to a thesis, so I didn't feel like I could get anywhere near everything said that I wanted to, but I was quite pleased with what I did. I guess time will tell whether it's actually what was wanted.

Oh, speaking of assignments, I got my last one back last week and I was very pleasantly surprised by the mark - 85%

Another very pleasing thing is that one of my friends whose been extremely unwell in hospital is now home. She's still not right, but she's a lot better than she was and, when speaking to her on the phone, she sounds stronger now. I was so worried about her so it's great that she's well enough to be home.

And two final pieces of smiley news are that my sister-in-law is pregnant again, and my friend H is also pregnant! :oD

I love it when the small things build into a big ball of happiness. I wonder, what's on your smile list?