Alone in a crowd

Apart from the cat, Zach, I live on my own. I have lots of good friends, but I often spend long periods of time on my own, usually because my friends are either away or because they work. I don't actually mind spending time on my own as I've always been one of those people who can happily occupy themselves and don't need others around me to generate energy (so I'm a typical introvert really). No, the title of this post comes from the experience of being seriously/critically ill with my asthma.

When you are taken into hospital in any emergency you are quickly surrounded by an awful lot of people. All concerned are usually very good at telling you what they're doing, why they're doing it and generally what's going on, all of which help to keep calm as well as informed. Because I've been in asthmatic emergencies so many times I don't actually need people to tell me what they're doing as they do it, because I already know, but strangely it still helps ... I think it's the contact ... the recognision that I am a person in the middle of the trauma in front of them. However, despite this, these have also been some of my loneliest times.

It's a strange state of affairs being surrounded by people, actually being the centre of everyone's attention, but still feeling incredibly lonely. So why so lonely? Well first off there's the fact that by the time I get to hospital I am almost always too breathless to speak. I am awake, aware, fighting for breath, fighting for life, and trying to convey all the information I know the medics need to treat me. This is why I keep all those laminated cards of vital details, medications, letter from my consultant etc that I mentioned in a previous post - it limits what I have to try to say at times that I can't speak, but gets the information over clearly and succinctly. Great, but I'm still in a position where I can't converse effectively with the people who are around me. I am being stabbed with needles, endless needles. I am being given copious medications. I am having my obs (observations - blood pressure, temperature, pulse/heart rate, oxygen saturations) done every 10 minutes. I usually have an ECG (heart tracing) done. X-rays are done. Oxygen masks of various kinds, delivering O2 in slightly different ways, are switched in attempts to improve my oxygen saturations (amount of O2 in my blood, which should be above 95%, but have been known to go as low as 69% in me in the past). All of this is happening to me as I just try to concentrate on breathing and staying alive. I stay calm because I know that panicking will only make things worse, but in doing so I have to distance myself slightly from all that is going on around me ... all that is being done to me ... all the people who surround me. Fear, though, can thrive when isolated from others who can calm and comfort you.

There is exhaustion too. When you've been fighting for breath for hours on end you soon get worn out. Those detatched people around me are telling me to stay awake, and every time I close my eyes they call my name and tell me to open them, that I can't go to sleep yet. I am so tired that I want to cry, but I can't do that because it'll make the asthma worse, so I tuck the tears away somewhere inside myself and keep them hidden from myself and from those around me. Another distancing.

I'm sure that everyone has experienced that echoey distance of far off voices when you've almost drifted off to sleep in a room with others chatting away. That's a little what it's like. You hear it all going on around you, and you are physically there, but mentally in some far off place that is insular. I wrap myself up in my thoughts. I draw upon the introvert in me to survive this isolation amongst others, but it's hard, and all I want is to be able to breathe and to be either asleep or alone. I am less lonely when I'm alone.

When I physically begin to mend is when I want company. Not immediately, as this is when I want and need to sleep, but a few days later I need to feel the comfort of those around me. I need friendship; physical contact that doesn't entail medical intervention; conversation; to have people sit with me even if we don't say anything. This is when I appreciate time with people and their commitment to me despite my illness. Sometimes it's when I remember the intense loneliness I felt during the emergency. Sometimes it's when I let out a few of the tears that I stored away during the emergency.

Thursday morning

Thursday morning was one of those times that some may call 'a challenge', but personally I call it a bloody nightmare ;o) It began with my not getting to sleep until 4:30am when I needed to be up at 8am for an appointment with my asthma consultant. I don't know why I couldn't sleep, but it meant that I ended up sleeping in until 8:25am, which meant that I was then rushing around in a bit of a panic as my appointment was at 9:20am. Rushing is never good for the old lungs, but I managed not to make myself too wheezy and breathless and left the house only 10 minutes later than I should've done, getting to the hospital only 5 minutes lates. When I parked the car though I noticed that I'd left the lights on, but considering that I was late I thought it'd be okay for just a short while. Now it may well have been fine for a short while, but over an hour later I returned to the car to find the battery completely flat. There was a man sitting in the car next to mine so I knocked on the window to ask for his assistance and a loan of his car battery to jump-start mine. He told me that his battery was fully enclosed, or something (I didn't really understand, but hey ho, that's what he said), but that he could try to bump-start my car. Unfortunately, at this time, there were only the two of us in the car park so he was trying to push my car on his own. He managed to move it, but the road surface was rubbish and we had no hill to work with so he didn't manage to bump-start my car, merely move it from one parking space to another. The poor man looked exhausted and rather disspirited. At this moment a couple appeared and asked if I needed help, and the gentleman kindly let me use his car to jump-start mine. Great! Now, I really needed to get home to finish making a few Christmas presents as I needed to catch the last post guaranteed to arrive before Christmas, but of course I had to go for a drive in order to charge the car battery, so off i went. I decided I'd drive to the coast on a rather long and convoluted route, which would've been fine if I hadn't then run out of petrol on the dual-carriage way! Luckily I was right beside a petrol station so was easily able to fill my petrol can and then fill the car. I continued my drive to the coast and then set off back home.

It was something of a relief to arrive home after all that, but was immediately confronted with huge amounts of cat sick (from fur balls, nothing more serious) in the hall. This is never pleasant, as I'm sure you can imagine. I cleaned it up, only for my own insides to start on a half-hour of squiffiness. Again, not pleasant and resulted in rather a lot of dashing backwards and forwards to the toilet, during which I discovered that I hadn't cleaned up all the cat sick as I stepped in some in my stocking feet! Thankfully the morning ended there, and things improved, but I have to admit that in fear of a repeat of an horrendous morning yesterday, I spent the morning in bed :oD

I hope that your days have been a great deal better than that. Mine have improved since then, thankfully :o)

Distinctly happy

In October I finished a course in creative writing that I had been studying with the Open University. I got the result for this course yesterday ... I got a distinction (a first)! I am extremely pleased and a little surprised. I had no doubt that I'd pass as my grades throughout the course were all good (I think my lowest was 70%), but the ECA (End of Course Assessment) was 50% of the overall grade and there was no guarantee that I'd do as well in that as I did with the other assignments. The other thing to say here is that while brick universities have their first class marks begin at 70%, the Open University's first class marks being at 85%. I can hardly believe that I did so well, because it's not been a straight forward year for me. As I've said before, I've had about 3 months in hospital all together this year; then there's been the death of my friend Laura; and then an upsetting diagnosis of a close family member. I won't go into details of that, as I want to protect their privacy, but just to say that it was a shock and has been stressful at times, particularly when I was first told. So yes, this year has been challenging, which is why my achievement in the creative writing course has been a bit of a surprising, but ever so, ever so pleasing. Now all I have to do is maintain this level of success throughout the next few years of my degree!

I'm also happy tonight because I've just been out to a pantomime - an adult-only improvised pantomime. It was ever so funny (if rather rude ;oP ), and great fun. I had organised a group of us to go when I'd first seen it advertised, and knew that the company doing it - The Suggestibles - usually sold out quickly, so bought fifteen tickets. Everyone seemed to enjoy it, and I had a great time :oD

Okey dokey, on that note I'm off to do a little bit more Christmas present making before taking my distinctly happy self to bed :o)

Night all :o)

By the way

By the way, I haven't forgotten or given up on my Crazy Idea. I still haven't heard back from Air Ventures, which is a little frustrating. I tried contacting them again yesterday, and ended up sending a text, but so far no luck. I will keep on at them, and get in touch with Flyability too, and I'll be sure to keep you posted.

This little piggy ...

I've been rather distracted from my blog this week by an assignment I've had for my Open University plays course. I've had to do a reworking of the story of The Three Little Pigs, but with people, not pigs, and not using houses. It hasn't been easy, especially as I only had a quick read of the relevant course material, rather than studying it properly, because of the time constraint - it was already late (with an approved extention) because of having been in hospital. Anyway it's done and out of the way now. I'm sure that what I've written is a load of rubbish, but I thought it better to get something in and have some chance of getting some marks for it, than not putting anything in and being sure of getting a big, fat zero. So instead of little pigs and a wolf I've done a reworking of the story using three young school friends and a bully from a rival school. I have to say that I am shocked at how violent it is. I'm not a violent person at all, but if you examine the story of The Three Little Pigs at all then you realise how violent it actually is. After all, in the unwatered-down traditional version, the first two little pigs end up being killed. They don't in my version, but they are severely beaten.

I guess one of the things I've realised about the difference between writing plays with other sorts of fiction is that you have to explicitly describe what happens, as opposed to just implying the action or general expressions. I have to say that I felt rather uncomfortable being so explicit with the violence in my writing ... but it didn't stop me. Mind you, I did have to get the assignment done and I'd been putting off doing it, but my extention deadline of Monday has been fast approaching. Now it's all done and sent off and I can forget about it ... until it's marked.

So what else has the rest of the past week held for me? Not a huge amount, if truth be known. My sleep pattern has gone completely to pot, hence this post in the early hours of the morning. One of my major procrastination activities this week has been making rather a lot of Christmas cards, even though I still have a huge number left over from when I had the business. I'll use some of the old ones, but I always like to make some new ones each year for family and some friends.

Lungs wise, I had a couple of days this week when what struck me was that I could actually breathe without having my attention drawn to it. It was a weird feeling - wonderfully refreshing :o) However, the lung stroppiness has returned to its usual levels. It's not too bad in the scheme of things, but it was lovely to have those couple of days where I felt what I presume to be almost normal in the breathing department. Oh well, such is life I guess.

Right then, seeing as it's 4am, I'm still very much awake and my sleep pattern is completely to pot at the moment I may as well get on and do some more creative things. I'm making various things for various people for Christmas, and still have rather a lot to do so I'll get on with some of that. Maybe if I stay up all night tonight then I'll be so tired by tomorrow night that I'll fall into bed early, sleep through and get up at a sensible time on Monday, rather than the midday to 1am that it has been recently.

Take care all.

Oh, I see ... for now.

Well I have done a little bit of finding out about all the eye 'stuff' so here it is. Basically, in the short-term the thickening of the vitreous humour results in extra floaters (black blobs in my vision), which in themselves are benign, if annoying. However, there is the possibility that this thickening can lead to the vitrous humour pulling on the retina and detaching it, which will be why the optometrist asked if I'd seen a sudden shower of black floaters and flashing lights as this is a symptom of detaching retina. Apparantly it's not common for this to happen, but is a possibility that could occur at any time in the future. I'm going to hope that I don't turn out to be unusual in yet another area of medicine, especially as I already have one fairly rare eye condition - Adies Pupil. I won't go into the complexities of that at the moment though.

That's it for now folks, but I'll be back shortly.

Take care.

Eye eye

One of the potential side-effects of having to take long-term high-dose oral steroids is cataracts. I developed these in both eyes a couple of years ago and now have to have them checked out at the hospital every six months. I've been for my appointment with the hospital optician this afternoon, having just got home, and I don't feel too wonderful about the situation. Now the cataracts aren't too bad at the moment, but I am aware of them and they do interfere with my sight a little. However, they're not yet at the stage of needing to be removed, even though they are slowly getting bigger. Last time I went to the hospital optician I was told that it's unlikely that any opthalmologist would operate on me because of my lungs, even with a local anaesthetic as there's still a risk. As you may be able to appreciate, this was rather upsetting as the prospect of going blind isn't great, especially when it's with something that can, in most people, be rectified relatively easily. Well, I saw a different optometrist today so I thought I'd check out her opinion on this matter, and was again upset by her confirming the unlikelihood of finding an opthalmologist that would be willing to remove my cataracts because of my asthma. She said that it's a matter of weighing up the risks, which is fair enough, but my question is what about over all quality of life? If/when the cataracts get to the stage where I can't drive then this will have serious implications on my mobility as I rely on my car for my independence, perhaps more so than many because of the mobility limitations my asthma imposes upon me. This, of course, is in addition to the life-changing situation of losing one's sight and the resulting isolation I imagine there to be. Oh, and it would mean that I would no longer be able to use my electric wheelchair (which I don't use all the time; only when I can't breathe enough to walk), therefore further reducing my mobility and independence. What of the emotional impact of all of that?

Another thing that the optometrist said was that the vitreous humour (the jelly-like stuff that sits behind the lens) in my eyes is thickening. She wasn't, however, at all forthcoming in what this means in terms of consequences or prognosis, other than it accounts for some of the large, black splodges I see. I'm the kind of person who deals with medical things by finding out as much as possible about them, what the possibilities are (positive and negative), what the diagnosis means, what the prognosis is, finding out how the affected body-part/-system works and then doesn't work, etc. So when I'm given half-information, such as that of the thickening in my vitreous humour, I begin to worry a little about what it means/doesn't mean for me, and when the giver of the news seems reluctant to give me more information I can feel as though things are being kept from me. Now it might be that it means very little and there are few consequences, and that the optometrist simply isn't telling me anything more because there's little to say, but it might be otherwise. I'll be looking things up online and finding out what I can for myself, so I will get back to you with what I learn in case you're interested.

Contemplation

I've always had asthma, having had my first attack when I was 3 months old, but over the years it's got worse. As a teenager I was active and sporty, enjoying swimming and trampolining in particular, and as a young adult progressing quickly through the grades in karate to become an instructor. These days there are times when I can barely make it through from my bedroom to the bathroom (they're next to each other) without getting breathless. This isn't how I imagined my life would turn out.

I remember one day at primary school when I was 10 being set an exercise of writing what we expected to be doing with our lives in 10 years time. I sat for the duration of the lesson staring at the title on the top of the page, unable to write anything, because at that age 10 years was the whole of my life again and an almost inconceivable prospect of time ahead. Others around me wrote of being astronauts or famous actors/actresses, or other such celebrities, but I was thinking realistically and knew that these dreams were most unlikely to come to anything (as far as I'm aware, I was right). I wanted to be realistic in my answer, but the reality was that I didn't have a clue where life would have me by the age of 20, which is why the page stayed blank. I remember being deeply upset that I couldn't complete the exercise or let myself be free enough to write about some pipe-dream that I knew would be fantasy but would at least fill the page. I remember going home and telling my mother about this disaster of the day, and her being troubled that I couldn't imagine my life 10 years from then. It wasn't that I couldn't imagine being alive, it was the sheer time-scale that daunted me, because even then I lived life in pockets of moments, rather than a vast expanse of endlessness. That's not to say that I didn't have dreams and aspirations - I did - but they tended to be set in some almost unreal time ahead of me that I'd happen upon 'when I was older'. As all children do, I thought about the future, about what I'd do when I 'grew up', I dreamt of what job I'd have, whether or not I'd have children of my own, and how life might be. It never occured to me that life would turn out as it has, with me unable to work because of my asthma and spending vast amounts of time in hospital because of it. Looking through my 2007 diary yesterday I counted that I've spent 83 days in hospital this year (so far), which is practically a quarter of the year!

One of the consequences of living a life like this is that it makes it very difficult for those around you to relate to much of your life. My friends are wonderful, accepting me for who I am and the kind of weird life I have, but I'm very aware that this is no ordinary way of life, and many of the experiences I have had are beyond those of many. It could also be said that a more ordinary way of life is alien to me, and whilst I've had glimpses into the world of work and finanacial independence (not dependent on state benefits of one kind or another), they've been brief and are now in the distant past. The more usual way of adult life is almost as strange and unfathomable to me as the life I lead must be to many others. For the most part I tend not to think about these things as it can get a little depressing to always be considering one's differences, but every so often it hits me.

I was at a small party at a friend's house last night, which was an altogether lovely evening, though I found myself contemplative when I got home, because I suddenly felt very different ... I felt boring. This isn't anything to do with how anyone else made me feel, or anything that anyone said. Indeed, nobody said anything other than how lovely it was to see me out of hospital again and back on my feet. But that's the point, I am always in hospital. My experience is illness, hospital, recuperation, illness, hospital, recuperation etc, etc. Although I know that I do talk about many other things, I inevitably also talk a lot about my experiences in life, which happen to be hospital-/illness-/medical-based, and whilst I know it's normal to talk about one's experiences, it's not normal for them to be of this nature. Not only is it not normal, but I think it's also quite challenging for others to be confronted with such experiences - mine and others. Who, after all, wants to think about mortality? Who wants to consider life as a human pin cushion (all those needles in hospital)? Who wants to think about life-threatening illness? Who wants to think about disability? Who wants to think about how different life might be for them if they lived as I do? Don't get me wrong, I'm not sitting here now thinking 'woe is me!' No, I just feel different ... and I feel left behind ... and yes, I feel as though I'm missing out, and I guess I'm slightly shocked that this is how things have turned out to be. On the other hand, as weird as this might sound, life has been like this for so long now that I think I'd have a hard time adjusting to a more normal way of life if my asthma was suddenly cured. It would be amazing and exciting and wonderful, but I think I'd hardly know how to live, because 'normal life' has been beyond the realms of my experience for many, many years.

What a 'nana

There has been rather a long time between postings, so apologies for that, though it has been unavoidable.

As an asthmatic, Guy Fawkes Night is always something of a hazard with the fireworks and bonfire smoke-filled air, but I try not to let it rule my life and go out to events with caution. This year (on 5th November) a friend was having a small gathering at her house in Gateshead – just across the river from Newcastle where I live – where we were to meet, then head up to the local park to watch the fireworks display, before going back to Caroline’s for homemade soup and rice pudding. I survived the walk to the park, the fireworks, the bonfire smoke-filled air and the walk back. I survived the soup that Caroline and Andy had made especially for me, catering for my stupidly long list of severe allergies. I was slain by a sip of Sainsbury’s Tropical Fruit Juice. I can’t have juice made from concentrate, and I was so excited by the fact that all four of the juices Caroline had were 100% not from concentrate, that I forgot to concentrate myself and didn’t look to check the ingredients. I wasn’t expecting a fruit juice to have banana in it so was dismayed when I tasted its distinctive flavour in the small sip of the drink I had. I immediately loaded myself up with double doses of two antihistamines, but the tingling lips and fizzy tongue had already started. I took myself off to the bathroom where I was promptly sick, and I could feel my mouth and throat begin to swell. One of my friends, Katherine, came in to see how I was, bringing my EpiPens with her and I quickly stabbed myself with the first. Too late though and I knew that I had to get to hospital, but I also needed just to get away from the rest of the group, because it’s really no fun being watched in horror and fear as you get increasingly unwell. Katherine and Georgina took me down to my car and we set off for the hospital (G drove, not me!). This would’ve been a better plan if any of us had known where the hospital in Gateshead is, but we didn’t and I was getting worse, with my breathing becoming more laboured by the minute. G decided to pull over at a T-junction where there were two clear road signs, K called for the ambulance, and I stabbed myself with my second EpiPen. I have to say that I was very impressed with the speed of the paramedics and we only had to wait about 5 minutes, if that, before they arrived. They were then very good with me, taking full note of all my allergies and medication and treatment protocol, all of which I keep with me on laminated cards so that I don’t have to try to explain it all when I can’t breathe. After several attempts at getting a cannula (needle) in, but failing in part because I was shutting down and in part because my veins are so scarred from over-use, they gave up and whisked me off to the QE hospital in Gateshead. Thankfully, unlike us, they knew where they were going.

The A&E staff were ready and waiting for me in resus with their anaphylaxis kit out and nebulisers at the ready, though I’d already had two more shots of adrenaline and nebs in the ambulance. Unfortunately my breathing was still going downhill and my tongue and throat were still swelling so I was very quickly seen by the intensive care team. Again I was impressed by how attentive all in A&E were to my treatment protocol etc, and how much they asked me what helps in these situations, thereby recognising that I live with this all the time and have a lot of experience of managing it (not all medics/hospitals/places I’ve landed have been like this and it is a very frightening experience). It took the medics in A&E a long while to get any venous access too, but they did eventually succeed and were able to give me the IV steroids I needed and the aminophylline drip that usually helps my lungs. The swelling of my mouth and throat eventually began to subside, but the anaphylaxis had set off my asthma in big style and this wasn’t abating to any degree so I was taken up to intensive care. They explained that they didn’t want to ventilate me if they could avoid it, but that they may have to if things didn’t improve or if I became very tired, which is good because I’ve been ventilated five times and hate it ... understandably. However, things didn’t pick up and I was becoming exhausted so one of the docs got all the intubation kit out and drew up all the drugs to put me to sleep, whilst another one tried to get a second cannula in me so that they had enough venous access to get the drugs into me. He had about 20 goes all together but couldn’t, however hard he tried, get one in. They abandoned ventilation and instead looked at each other, looked at me, and looked scared. This is never good. I knew that all I could do was to battle on with what little energy I had left and concentrate on getting every breath in and then out as best as I could. I was scared. I was beyond exhaustion. I was desperate to give up, but I knew that if I did then I would die. Eventually, somehow, I came through the worst of it, though not without the medics trying again to get another cannula in to put me to sleep for venting. I could’ve cried. It had all started around 9:15pm and it didn’t begin to settle until lunch time the following day. It is like running at full speed up a mountain, whilst breathing through a straw filled with foam, and unable to stop at any point for a rest or replenishing of energy reserves.

I stayed in ITU at the QE until Friday 9th November when I was transferred to my usual ward at my usual hospital (Ward 29 at Freeman Hospital, Newcastle). All at the QE had been great and treated me very well, but it is always a relief to be back where they know me and I don’t have to do any explaining, and they know how quickly things can go spectacularly wrong with me. Indeed, in the early hours of Saturday – 5:30am – it all went horribly pear-shaped again and I was back to square one with the asthma. The Freeman’s ITU team came up to see me, and they wanted to take me downstairs to be with them, but there were no ITU or HDU beds at all so they got the outreach team to HDU me up on the ward, which was a new experience for all involved. Again it was another long hard battle, with the Carbon Dioxide levels in my blood (pCO2) going stupidly high, which is a bad sign, and I wondered if I was going to end up being vented, but at last, at around 1:30am on Sunday it broke and settled. Aching from the effort of trying to breathe, utterly worn out by the huge set-back on top of the exhaustion from the anaphylaxis/asthma attack earlier in the week, I collapsed into sleep. I do Olympic sleeping after bad attacks (I call it The Big Sleep stage), and this time slept from the early hours of Sunday until Tuesday evening. Even after The Big Sleep it takes more time to recover more fully and for my oxygen levels to pick up, and it’s usually not until after The Big Sleep that they try to start weaning down the aminophylline as I have frequently gone splat during the weaning process in the past. Come Thursday afternoon though the aminophylline was successfully down, and by Sunday we’d managed to get me off the supplemental oxygen all together. It’s Monday evening now and I’ve just got home. How lovely it is to be back in the land of the living.

Requiem aeternam

I have some friends whose youngest son is now head chorister at Durham Cathedral, and last night I went with them to hear him/the choir sing Faure's Requiem in a communion service for All Souls Day. It was lovely, and amazing as the choir had only been practicing for a week. It was lovely to have the requiem as part of the service, rather than just as a concert as is most usual these days, and it was a great opportunity to think about those people we've known and loved, but have died. There was an opportunity also to light a candle in memory of those who have died so I lit one for my friend Laura who killed herself in July.

Laura was a truly lovely person, highly intelligent and incredibly gifted musically. She had so much going for her, but was sadly unable to see the good in herself and had suffered from terrible depression for many years. She was someone who would go out on a limb for a friend - she would do anything she could for anyone - but tragically was unable to see that she too was worthy (and more worthy than many in the world) of all the love, support, help and good things that came her way ... although she was continually let down by the mental health services, which did nothing for her confidence or feelings of self-worth. Laura is greatly missed by many, and I don't think she would have believed you if you'd told her before she died about how many people would attend her funeral and memorial service; about how the Laura-shaped hole that's been left in the world is gaping and cannot be filled by anyone or anything else; or about how many tears have been shed by so many people all over the world for the loss of such a wonderful and amazing young woman.

I hope and pray that Laura is finally at peace. I prayed with all my heart for her in the cathedral yesterday evening, and although some (non-christians) may say it was in my imagination or is wishful thinking, I felt as though Laura had at last found her peace and was at rest. If only she could have found that peace here on Earth ...

Rest peacefully Laura.

Meal out

I have actually done a bit of study today, and have even made a (tiny) start on the play writing course material, although most of my time has been spent experimenting with Photoshop Elements for the photography course. I have a way to go until I'm caught up on all that I should be, but I am making a bit of progress now, thanks to my dawn trip to the coast the other day.

The highlight of today has been going out for a meal with friends at the Italian restaurant half way down my street, Peppy's. It is, in fact, the only restaurant in Newcastle where I can eat out, because of the stupid number of random things that I'm allergic to, but they're ever so lovely at Peppy's and haven't managed to poison me yet. Before the allergies really took hold I used to go to Peppy's relatively frequently so I'd built up a rapport with Vincent (the owner) and the rest of the staff already. After the dramatic increase in my allergies (and the immunologist's eventual success in working them all out) I stopped going out for meals, so when I bumped into Vincent on the local shopping street one day after this and he asked why he hadn't seen me at the restaurant for a while I told him about all my allergies. He said he was sure they could cope and we got into a lengthy discussion about all the things I can and can't have, and how carefully things have to be prepared. I don't think he really grasped the extent of the problem, but he was willing to try catering for me, and as I was missing the sociability of eating out with friends I was willing to give it a chance too. Apparantly I'm not their only customer with severe allergies and they do seem to be quite allergy-aware, without being so paranoid as to think that if anything did happen to go wrong that I'd sue them or hold them responsible and therefore be unwilling to let me through the doors. Quite on the contrary. Take this evening for example; I phoned up last night to make a booking for my friends and I, and then took the flour along at lunch time for them to make pizza dough for me for this evening (yes, they are quite happy to make special pizza dough for me!). When I arrived at the restaurant this evening one of the waiters (Vincent's son), who was around at lunch time when I took the flour in, said he just wanted to check what the flour was. when I told him it's just wholemeal (I'm allergic to the sulphur dioxide used to bleach flour to make it white) he said he thought it was, but he wanted to check because when the chef was making my dough earlier in the day he'd made it too sloppy so they'd gone out and bought some more flour for me. That is beyond the call of duty, don't you think? So then I had a lovely meal, poison-free, utterly delicious and having been cooked for me in a restaurant. I was just finishing my meal when one of the waiters came in with a large plate of freshly baked bread that the chef had made for me out of the rest of the flour they'd bought and that I was given to take home. That is so lovely of him and definitely fantastic service, wouldn't you agree? You so often hear the negative experiences people have, and so often people do seem to be out to get what they can from these, but personally I prefer to commend those who do a good job, those who do that extra bit for someone, those who remind us that people are essentially good, and to put negative experiences down to bad luck, provided they haven't been caused by clear negligence etc. Bad things happen, but then so do good things and these are the things that should be celebrated.

I'm going off on a tangent now so I'll wind up. It's bed time anyway.

Night all.

Sleepless night

I don't feel so grand today. My lungs were rather grumpy last night so I didn't get any sleep. In the scheme of things I wasn't too bad in that I wasn't desperately short of breath, but I couldn't stop coughing and was wheezy enough to keep myself awake with the noise. I'm scarily good (if 'good' is the right word) these days at sleeping through a very tight chest, but usually if it comes on whilst I'm actually asleep. Getting to sleep when you can't breathe to begin with is a whole different matter, especially when the old lungs are making so much noise that they wake you up at the slightest hint of nodding off. Needless to say I'm tired today. Most annoyingly, and as is often the way with these things, things picked up as the dawn approached, but by this time I was too mentally stimulated to sleep so I got up around 6:30am and went for a drive to the coast. St. Mary's Lighthouse is always beautiful, and to get there just as the sun was breaking through the morning cloud, giving a warm, golden hue to the sun and the sea was gorgeous. Unfortunately I was a little late with my camera to catch the sunrise on digital film as the best of it had past during my drive, but it was still lovely. Given that I wasn't feeling that great and was tired, I didn't go for much of a wander, but I did take a few photos of the sea. In the OU course that I'm trying to catch up on I've (supposedly) been learning about exposure and the different elements that can be adjusted to get correct exposure in different lighting conditions or to gain different effects. This morning I had a little play with ISO settings, though largely experimented with shutter speed. I haven't had a chance yet to see what the results were, but I'm not expecting anything great as I really was experimenting. I'll have a look in a bit and see what I got.

Since getting back home around 9:30am (it took ages to get back because of the work/school traffic) I've had a little nap, which has taken the edge of the tiredness. My friend JW came round for a bit this afternoon, and it was nice to have a bit of company, but I'm exhausted now and fit only for sofa surfing. I'm sincerely hoping that my lungs let me sleep tonight.

On the paragliding front, I'm still waiting to hear back from AirVentures to see if they can help me.

Uneventful days

It's been a very uneventful couple of days, which is rather nice in its way as life can be too eventful sometimes.

I had news today that my cousin has had another baby, born by c-section two weeks ago. This is their fifth child, but number four only lived eleven hours, which was heart-breaking, so I'm sure this latest addition to the family will be so very loved. It's wonderful to hear that both Mum and baby are doing well and that all are happy :o) I also heard today that one of my friends is pregnant or, as she put it, 'busy making a human being that'll be ready next May.' So today's been a day of baby news, and very lovely baby news too :o)

This evening I've sent an email to Air Ventures, which is a paragliding and hang gliding company in the Lake District. I've asked them for info and to find out if they can help me with my 'crazy idea', though that's not how I phrased it to them, because I can't imagine they think it's crazy at all ;o) Anyway, I'll have to wait to hear back from them, but I'm hoping that they'll be helpful, let me fly with them and take me on, though I can understand that there may be some reluctance to take me paragliding given my lungs' rubbish breathing abilities. I really hope they'll take me up ...

Crazy idea

During my latest admission, in an hypoxic state, I came up with a crazy idea. I often have crazy ideas when I'm oxygen deprived and they're usually dismissed fairly rapidly once I get enough O2 in my system again, but I have to say that I was rather taken with this most recent idea. I was thinking about my list of things I want to do, and most specifically about how I might raise some money for the ward as some kind of payback for the amazing care they give me and the number of times they've saved my life. I have decided that I would like to do a sponsored paraglide! I have to think carefully about how on earth I'm going to get up the hill/mountain/cliff in order to jump off it with that little bit of material attached to my back, but I'm hoping that some nice paragliding organisation/school will be able to help me with those kinds of logistics. I know from past adventurous ideas that I can't do a parachute jump because of lack of oxygen so high up and rapid changed of atmospheric pressure, so I had to check out with my consultant that a paraglide would be okay. Now I'm not supposing that he's much of a paragliding man himself (lol at the thought!), but I thought he might have an opinion. He did ... many ;oP but couldn't think of any 'clinical' reason why I shouldn't paraglide. Yay! So that is my crazy plan, which is terrifying my mother ;oP and I've today started investigating how I'm going to do this. How exciting!

A First Entry

This is my first entry, which is obvious as this is the first post on the blog - duh! Anyway, I thought I'd get started after the idea of beginning a blog came to me during my latest hospital admission.

I got home yesterday evening after an eleven day stay at my usual hospital, where I have direct access to the respiratory ward. It's a weird life going in and out of hospital all the time (every few weeks really), and keeps one oddly dependent on others for the most basic of things. I resent it sometime, although I always fully appreciate all that the medics and nursing staff do for me ... it's more the need to be reliant on them that can get to me, rather than anything else, but I've come to realise that there's no point in dwelling on the negativity of the situation, because that only makes the whole thing so much more miserable. It's much better to allow the gloomy times to have their time when they come, but to get on making the most of life the rest of the time. This has been no easy learning curve for me, and in my time I have suffered from the most debilitating depression, at times requiring admission into mental health units, but these days I'm lucky enough to have broken free of the jaws of that particular beast.

So anyway, as I said before, I'm fresh out of the resp ward of my local hospital where I am a regular. It's great to be back home, but I've had to take things easy today because my lungs have been feeling a little grumpy, despite their recent reminder on what they're supposed to do. I've been lying on the sofa most of the day (sofa surfing, so i call it), which is really rather dull, but better sofa surfing than hospital bed surfing :o) The cat, Zach, has pinned me down and refused to let me out of his sight. He puts up with a lot with me disappearing on and off for a week or more at a time, so it's little wonder he's ... emotionally challenged. It's lovely to have his company though, and lovely to feel unconditionally loved, even if it is by the cat >^..^<

This has been a bit of a ramble, and rather disjointed, but hopefully subsequent posts will be more coherent. I'll sign off for now though, have a play with the rest of the site, and then head to bed.