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.
Friday 30 November 2007
Saturday 24 November 2007
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.
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.
Monday 19 November 2007
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.
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.
Saturday 3 November 2007
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.
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.
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