This comes to you just minutes too late for Christmas day, but I hope you all had a very happy Christmas, and that you enjoy the rest of the festive season too. I'm up in Edinburgh again, staying with Mum and J. We've had a gentle day with lots of food, lots of presents, lots of telly, lots of turkey (my first turkey for 20 years!), a brief walk/trundle this evening, and a smidgen of alcohol. Actually, the only alcohol I've had has been in the pudding that mum made, and which contained rather a lot of delicious Bailey's - mmmmmmm. It's been a lovely day, and I feel very blessed to have had the Christmas I have.
I am aware that I need to do a proper update very soon, and that (yet again) it is far too long since I last posted, but rather a lot has been going on, and I've been exhausted. One of the lovely things about coming up to stay with Mum and J is that I've been able to rest and get some much-needed sleep. I'm away from all the stress and difficulties at home, and for a week or so I am free of hospital appointments. Having said that, there's some question as to whether or not I may need to venture up to the Edinburgh Royal Infirmary at some point as I seem to have hurt my foot by running over it in my wheelchair. I think I am possibly the only person who could mow themselves down in their own wheelchair whilst sitting in it, but I did.
I went to the local church last night for the Christmas Eve midnight service, at 11.30 ... Mum had been going to go with me, but in the end she was too tired so I went on my own. It's a beautiful little church and I was made to feel very welcome. The service was lovely, the address was short (which is what you want at a late night service, in my opinion), the carols were great, the organ/organist was stunningly fantastic. I trundled back to the house in the freezing temperatures feeling warm on the inside. I got to the front door with the ramp still resting in its place on the top step, but I thought that the door had perhaps knocked it forwards a little. To make sure that it was going to be safe for me to go up, and to ensure there were no accidents (little did I know!), I thought it would be wise to push the ramp just a little further on to the step. I took my feet off the footplates and put them on the ground behind so that I could more easily reach the bottom of the ramp and I bent forwards. As I bent forwards my coat caught the joystick control of my wheelchair, thus sending it shooting forwards. My feet, being on firm ground, stayed where they were, and the forward-moving chair propelled the rest of me straight ahead, and then straight down as my bum left the chair. My coat eventually disentangled itself from the joystick control and the chair came to a halt, but by that time I was sprawled flat on my tummy, head-first up the ramp with the wheelchair on top of me. I lay there for a moment thinking, 'Ow!' and then imagined myself spending the night outside in that position, knowing that Mum and J would have gone to bed.
Staying like that wasn't really ever an option, partly because it was so cold, and partly because bits of me were in rather odd and painful positions, not least my feet that were basically folded in half at the base of my toes, and weirdly angled in the middle. I somehow got half way on to my knees, lifted my bum in the air, and twizzled my right arm behind me so that I could feel the joystick, which I then managed to knock backwards a little. The wheelchair clunked as it fell off the backs of my legs, and I was able to get more fully on to my knees, although the bottom of my legs and feet were still underneath the chair, and kind of trapped by the footplates. But once I got on to my knees I could twist round to see what I was doing with the joystick controls and was able to manoeuvre the chair backwards. At last I got my feet out, sore as they were, and was able to scramble back in to the chair. A good look around told me that, thanks to the long garden path and the fact that it was 12.30 am, nobody had witnessed my late night sprawl and clatter on the ramp, but a glance at the ramp also told me that it had indeed slipped a little way off the front door step. I then did what I ought to have done in the first place: I turned off the power on the chair before leaning forward and pushing the ramp back in to position. Only when I was safely sitting upright again did I turn the power on again, trundle up the ramp and go inside the house.
I'd only had one Bailey's and that had been several hours previously before dinner. I can tell you don't believe me, but it's true!
So yes, I have a sore foot, which may need looking at, but I'm hoping it'll sort itself out in the next day or two.
Anyway, happy Christmas, everyone!
Wednesday, 26 December 2012
Wednesday, 5 December 2012
Something else
There has been another long gap between posts, for which I apologise, but it's been for good reason. I've been putting off writing this post - the post I promised you would be next. I'm having a tough time and I've needed a bit of space.
Back in at the beginning of the summer I started to get pain and stiffness in my hands, in all the small joints of my fingers. It quickly spread to both of each of my knees, my elbows, my shoulders, my hips, my feet, and my wrists. Every morning I wake up and dread moving because I know it's going to be painful. I went to my GP and was referred to a rheumatologist with the suspected diagnosis of rheumatoid arthritis. I have to admit that I was anxious. Rheumatoid arthritis is a horrible disease that attacks the joints, but after reading about it, I was bracing myself for a confirmation of my GP's suspicions.
The appointment with the rheumatologist was on the penultimate day of my last admission for my asthma. Luckily it was in the same hospital that I was an in-patient so I was still able to attend.
I was in with the rheumatologist for about three quarters of an hour. He took a full history and family history; he noted symptoms; and he did a physical examination. He then said that he's about 99% sure I don't have rheumatoid arthritis, but that I do have fibromyalgia, although he's taken x-rays and bloods to be certain, and to check a few other things that can cause similar pain.
I had heard of fibromyalgia before, and know several who have it, but I didn't really know much about it, except what I was experiencing myself. Although I was obviously relieved that I don't have RA, because I was almost geared up to hear that I did have it, it came as more of a shock really to be told that I have FMS instead. It's scared me. I know it's not a degenerative disease, so I ought to be thankful, but it is a chronic problem, and it is a painful condition. It is a condition that, for many years, was dismissed as psychosomatic, and because of that I have felt some stigma attached to it. More recent research has shown that it's actually a Central Nervous System (CNS) disorder, and the rheumatologist described it as a sleep disorder. It's very complicated, and it's been difficult to get consistent, reliable information about it.
The rheumatologist said that for one reason or another people with fibromyalgia have difficulty with sleeping. Many have insomnia, but more than this, it has been shown that those with FMS don't go in to stage four sleep - the deepest part of sleep; the part of sleep that is responsible for repair and restoration. As a result of not entering this fourth stage of sleep, the body has a pain response, which itself then leads to more disrupted sleep. However, the answer doesn't seem to be as simple as getting more sleep, and sleeping tablets don't help. In fact, not a lot seems to help, including many pain killers. The pain that those with FMS feel is a nerve pain - neuropathic pain - so, it seems, is best treated with neuropathic pain killers, which are most usually used as anti-epileptic drugs (though epilepsy and FMS are not at all the same thing or related). I have been started on pregabalin, although it's a medication that needs to be increased slowly, so I'm only on a very low dose at the moment. It will gradually be increased.
I was told that the pregabalin may not be enough, and that I may need a referral to the Pain Clinic at the other big hospital in the city, where they have access to other meds, and other forms of pain relief such as TENS, although I don't know how effective TENS is in FMS. I'm not at the stage of getting a referral to the pain clinic yet, though.
I've found it hard getting this diagnosis, and one of the things I've found hard is that many of those with FMS say that getting their diagnosis was a relief. I didn't feel this way. I felt ... I don't know ... almost physically winded. I felt shocked, because it wasn't what I was expecting or had geared myself up for. I've since felt isolated because I haven't felt the relief that others have spoken of. But the difference is that, for many, probably most, the road to a diagnosis of FMS is very long with many tests and many referrals for investigations. I haven't. I'm pleased I haven't, but as I say, this difference has made me feel alone. And I feel alone because FMS is a diagnosis that most people don't seem to know about, or they know the old thinking of it being psychosomatic. It isn't understood well even in the medical profession, and I am afraid. I'm afraid that many medics will have the same out-dated perception of FMS as a psychosomatic illness, and that when my FMS diagnosis comes to light while I'm being treated for my asthma, then the asthma too will be dismissed and I will be under treated. Perhaps that doesn't seem like a fair assessment of how things might be, but I base this on past experience, not of FMS, of course, but of self harm. My scars are very old, but they're still very visible, and sometimes those scars have made some medics discount my asthma. I have been under treated as a result. I have almost died as a result of that under treatment.
It is very dangerous for a medic to presume that because someone has had mental health problems in the past that the same person can't possibly have anything physically wrong with them. It is very dangerous, but it does happen, and when it happens it can have disastrous consequences. Because it has happened to me before with the scars from old self-harm, it terrifies me that the same will happen with current fibromyalgia, with old attitudes towards it, and my very real, very physical asthma. I am at the mercy of medics and their understandings, and when I'm in the middle of an asthma crisis I have no voice because I have no breath to speak. It is amazing, in a terrifying way, that even when I am like that, and medical findings in blood tests and x-rays confirm the asthma crisis, they can all still be ignored and disregarded if the medic has a negative mentality towards mental health issues, or physical conditions once considered psychosomatic.
So no, I am not relieved, and yes, I am scared. I am very scared, and I feel very alone.
Back in at the beginning of the summer I started to get pain and stiffness in my hands, in all the small joints of my fingers. It quickly spread to both of each of my knees, my elbows, my shoulders, my hips, my feet, and my wrists. Every morning I wake up and dread moving because I know it's going to be painful. I went to my GP and was referred to a rheumatologist with the suspected diagnosis of rheumatoid arthritis. I have to admit that I was anxious. Rheumatoid arthritis is a horrible disease that attacks the joints, but after reading about it, I was bracing myself for a confirmation of my GP's suspicions.
The appointment with the rheumatologist was on the penultimate day of my last admission for my asthma. Luckily it was in the same hospital that I was an in-patient so I was still able to attend.
I was in with the rheumatologist for about three quarters of an hour. He took a full history and family history; he noted symptoms; and he did a physical examination. He then said that he's about 99% sure I don't have rheumatoid arthritis, but that I do have fibromyalgia, although he's taken x-rays and bloods to be certain, and to check a few other things that can cause similar pain.
I had heard of fibromyalgia before, and know several who have it, but I didn't really know much about it, except what I was experiencing myself. Although I was obviously relieved that I don't have RA, because I was almost geared up to hear that I did have it, it came as more of a shock really to be told that I have FMS instead. It's scared me. I know it's not a degenerative disease, so I ought to be thankful, but it is a chronic problem, and it is a painful condition. It is a condition that, for many years, was dismissed as psychosomatic, and because of that I have felt some stigma attached to it. More recent research has shown that it's actually a Central Nervous System (CNS) disorder, and the rheumatologist described it as a sleep disorder. It's very complicated, and it's been difficult to get consistent, reliable information about it.
The rheumatologist said that for one reason or another people with fibromyalgia have difficulty with sleeping. Many have insomnia, but more than this, it has been shown that those with FMS don't go in to stage four sleep - the deepest part of sleep; the part of sleep that is responsible for repair and restoration. As a result of not entering this fourth stage of sleep, the body has a pain response, which itself then leads to more disrupted sleep. However, the answer doesn't seem to be as simple as getting more sleep, and sleeping tablets don't help. In fact, not a lot seems to help, including many pain killers. The pain that those with FMS feel is a nerve pain - neuropathic pain - so, it seems, is best treated with neuropathic pain killers, which are most usually used as anti-epileptic drugs (though epilepsy and FMS are not at all the same thing or related). I have been started on pregabalin, although it's a medication that needs to be increased slowly, so I'm only on a very low dose at the moment. It will gradually be increased.
I was told that the pregabalin may not be enough, and that I may need a referral to the Pain Clinic at the other big hospital in the city, where they have access to other meds, and other forms of pain relief such as TENS, although I don't know how effective TENS is in FMS. I'm not at the stage of getting a referral to the pain clinic yet, though.
I've found it hard getting this diagnosis, and one of the things I've found hard is that many of those with FMS say that getting their diagnosis was a relief. I didn't feel this way. I felt ... I don't know ... almost physically winded. I felt shocked, because it wasn't what I was expecting or had geared myself up for. I've since felt isolated because I haven't felt the relief that others have spoken of. But the difference is that, for many, probably most, the road to a diagnosis of FMS is very long with many tests and many referrals for investigations. I haven't. I'm pleased I haven't, but as I say, this difference has made me feel alone. And I feel alone because FMS is a diagnosis that most people don't seem to know about, or they know the old thinking of it being psychosomatic. It isn't understood well even in the medical profession, and I am afraid. I'm afraid that many medics will have the same out-dated perception of FMS as a psychosomatic illness, and that when my FMS diagnosis comes to light while I'm being treated for my asthma, then the asthma too will be dismissed and I will be under treated. Perhaps that doesn't seem like a fair assessment of how things might be, but I base this on past experience, not of FMS, of course, but of self harm. My scars are very old, but they're still very visible, and sometimes those scars have made some medics discount my asthma. I have been under treated as a result. I have almost died as a result of that under treatment.
It is very dangerous for a medic to presume that because someone has had mental health problems in the past that the same person can't possibly have anything physically wrong with them. It is very dangerous, but it does happen, and when it happens it can have disastrous consequences. Because it has happened to me before with the scars from old self-harm, it terrifies me that the same will happen with current fibromyalgia, with old attitudes towards it, and my very real, very physical asthma. I am at the mercy of medics and their understandings, and when I'm in the middle of an asthma crisis I have no voice because I have no breath to speak. It is amazing, in a terrifying way, that even when I am like that, and medical findings in blood tests and x-rays confirm the asthma crisis, they can all still be ignored and disregarded if the medic has a negative mentality towards mental health issues, or physical conditions once considered psychosomatic.
So no, I am not relieved, and yes, I am scared. I am very scared, and I feel very alone.
Thursday, 22 November 2012
What happened next?
I'm guessing that's the question you're asking after my last post, and my rather hasty exit. Sorry about that. I was taken rather by surprise if I'm honest. Perhaps I should have been expecting to be going in to hospital, but I really wasn't. I thought that I ought to take my GP's advice and phone my consultant for a plan of action, though I hadn't really thought through that the advice would be 'Go to hospital. Go directly to hospital. Do not pass go, and do not collect £200' ... not that I've ever collected £200 on my way to hospital ... although it is the kind of thing I would consider doing in an hypoxic brain muddle, isn't it?
Anyway, what happened is that I came to the ward in a more relaxed way to most previous admissions, ie, not in a life-threatening state, which was good, but also rather strange and I felt like something of a fraud. However, when the Registrar came to see me she looked rather horrified when I said that my daytime peak flow (PEF) was averaging at around 150. In fact, the look on her face made me think that perhaps I shouldn't admit that my night time peak flow was more like 90, so I kept that quiet, which really should have been enough to make me realise that I was far from fraudulent... Then she listened to my lungs. Again, afterwards she looked at me somewhat aghast and said, 'They sound very, very tight.' The did feel tight, but as it had been creeping up on me for so long I'd been getting used to it so I didn't feel as tight as perhaps I would have done if my lungs had suddenly clamped down like that. It's a known phenomenon of brittle asthmatics, and a rather dangerous one too, that sadly increases our risk of mortality. Thankfully, this time I didn't die and I didn't slip in to crisis.
The main plan of attack (no pun intended) was an infusion of aminophylline to try to get things a bit steadier. Aminophylline is my wonder drug, but it doesn't kick in straight away, which is often a worrying thing when I'm in crisis as time is something of which I don't necessarily have the luxury. This time it wasn't so much of an issue, except that I was generally exhausted and was desperate for a good night's sleep. The first night here wasn't to be a good night and I had the same difficulties as I'd been having at home, although perhaps not to quite the same extent. The second and third nights were slightly improved on the first, though still not great, but the fourth was easier, after which the aminophylline infusion rate was reduced.
I always get nervous at the time of aminophylline weaning because there have been so many times in the past when I've gone right back to square one after aminophylline reduction. Of course, at these times I'm only just beginning to regain a smidgen of strength after the exhausting fight for life I've had, so then thought of having to begin that fight all over again is both utterly draining and terrifying. I was still a little anxious about it this time, but not as much since things hadn't been so awful at the outset.
The infusion came down completely this morning and I've been okay. Because of the scenario above, there's no way I could go home on the same day as coming off the infusion, but seeing as I've been okay today back on the oral preparation of the drug I should be able to go home tomorrow. Excellent news!
It's been an odd admission for me, partly because I wasn't in such a crisis when I came in. This is good, but it's very unusual. Because I wasn't in a life-threatening state on admission I didn't have to be in a room right next to the nurses' station where they could keep an eye on me, so I've spent the past week in the last cubicle in the bit of corridor around the corner at the end of the ward. I've never liked being round here. It's lonely. It's right of the way and you never actually see anybody unless they come specifically to see you. Nobody passes the room on their way to anywhere else, and most of the time you barely know who's working on the ward except for the nurses immediately looking after you. It's not that I want to be in the middle of everything - I don't - it's that I do get very lonely having to spend a week almost entirely on my own, and because I have this long-standing MRSA positive status I'm not allowed out of the room.
The trouble with getting lonely is that it makes me think, and I usually end up getting in to a negative frame of mind and thinking about all the difficult things that are going on. Sometimes that's just the immediate situation and the recent asthma crisis, but when there are other things outside of that going on then they often pile in too. Then I get in to a bit of a state - miserable, tearful, depressed even. Unfortunately this is what happened on Sunday as there have been rather a lot of other things going on in recent times. Some of things I'm not really at liberty to talk about here, but one that I will mention is that I've generally been a bit low, which you may well have picked up on in my post 'Identity'. I've actually started seeing a clinical psychologist in the last few weeks. This will only be for a short period as these days the NHS only offer between six to ten sessions as, sadly, there's an increasing demand for the service, but I've found the three I've had so far helpful, if difficult. Actually, when I went to see my GP last week, the original purpose for the appointment was to ask if I could temporarily increase my antidepressant. It's not that I'm really depressed, it's just that I felt like I was beginning to walk a tight-rope and I wanted to stop before I fell. It was only as a passing, exhausted, thought that I asked about the asthma, which led me to be admitted. So yes, things have been tricky recently and the isolation in here caused a bit of a meltdown on Sunday. I was completely miserable, and then totally lost all composure when the nurse came in to tell me that from Monday I wouldn't be able to use the toilet (I would have to use the commode instead) because of my MRSA positive status and the toilet is communal. Most of the other cubicles round here are only used through the week, either for sleep studies or for transplant assessment, so it had been okay to use the communal toilet during the weekend, but when Monday came it would be different. It was the last straw for me on Sunday and I broke down. I'm so lucky to have the care of such wonderful staff here though, and to have known them for so many years, because their response wasn't one of bewilderment, but one of gentle concern, an opportunity to talk for a bit about all the things going on for me, and a big hug. As it turned out, the lovely nurse who had given me the news on Sunday felt so guilty for making me upset that on Monday she said that they'd swung it so that I could use the toilet and the other, more mobile (and transient) patients could use other toilets.
To someone on the outside it must seem like such a trivial thing - the use of a toilet - but believe me, commodes are demoralising, even when you're in a room of your own. It is a big deal to be able to use a normal loo. It is a big deal not to have to lie in bed and wait for someone to bring you a chair with a bedpan in the bottom, which may not arrive in time if you're suddenly desperate. Sometimes the logistics of using a commode aren't easy if you have a sudden release from constipation (I'll let your imagination do the work), or what, if has happened to me before, there's a hole in the bottom of the bedpan that's in the commode? No, it really is a horrible thing to have to use a commode and it really makes a big difference if you can use a proper toilet.
So Sunday was emotionally horrible, but Monday improved with a visit from my mum. She came down from Edinburgh for two hours to see me and she didn't tell me she was coming until she was sitting on the train. How lovely is that? It was fab to see her, and wonderful to have a Mum-hug. I had another visitor that day too, my friend O. She had been coming down to Newcastle anyway (again, from Edinburgh) because we had been meant to go to a concert together in the evening. O still went to the concert, I'm pleased to say, but she also came to the hospital to visit me. By the time she left to make her way straight to the concert venue I was feeling very much chirpier despite missing the gig.
I've moment of being low since then, but due to something very specific that I'll write about in another post very soon, but I've otherwise managed to remain fairly positive since Monday. I'm confident that tomorrow will be a positive day too since the thing that I'll write about in my next post has been dealt with (in as much as it can at this stage) and I'll be heading home. This might be crazy, but regardless of how tired I am when I get home tomorrow, in the evening I'll be heading to Flotsam for a quick burst of normality at the end of a stressful seven days.
Anyway, what happened is that I came to the ward in a more relaxed way to most previous admissions, ie, not in a life-threatening state, which was good, but also rather strange and I felt like something of a fraud. However, when the Registrar came to see me she looked rather horrified when I said that my daytime peak flow (PEF) was averaging at around 150. In fact, the look on her face made me think that perhaps I shouldn't admit that my night time peak flow was more like 90, so I kept that quiet, which really should have been enough to make me realise that I was far from fraudulent... Then she listened to my lungs. Again, afterwards she looked at me somewhat aghast and said, 'They sound very, very tight.' The did feel tight, but as it had been creeping up on me for so long I'd been getting used to it so I didn't feel as tight as perhaps I would have done if my lungs had suddenly clamped down like that. It's a known phenomenon of brittle asthmatics, and a rather dangerous one too, that sadly increases our risk of mortality. Thankfully, this time I didn't die and I didn't slip in to crisis.
The main plan of attack (no pun intended) was an infusion of aminophylline to try to get things a bit steadier. Aminophylline is my wonder drug, but it doesn't kick in straight away, which is often a worrying thing when I'm in crisis as time is something of which I don't necessarily have the luxury. This time it wasn't so much of an issue, except that I was generally exhausted and was desperate for a good night's sleep. The first night here wasn't to be a good night and I had the same difficulties as I'd been having at home, although perhaps not to quite the same extent. The second and third nights were slightly improved on the first, though still not great, but the fourth was easier, after which the aminophylline infusion rate was reduced.
I always get nervous at the time of aminophylline weaning because there have been so many times in the past when I've gone right back to square one after aminophylline reduction. Of course, at these times I'm only just beginning to regain a smidgen of strength after the exhausting fight for life I've had, so then thought of having to begin that fight all over again is both utterly draining and terrifying. I was still a little anxious about it this time, but not as much since things hadn't been so awful at the outset.
The infusion came down completely this morning and I've been okay. Because of the scenario above, there's no way I could go home on the same day as coming off the infusion, but seeing as I've been okay today back on the oral preparation of the drug I should be able to go home tomorrow. Excellent news!
It's been an odd admission for me, partly because I wasn't in such a crisis when I came in. This is good, but it's very unusual. Because I wasn't in a life-threatening state on admission I didn't have to be in a room right next to the nurses' station where they could keep an eye on me, so I've spent the past week in the last cubicle in the bit of corridor around the corner at the end of the ward. I've never liked being round here. It's lonely. It's right of the way and you never actually see anybody unless they come specifically to see you. Nobody passes the room on their way to anywhere else, and most of the time you barely know who's working on the ward except for the nurses immediately looking after you. It's not that I want to be in the middle of everything - I don't - it's that I do get very lonely having to spend a week almost entirely on my own, and because I have this long-standing MRSA positive status I'm not allowed out of the room.
The trouble with getting lonely is that it makes me think, and I usually end up getting in to a negative frame of mind and thinking about all the difficult things that are going on. Sometimes that's just the immediate situation and the recent asthma crisis, but when there are other things outside of that going on then they often pile in too. Then I get in to a bit of a state - miserable, tearful, depressed even. Unfortunately this is what happened on Sunday as there have been rather a lot of other things going on in recent times. Some of things I'm not really at liberty to talk about here, but one that I will mention is that I've generally been a bit low, which you may well have picked up on in my post 'Identity'. I've actually started seeing a clinical psychologist in the last few weeks. This will only be for a short period as these days the NHS only offer between six to ten sessions as, sadly, there's an increasing demand for the service, but I've found the three I've had so far helpful, if difficult. Actually, when I went to see my GP last week, the original purpose for the appointment was to ask if I could temporarily increase my antidepressant. It's not that I'm really depressed, it's just that I felt like I was beginning to walk a tight-rope and I wanted to stop before I fell. It was only as a passing, exhausted, thought that I asked about the asthma, which led me to be admitted. So yes, things have been tricky recently and the isolation in here caused a bit of a meltdown on Sunday. I was completely miserable, and then totally lost all composure when the nurse came in to tell me that from Monday I wouldn't be able to use the toilet (I would have to use the commode instead) because of my MRSA positive status and the toilet is communal. Most of the other cubicles round here are only used through the week, either for sleep studies or for transplant assessment, so it had been okay to use the communal toilet during the weekend, but when Monday came it would be different. It was the last straw for me on Sunday and I broke down. I'm so lucky to have the care of such wonderful staff here though, and to have known them for so many years, because their response wasn't one of bewilderment, but one of gentle concern, an opportunity to talk for a bit about all the things going on for me, and a big hug. As it turned out, the lovely nurse who had given me the news on Sunday felt so guilty for making me upset that on Monday she said that they'd swung it so that I could use the toilet and the other, more mobile (and transient) patients could use other toilets.
To someone on the outside it must seem like such a trivial thing - the use of a toilet - but believe me, commodes are demoralising, even when you're in a room of your own. It is a big deal to be able to use a normal loo. It is a big deal not to have to lie in bed and wait for someone to bring you a chair with a bedpan in the bottom, which may not arrive in time if you're suddenly desperate. Sometimes the logistics of using a commode aren't easy if you have a sudden release from constipation (I'll let your imagination do the work), or what, if has happened to me before, there's a hole in the bottom of the bedpan that's in the commode? No, it really is a horrible thing to have to use a commode and it really makes a big difference if you can use a proper toilet.
So Sunday was emotionally horrible, but Monday improved with a visit from my mum. She came down from Edinburgh for two hours to see me and she didn't tell me she was coming until she was sitting on the train. How lovely is that? It was fab to see her, and wonderful to have a Mum-hug. I had another visitor that day too, my friend O. She had been coming down to Newcastle anyway (again, from Edinburgh) because we had been meant to go to a concert together in the evening. O still went to the concert, I'm pleased to say, but she also came to the hospital to visit me. By the time she left to make her way straight to the concert venue I was feeling very much chirpier despite missing the gig.
I've moment of being low since then, but due to something very specific that I'll write about in another post very soon, but I've otherwise managed to remain fairly positive since Monday. I'm confident that tomorrow will be a positive day too since the thing that I'll write about in my next post has been dealt with (in as much as it can at this stage) and I'll be heading home. This might be crazy, but regardless of how tired I am when I get home tomorrow, in the evening I'll be heading to Flotsam for a quick burst of normality at the end of a stressful seven days.
Thursday, 15 November 2012
All sorts
There's a lot going on at the moment, some of it good, some of it very good, some of it not so good at all.
One of the very good things is that I got the final results for my MA and I got a Merit. Hurray! If I'm honest, I was actually slightly disappointed with this at first, but that's only because I set the expectations for myself very high, and actually, when I'd had time to reflect on it, I'm still proud of myself. It's been a tough year, and to get through the course has been difficult enough at times, so to get a high Merit is good going. When I had a look at my marked dissertation/portfolio there were a few points where I felt I could come back to the markers with comments, but of course that's not possible. All in all, a good thing. A very good thing. I'm looking forward to graduating on 6th December.
Another good thing is that I've been involved in setting up a choir. I'm not running it, but I've been helping find the venue, set up the bank account, help with advertising, setting up and checking the email account, taking subs, etc. Many years ago I was in a youth choir, Swing Bridge Singers - I've spoken about them before. I loved it, and it was probably the one good thing in my teenage years. The conductor/musical director (Scottee) is one of my most favourite people, as he is for many of the 600 or so people who have now passed through Swing Bridge Singers. After a lot of years of being asked by ex-SBSers and SBS parents, Scottee agreed to do an adult version of Swing Bridge Singers. We are called Flotsam and had our first rehearsal last week. There was no way of knowing how many people would turn up, and whether or not we would have a choir, but in the event thirty two folk came along! Not a bad turn out for week one. The second rehearsal is this evening, and we're hoping for a few more folk to come, especially men as we only had four last week. The four we had were very good, but they were rather outnumbered. I'm loving it though. I came out last week feeling a bit more alive and reconnected with the world :o)
Now one of the not so good things is that my lungs are playing up. During the day I'm not too bad. My peak flow isn't very good, at an average of around 150, but at night time things are going totally pear-shaped. I cough. I wheeze. I'm breathless. I use my nebuliser again and again, and eventually it settles, but not until around 5.30am, and I'm getting exhausted. I went to my GP today, knowing that there's not really anything she can do, although she did say to increase my furosemide (diuretic) in case my lungs are filling with fluid at night. Then she suggested I get in touch with my consultant. I have done that, and eventually got past his gate-keeper secretary, who started off saying that I should see my own GP, but then listened when I said that actually I was phoning on the advice of my GP. My consultant has been busy all day, but his Registrar phoned me. When I explained what was happening, and explained what medication I'm on he said he wasn't sure what to do either, but would speak to 'The Boss' and get back to me. He has just done so, as I've been typing this. The upshot is that they want me to go into hospital :o( They want me to have some IV aminophylline and to try to stabilise things. They want me to go in tonight :o( This means I'm going to miss tonight's Flotsam :o( They haven't actually got a bed for me at the moment, but the Registrar said they're going to make one - perhaps literally - and he'll phone me when they've got one :o( I said to him that, if they can't get a bed tonight, I could go in tomorrow instead. I was trying not to sound too hopeful, but I really wanted to go to Flotsam. The Reg said that they really want me in tonight in case tonight is the night that everything goes belly-up :o( I completely understand, and my rational head agrees with him, but I don't like it.
There's a load of other stuff going on too. Stuff I can't talk about here. That's the very not good stuff.
Anyway, I'm going to have to go because the Registrar has just phoned me back to say they've got a bed :o(
Booo
One of the very good things is that I got the final results for my MA and I got a Merit. Hurray! If I'm honest, I was actually slightly disappointed with this at first, but that's only because I set the expectations for myself very high, and actually, when I'd had time to reflect on it, I'm still proud of myself. It's been a tough year, and to get through the course has been difficult enough at times, so to get a high Merit is good going. When I had a look at my marked dissertation/portfolio there were a few points where I felt I could come back to the markers with comments, but of course that's not possible. All in all, a good thing. A very good thing. I'm looking forward to graduating on 6th December.
Another good thing is that I've been involved in setting up a choir. I'm not running it, but I've been helping find the venue, set up the bank account, help with advertising, setting up and checking the email account, taking subs, etc. Many years ago I was in a youth choir, Swing Bridge Singers - I've spoken about them before. I loved it, and it was probably the one good thing in my teenage years. The conductor/musical director (Scottee) is one of my most favourite people, as he is for many of the 600 or so people who have now passed through Swing Bridge Singers. After a lot of years of being asked by ex-SBSers and SBS parents, Scottee agreed to do an adult version of Swing Bridge Singers. We are called Flotsam and had our first rehearsal last week. There was no way of knowing how many people would turn up, and whether or not we would have a choir, but in the event thirty two folk came along! Not a bad turn out for week one. The second rehearsal is this evening, and we're hoping for a few more folk to come, especially men as we only had four last week. The four we had were very good, but they were rather outnumbered. I'm loving it though. I came out last week feeling a bit more alive and reconnected with the world :o)
Now one of the not so good things is that my lungs are playing up. During the day I'm not too bad. My peak flow isn't very good, at an average of around 150, but at night time things are going totally pear-shaped. I cough. I wheeze. I'm breathless. I use my nebuliser again and again, and eventually it settles, but not until around 5.30am, and I'm getting exhausted. I went to my GP today, knowing that there's not really anything she can do, although she did say to increase my furosemide (diuretic) in case my lungs are filling with fluid at night. Then she suggested I get in touch with my consultant. I have done that, and eventually got past his g
There's a load of other stuff going on too. Stuff I can't talk about here. That's the very not good stuff.
Anyway, I'm going to have to go because the Registrar has just phoned me back to say they've got a bed :o(
Booo
Saturday, 27 October 2012
Identity
Who are you? What makes you who you are? Do you ever think about that? When people ask you who you are, what do you answer? Do you say that you're so-and-so's sister or brother, son or daughter? Do you say that you're the person who lives at number x of y street? Do you identify yourself by the job you do, the people you work for, the people who work for you?
I'm going through a time of flux at the moment, and a time when I don't know what to say when people ask me what I do. What do I do? For the past six years, up until the end of August this year, I could say that I was a student. First of all I was a student with the Open University doing my undergraduate degree; then I was at student at Newcastle University doing an MA. Now? Now I, um, now I'm not very sure.
In theory, I'm a writer. In theory, I'm writing the rest of my book about asthma, and a children's book about my cat. In practice, I haven't actually written since I finished my MA portfolio. I needed the break. I needed a rest after getting utterly exhausted from having to keep going through the course of my studies. I want to write the books I'm 'writing', but I'm stuck in a rut of not writing. To be honest, I'm a bit low. I have nothing to focus my mind on writing, or anything else for that matter. I need to get writing again, but the stuff I'm writing for my book about asthma is very emotionally draining, and I'm feeling a little fragile.
And what then? What about when I've finished the book? What if nobody wants to publish it? Can I call myself a writer if I haven't been published? And that question is relevant to both when I've finished writing the book and to now. I don't want to self-publish. Yes, it's a possibility, but it's not the route I want to go down. I want to be published 'properly'. This is a bit of a ridiculous question to be worrying about at the moment, given that I've only got about 30 000 words of my book at the moment. Also, my supervisor for my Post Graduate Certificate portfolio suggested a publisher she thought might be suitable for me to approach when the time came, so it's even more ridiculous to be worrying about it when there's a slight possibility of a publisher.
So if I don't identify myself by the job I do or don't do, then how do I identify myself? What about you? Who would you say you are if were to take your job/career away? Is it by family? I have parents, yes, and siblings, yes, but they don't define me. Their existence doesn't say who I am, even if their existence contributes to who I am...
I'm confusing myself now...
But there's more, more to do with my identity and the question of who I am. It's difficult to explain, but it's to do with having carers. They only come three times a week, although it was recently suggested that I have them more frequently. I turned down the suggestion. Yes, it might be helpful, but it makes me even more dependent on others, and thus strips me of independence. I'm only thirty eight. I don't want to be dependent on others for normal things of daily living. I don't want to have to be reliant on others to cook my meals, to clean my house, to do anything for me. It might seem like a dream to some, to have people come in and cook for you, do your ironing, clean your home, change your bed linen. Perhaps it is if it's a choice, but when it's a necessity it's different. When it's a necessity it challenges your perception of yourself, and it challenges others' perception of you too. Suddenly you become the needy one, the one who can't do things, the person who is not quite so easy to be with, the person who is different. I don't want that. I know that I am that.
On the whole, people who care - either professionally or voluntarily - are good people. They want to help. Help is good, but help can also be limiting. The fact that I have these people to do things for me means that I don't do them for myself. That's great if it's things that I can't do any more, but not so good if there are things that maybe I could do for myself sometimes. I don't know what these things are, if I'm honest, but I suppose that what I'm getting at is that sometimes disability can itself be disabling. Because there are things you can't do then sometimes it is presumed that there are other things that you can't do so you suddenly find that they're done for you. Again, there are no specific instances of this that I can think of, but I know that this has happened, and I resent its possibility in the future.
The more that things I can do/am able to do are taken from me, either by health or carers, the less I know about who I am. The less I know what my identity is. All I do know at this point in time, is that I don't want to be the person who does nothing, who needs everything doing for them, who needs help all the time, who is difficult to be with, who is different.
I want back some of who I used to be.
I'm going through a time of flux at the moment, and a time when I don't know what to say when people ask me what I do. What do I do? For the past six years, up until the end of August this year, I could say that I was a student. First of all I was a student with the Open University doing my undergraduate degree; then I was at student at Newcastle University doing an MA. Now? Now I, um, now I'm not very sure.
In theory, I'm a writer. In theory, I'm writing the rest of my book about asthma, and a children's book about my cat. In practice, I haven't actually written since I finished my MA portfolio. I needed the break. I needed a rest after getting utterly exhausted from having to keep going through the course of my studies. I want to write the books I'm 'writing', but I'm stuck in a rut of not writing. To be honest, I'm a bit low. I have nothing to focus my mind on writing, or anything else for that matter. I need to get writing again, but the stuff I'm writing for my book about asthma is very emotionally draining, and I'm feeling a little fragile.
And what then? What about when I've finished the book? What if nobody wants to publish it? Can I call myself a writer if I haven't been published? And that question is relevant to both when I've finished writing the book and to now. I don't want to self-publish. Yes, it's a possibility, but it's not the route I want to go down. I want to be published 'properly'. This is a bit of a ridiculous question to be worrying about at the moment, given that I've only got about 30 000 words of my book at the moment. Also, my supervisor for my Post Graduate Certificate portfolio suggested a publisher she thought might be suitable for me to approach when the time came, so it's even more ridiculous to be worrying about it when there's a slight possibility of a publisher.
So if I don't identify myself by the job I do or don't do, then how do I identify myself? What about you? Who would you say you are if were to take your job/career away? Is it by family? I have parents, yes, and siblings, yes, but they don't define me. Their existence doesn't say who I am, even if their existence contributes to who I am...
I'm confusing myself now...
But there's more, more to do with my identity and the question of who I am. It's difficult to explain, but it's to do with having carers. They only come three times a week, although it was recently suggested that I have them more frequently. I turned down the suggestion. Yes, it might be helpful, but it makes me even more dependent on others, and thus strips me of independence. I'm only thirty eight. I don't want to be dependent on others for normal things of daily living. I don't want to have to be reliant on others to cook my meals, to clean my house, to do anything for me. It might seem like a dream to some, to have people come in and cook for you, do your ironing, clean your home, change your bed linen. Perhaps it is if it's a choice, but when it's a necessity it's different. When it's a necessity it challenges your perception of yourself, and it challenges others' perception of you too. Suddenly you become the needy one, the one who can't do things, the person who is not quite so easy to be with, the person who is different. I don't want that. I know that I am that.
On the whole, people who care - either professionally or voluntarily - are good people. They want to help. Help is good, but help can also be limiting. The fact that I have these people to do things for me means that I don't do them for myself. That's great if it's things that I can't do any more, but not so good if there are things that maybe I could do for myself sometimes. I don't know what these things are, if I'm honest, but I suppose that what I'm getting at is that sometimes disability can itself be disabling. Because there are things you can't do then sometimes it is presumed that there are other things that you can't do so you suddenly find that they're done for you. Again, there are no specific instances of this that I can think of, but I know that this has happened, and I resent its possibility in the future.
The more that things I can do/am able to do are taken from me, either by health or carers, the less I know about who I am. The less I know what my identity is. All I do know at this point in time, is that I don't want to be the person who does nothing, who needs everything doing for them, who needs help all the time, who is difficult to be with, who is different.
I want back some of who I used to be.
Thursday, 25 October 2012
Norfolk (part two)
It seems a long time ago now that W and I were in Norfolk, but I do owe you all another post about the things we got up to. We crammed a lot in to our time away, whilst still managing to have a few days around the cottage and the local village. However, we couldn't go that close to the regional capital without spending a day in Norwich, so we took the Park and Ride in to the city centre one day and went visiting the cathedrals. There are two in Norwich (as there are in many cities) - the Catholic and the Anglican - and we went to the Catholic one first, passing through a lovely park on the way:
It looks old, doesn't it? I have to say that I felt a little cheated to find out that it was only built in 1910. It's still lovely, though, so I don't mind too much.
And then we arrived at Norwich Cathedral:
The font is unusually placed along the side of one of the aisles, but it was one that I particularly liked. There's a sign next to it that explains that it used to be a vat in a chocolate factory, and was donated to the Cathedral by the factory. I'm not sure if this is when the factory closed, or at some other time. I love the idea of being baptised in a chocolate vat:
Isn't it fabulous?
Sadly we weren't able to stay for evensong that was just about to start as we left, because we'd have missed the last bus back to the Park and Ride car park. That was a bit disappointing, but we did have a pleasant walk/trundle back through the city to the bus station.
Where we were staying in Stratton St Michael was only about a half hour drive from a small zoo - Banham Zoo. W and I both love animals and wildlife so it was a natural thing for us to visit the zoo, especially as we were so close. There were mixed reviews of it in the cottage's visitors' book, but we really enjoyed it, despite it being the one day when we had torrential rain, although the rest of the country had it much worse. In fact it was so bad in other parts of the country later in the week that the A1 got flooded and was closed. We were keeping an eye on this as the A1 was, of course, our route back up North, and it was looking as though we wouldn't be able to get back home. The week progressed, and although we had pretty good weather, the rain in other parts of England was awful, so much so that the diversion route off the A1 then became flooded. Although we had a couple of days left before the planned end to our holiday, we had to make a decision - were we going to try getting home on the Saturday with no guarantee of making it, or were we going to see if a couple of extra days would give the road chaos a chance to settle. In the end we settled for the latter, and after talking with the cottage proprietors (and W clearing it with work), we arranged to stay until the Monday. Although we might have managed to get back on the Saturday, I suspect that the goods vehicles that couldn't get through earlier in the week might well have clogged up the A1, and certainly when we were driving back on Monday there was still a lot of evidence of the floods. By this time the water on the road had been cleared - pumped off by the fire brigade - but there were many, many fields along the way that were still like lakes. As it was, it still took us eight hours to get back!
So anyway, with our extra time in Norfolk we decided to make the most of it, and on the Saturday when we should have been coming home, instead we went to another zoo - Africa Alive - just outside Lowestoft in Suffolk. Africa Alive is much bigger than Banham Zoo, but it's owned by the same people. I have to say that at both places I thought that some of the cages were a little small, but the animals were obviously well cared for, and none of them seemed distressed. I will leave you this evening with a selection of photos from Banham Zoo and Africa Alive. I have rather a lot of these photos so I'll try to limit those I put up, but it's going to be hard, and I predict a bit of an animal overload for you ;oP
Enjoy!
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| Bandstand in the park |
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| Gargoyle on the outside of the Catholic Cathedral |
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| The Nave of the Catholic Cathedral |
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| The south aisle of the Catholic Cathedral |
It looks old, doesn't it? I have to say that I felt a little cheated to find out that it was only built in 1910. It's still lovely, though, so I don't mind too much.
We had a very pleasant walk then to the Anglican Cathedral, which is simply called Norwich Cathedral. One of the streets we went along had lots of plaques laid in to the pavement representing different professions. Here's one of them:
And then we arrived at Norwich Cathedral:
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| The East end of the Cathedral |
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| Seen from the cloisters |
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| The cloisters |
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| Chocolate pot font |
Isn't it fabulous?
Sadly we weren't able to stay for evensong that was just about to start as we left, because we'd have missed the last bus back to the Park and Ride car park. That was a bit disappointing, but we did have a pleasant walk/trundle back through the city to the bus station.
Where we were staying in Stratton St Michael was only about a half hour drive from a small zoo - Banham Zoo. W and I both love animals and wildlife so it was a natural thing for us to visit the zoo, especially as we were so close. There were mixed reviews of it in the cottage's visitors' book, but we really enjoyed it, despite it being the one day when we had torrential rain, although the rest of the country had it much worse. In fact it was so bad in other parts of the country later in the week that the A1 got flooded and was closed. We were keeping an eye on this as the A1 was, of course, our route back up North, and it was looking as though we wouldn't be able to get back home. The week progressed, and although we had pretty good weather, the rain in other parts of England was awful, so much so that the diversion route off the A1 then became flooded. Although we had a couple of days left before the planned end to our holiday, we had to make a decision - were we going to try getting home on the Saturday with no guarantee of making it, or were we going to see if a couple of extra days would give the road chaos a chance to settle. In the end we settled for the latter, and after talking with the cottage proprietors (and W clearing it with work), we arranged to stay until the Monday. Although we might have managed to get back on the Saturday, I suspect that the goods vehicles that couldn't get through earlier in the week might well have clogged up the A1, and certainly when we were driving back on Monday there was still a lot of evidence of the floods. By this time the water on the road had been cleared - pumped off by the fire brigade - but there were many, many fields along the way that were still like lakes. As it was, it still took us eight hours to get back!
So anyway, with our extra time in Norfolk we decided to make the most of it, and on the Saturday when we should have been coming home, instead we went to another zoo - Africa Alive - just outside Lowestoft in Suffolk. Africa Alive is much bigger than Banham Zoo, but it's owned by the same people. I have to say that at both places I thought that some of the cages were a little small, but the animals were obviously well cared for, and none of them seemed distressed. I will leave you this evening with a selection of photos from Banham Zoo and Africa Alive. I have rather a lot of these photos so I'll try to limit those I put up, but it's going to be hard, and I predict a bit of an animal overload for you ;oP
Enjoy!
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| Ringtailed Lemurs - Mother and baby. |
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| Baby Lemur sitting on my knee trying to work out how to control the wheelchair. |
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| Meerkats relaxing in the sunshine. |
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| Spiny mice. |
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| Foxes, but I've forgotten what kind. |
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| Cheetah. |
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| Elephants ;oP |
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| 'Allo. You looking for me? |
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| Fighting cattle/bison. |
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| 'Zero', the alpha male lion at Africa Alive. |
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| Fighting lions with Zero looking on. |
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| Llama |
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| Larakeet |
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| Spider Monkey |
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| W hand feeding a larakeet |
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| Parakeet |
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| A yawny leopard |
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| Oh, 'ello. Can I 'elp you? |
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| Snow Leopard |
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| Jackass Penguins |
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| Short-clawed Otter |
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| Snack time for the tiger |
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| Longing for freedom? |
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| Red Panda |
Sunday, 21 October 2012
Interlude
The plan had been to write a second post about Norfolk a couple of days after the first. Plans don't always go as I'd hope, and this time it certainly hasn't. A day or two after my last post I started to feel grotty. It wasn't anything particularly tangible - a deep fatigue and malaise, and an inability even to think properly. I was hoping it was just a bad day of some kind as I was supposed to be going to Liverpool the next day to meet up with some good friends from the Open University.
That night (Thursday) I had an awful night. I didn't sleep well, I was very restless, I just didn't feel well, and when my alarm went off on Friday morning I felt awful. My insides decided they'd prefer to be on the outside and my temperature was up to 39.7C. There was absolutely no way I was going to get to Liverpool, but to be honest, I felt too ill to be too disappointed.
I couldn't keep my meds down, and I was concerned that my asthma would get completely out of control because of that. My temperature wasn't responding to the tiny amount of paracetamol that I did manage to get inside me, and I was becoming dehydrated. I rang the GP. When I said to the receptionist that I think I needed a home visit she sounded a bit incredulous, but really she should know that I would never ask for a home visit if there was any chance I could get to the surgery. She said that the doctor might just phone me, instead of visiting.
The doctor did ring me, but he said he was quite concerned so would do a home visit too. I unlocked the door the next time I got up to go to the bathroom, and when Dr Cn arrived he let himself in. He could see that I really wasn't well, and he was also worried that I wasn't able to keep my meds down, so he prescribed some Buccastem - an antisickness tablet that dissolves slowly in the mouth. He then rang the local pharmacy and got them to deliver it to my home, telling them that I was in no way well enough to go to the pharmacy myself. I then gave them the prescription Dr Cn had left when they came around with the meds.
The day passed in a haze with weird dreams of high temperature, interspersed with many, many trips to the bathroom. The doctor then rang me again before he left work for home at the end of the day. He asked if I'd be okay. I said that I probably would, but I was thinking, 'I don't know. You're the doctor.' Anyway, he told me that I should contact the out of hours doctors immediately if I got any worse or was at all worried. I promised I would.
The cat was obviously really worried as he wouldn't leave my side. This may sound odd, but Zach is very sensitive, and when I'm ill at night with my asthma he pats my face gently with his paw until I wake up. He then watches me intently until I'm sorted and breathing easier. He didn't need to wake me on the Friday, but he did stay glued to my side, following me into the bathroom and watching me closely all the time. W came round in the evening and she realised that Zach must be starving because he hadn't touched his food in the kitchen. He wouldn't go through to the kitchen because he was too busy guarding me, but W brought his food into my bedroom and he snaffled it down.
W was brilliant (as ever). She cleaned my toilet and the bin that I'd earlier vomited in because I couldn't get to the bathroom fast enough. She went back to her house and brought her fan back to mine to try to help cool me down. She sat with me for several hours until I was fast asleep, sometime in the early hours of the morning.
Saturday was much the same as Friday, but I was getting more dehydrated. When W came round in the evening she went to the supermarket for me to get some rehydration salts (and she also came back with some beautiful flowers that cheered me up loads). She checked the ingredients in the shop. I checked the ingredients when she got to mine with them. W checked the ingredients again. I checked the ingredients again, and again for luck. There didn't seem to be anything in them that I am allergic to, so I set to trying to get them into me and keep them down.
Twenty or so minutes after taking the rehydration salts I was lying in bed (in fresh sheets that W had just changed for me) when I realised that I was itching a lot. Then my eyes started to get itchy and sore and my left eye was swelling up. I took some antihistamine, but still, my lungs began to tighten and I could feel my throat beginning to swell. When my nebuliser did nothing to ease the chest tightness and wheezing, and I was being more sick than I had been, I knew I had to take my epi-pen. I was heading towards anaphylaxis.
The protocol for anaphylaxis is that when you use an epi-pen you have to go to hospital. You should also call an ambulance to get to hospital. I hate ambulances. I did go to hospital, but W took me in her car... Thankfully, we got there no problem, and possibly quicker than in an ambulance as it was a Saturday night in Newcastle.
I was seen as soon as we went into A&E, and taken straight through for treatment. The department was full of drunks and people laid out on trolleys in various states of drunken unconsciousness. The bloke in the bed next to me was absolutely wasted, and trying to get up despite being in head blocks because he had a suspected broken neck. The poor nurses really had their hands full. But regardless of that, they were great with me.
Once I was stabilised in A&E I was taken to the Emergency Admissions Unit where I spent the rest of the night and most of the next day. The anaphylaxis was settling well, but I still had a high temperature, I was still vomiting, and I still had bad diarrhoea so I was far from well. The medics said they wanted to keep me in for a while, but said that they'd probably keep me in my side room on EAU. This is why it was a particular surprise when the porter came to take me to the ward. Nobody had told me I was going to the ward, or what kind of ward it was, so it was even more of a surprise when the porter said I was going to the ward for Tropical Diseases!
It turned out that the ward for Tropical Diseases is also the ward for Infectious Diseases, which gastroenteritis certainly is, and a ward for those with compromised immune systems. Nonetheless, it was still somewhat unnerving to be going there, and even more so when I arrived. The Tropical and Infectious Diseases ward is the only ward on the top floor of an isolated part of the hospital. The corridor leading to the ward is locked. The door going on to the ward is locked. There is a red light above the door that indicates when someone on the ward has something particularly nasty. Each patient has their own room, and each room has a double door/airlock entry system. Each cubicle can have the pressure inside adapted (I guess some tropical diseases affect pressures, or something), and each room has a camera on the wall so that the patient can be watched with medical staff requiring as little contact as possible. At night time the camera lens is encircled by red LED eyelashes so that the patient can still be seen in the dark. The windows in the room don't open. People hardly ever come in, and when they do they're clad in apron and gloves. You see these kinds of wards on apocalyptic sci-fi films, but you never think they really exist. You think there must be some artistic licence for dramatic effect, but no, they do really exist, and I found myself on one. It was all very, very surreal.
I was on the T&ID ward for three days before coming home on Wednesday evening. I'm a lot better than I was - so, so much better than I was - but I'm still not right. It turned out that the gastroenteritis was a bacterial bug, and one that's reportable to the Health Protection Agency, so apparently I might get a call from them to see if they can locate the source of the infection. I have an idea, but I'll leave it up to the HPA to confirm or otherwise.
I am now completely wiped out. I still don't feel terribly well, and apparently I could have some symptoms for up to four weeks! I think this is going to be a slow recovery, and definitely not helped by the anaphylactic reaction. W and I have contacted the manufacturers of the rehydration salts about that. The only thing it can have been that caused the reaction is the flavouring, for which the ingredients weren't listed, and under the 'side effects' section in the patient information leaflet it says, 'None known.' I've filled in a couple of forms for them, and they're also sending one of the sachets off to Germany to be analysed, so at least they're taking it seriously, although I'm still going to try to get in touch with them to find out what the ingredients are in the flavouring. It's important that I know. Either there's something in it that I know I am allergic to, but which isn't listed in the ingredients, or I have developed an allergy to something else. I just hope they give me the information I need.
It's been quite some week. I'm hoping for a much less eventful week this week.
That night (Thursday) I had an awful night. I didn't sleep well, I was very restless, I just didn't feel well, and when my alarm went off on Friday morning I felt awful. My insides decided they'd prefer to be on the outside and my temperature was up to 39.7C. There was absolutely no way I was going to get to Liverpool, but to be honest, I felt too ill to be too disappointed.
I couldn't keep my meds down, and I was concerned that my asthma would get completely out of control because of that. My temperature wasn't responding to the tiny amount of paracetamol that I did manage to get inside me, and I was becoming dehydrated. I rang the GP. When I said to the receptionist that I think I needed a home visit she sounded a bit incredulous, but really she should know that I would never ask for a home visit if there was any chance I could get to the surgery. She said that the doctor might just phone me, instead of visiting.
The doctor did ring me, but he said he was quite concerned so would do a home visit too. I unlocked the door the next time I got up to go to the bathroom, and when Dr Cn arrived he let himself in. He could see that I really wasn't well, and he was also worried that I wasn't able to keep my meds down, so he prescribed some Buccastem - an antisickness tablet that dissolves slowly in the mouth. He then rang the local pharmacy and got them to deliver it to my home, telling them that I was in no way well enough to go to the pharmacy myself. I then gave them the prescription Dr Cn had left when they came around with the meds.
The day passed in a haze with weird dreams of high temperature, interspersed with many, many trips to the bathroom. The doctor then rang me again before he left work for home at the end of the day. He asked if I'd be okay. I said that I probably would, but I was thinking, 'I don't know. You're the doctor.' Anyway, he told me that I should contact the out of hours doctors immediately if I got any worse or was at all worried. I promised I would.
The cat was obviously really worried as he wouldn't leave my side. This may sound odd, but Zach is very sensitive, and when I'm ill at night with my asthma he pats my face gently with his paw until I wake up. He then watches me intently until I'm sorted and breathing easier. He didn't need to wake me on the Friday, but he did stay glued to my side, following me into the bathroom and watching me closely all the time. W came round in the evening and she realised that Zach must be starving because he hadn't touched his food in the kitchen. He wouldn't go through to the kitchen because he was too busy guarding me, but W brought his food into my bedroom and he snaffled it down.
W was brilliant (as ever). She cleaned my toilet and the bin that I'd earlier vomited in because I couldn't get to the bathroom fast enough. She went back to her house and brought her fan back to mine to try to help cool me down. She sat with me for several hours until I was fast asleep, sometime in the early hours of the morning.
Saturday was much the same as Friday, but I was getting more dehydrated. When W came round in the evening she went to the supermarket for me to get some rehydration salts (and she also came back with some beautiful flowers that cheered me up loads). She checked the ingredients in the shop. I checked the ingredients when she got to mine with them. W checked the ingredients again. I checked the ingredients again, and again for luck. There didn't seem to be anything in them that I am allergic to, so I set to trying to get them into me and keep them down.
Twenty or so minutes after taking the rehydration salts I was lying in bed (in fresh sheets that W had just changed for me) when I realised that I was itching a lot. Then my eyes started to get itchy and sore and my left eye was swelling up. I took some antihistamine, but still, my lungs began to tighten and I could feel my throat beginning to swell. When my nebuliser did nothing to ease the chest tightness and wheezing, and I was being more sick than I had been, I knew I had to take my epi-pen. I was heading towards anaphylaxis.
The protocol for anaphylaxis is that when you use an epi-pen you have to go to hospital. You should also call an ambulance to get to hospital. I hate ambulances. I did go to hospital, but W took me in her car... Thankfully, we got there no problem, and possibly quicker than in an ambulance as it was a Saturday night in Newcastle.
I was seen as soon as we went into A&E, and taken straight through for treatment. The department was full of drunks and people laid out on trolleys in various states of drunken unconsciousness. The bloke in the bed next to me was absolutely wasted, and trying to get up despite being in head blocks because he had a suspected broken neck. The poor nurses really had their hands full. But regardless of that, they were great with me.
Once I was stabilised in A&E I was taken to the Emergency Admissions Unit where I spent the rest of the night and most of the next day. The anaphylaxis was settling well, but I still had a high temperature, I was still vomiting, and I still had bad diarrhoea so I was far from well. The medics said they wanted to keep me in for a while, but said that they'd probably keep me in my side room on EAU. This is why it was a particular surprise when the porter came to take me to the ward. Nobody had told me I was going to the ward, or what kind of ward it was, so it was even more of a surprise when the porter said I was going to the ward for Tropical Diseases!
It turned out that the ward for Tropical Diseases is also the ward for Infectious Diseases, which gastroenteritis certainly is, and a ward for those with compromised immune systems. Nonetheless, it was still somewhat unnerving to be going there, and even more so when I arrived. The Tropical and Infectious Diseases ward is the only ward on the top floor of an isolated part of the hospital. The corridor leading to the ward is locked. The door going on to the ward is locked. There is a red light above the door that indicates when someone on the ward has something particularly nasty. Each patient has their own room, and each room has a double door/airlock entry system. Each cubicle can have the pressure inside adapted (I guess some tropical diseases affect pressures, or something), and each room has a camera on the wall so that the patient can be watched with medical staff requiring as little contact as possible. At night time the camera lens is encircled by red LED eyelashes so that the patient can still be seen in the dark. The windows in the room don't open. People hardly ever come in, and when they do they're clad in apron and gloves. You see these kinds of wards on apocalyptic sci-fi films, but you never think they really exist. You think there must be some artistic licence for dramatic effect, but no, they do really exist, and I found myself on one. It was all very, very surreal.
I was on the T&ID ward for three days before coming home on Wednesday evening. I'm a lot better than I was - so, so much better than I was - but I'm still not right. It turned out that the gastroenteritis was a bacterial bug, and one that's reportable to the Health Protection Agency, so apparently I might get a call from them to see if they can locate the source of the infection. I have an idea, but I'll leave it up to the HPA to confirm or otherwise.
I am now completely wiped out. I still don't feel terribly well, and apparently I could have some symptoms for up to four weeks! I think this is going to be a slow recovery, and definitely not helped by the anaphylactic reaction. W and I have contacted the manufacturers of the rehydration salts about that. The only thing it can have been that caused the reaction is the flavouring, for which the ingredients weren't listed, and under the 'side effects' section in the patient information leaflet it says, 'None known.' I've filled in a couple of forms for them, and they're also sending one of the sachets off to Germany to be analysed, so at least they're taking it seriously, although I'm still going to try to get in touch with them to find out what the ingredients are in the flavouring. It's important that I know. Either there's something in it that I know I am allergic to, but which isn't listed in the ingredients, or I have developed an allergy to something else. I just hope they give me the information I need.
It's been quite some week. I'm hoping for a much less eventful week this week.
Sunday, 7 October 2012
Norfolk (part one)
I broke my promise to get back to you before the week was out. I'm sorry. You see, I was too busy having fun to update my blog through the day, and either too tired or too busy trying to get my sat nav working in the evenings. After having got to our holiday destination without a working sat nav (yes, I used the old method of using sign posts *shock!*), I thought it would be a lot easier to get around to our various planned days out if I were to get it working. I did, eventually, although it was a task and a half as I was working with a dodgy dongle connection most of the time.
Anyway, enough of boring technology stuff. The cottage that W and I had rented was gorgeous. It was plenty big enough for the two of us, easily wheelchair accessible through the patio doors, extremely well equipped. It wasn't huge, but it was attached to a fabulous detached house lived in by the cottage proprietors, and was surrounded by two acres of fabulous gardens that included a trampoline and a tennis court. Neither W nor I made use of the trampoline, but W, despite her arthritis, did leap on the trampoline one evening. Here are a couple of photos of the cottage, proprietor's house, the garden, and W on the trampoline:
We had a few days where we just pottered around the cottage and in the local area. The village we were staying in was Stratton St Michael, which is the northern end of Long Stratton, a little way outside of Norwich. As you might expect, there's the church of St Michael at Stratton St Michael, and at the other end of Long Stratton there's the church of St Mary, in the area of Stratton St Mary. W and I visited both the churches:
Both the churches were lovely, and there was a particularly lovely walk/trundle along the lane to St Michael's Church. There are a few houses, but mostly it's countryside with harvest fields on both sides, and occasional stretches of brambles loaded with ripening blackberries. The lane is fairly quiet, although it is a main route from the very busy A140 to a couple of small villages so we did come across several cars on each of our trips to and from the church. Here are a couple of photos taken along the lane:
I will leave you for now with a photo of the South Norfolk Council Offices in Long Stratton. I sincerely hope it's not the housing office:
I'll be back before long with part two, but I think that's probably enough for now.
Anyway, enough of boring technology stuff. The cottage that W and I had rented was gorgeous. It was plenty big enough for the two of us, easily wheelchair accessible through the patio doors, extremely well equipped. It wasn't huge, but it was attached to a fabulous detached house lived in by the cottage proprietors, and was surrounded by two acres of fabulous gardens that included a trampoline and a tennis court. Neither W nor I made use of the trampoline, but W, despite her arthritis, did leap on the trampoline one evening. Here are a couple of photos of the cottage, proprietor's house, the garden, and W on the trampoline:
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| Our cottage |
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| The proprietor's house with the cottage to the left |
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| Proprietor's house and some of the gardens |
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| W having an evening bounce on the trampoline |
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| An inflatable giraffe enjoying a cup of tea on the patio |
What do you mean 'you've never seen a giraffe enjoying a cup of tea on a patio before'? Georgina was out there for ages, making the most of the sunshine. She even had a piece of shortbread to go with her cuppa.
Away from the cottage we got up to all sorts of things. We went for a day on the Bure Valley Railway - a nine mile long narrow gauge steam railway from Aylsham to Wroxham:
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| Some of the carriage were wheelchair accessible! |
When we arrived at Wroxham we got a little lost trying to find our way to the mariner from where we had a boat trip booked. It might have been helpful if either of us had looked out our tickets from the railway, on which was a map detailing how to get from the station to the tour boats, but we did eventually make it, just in time. We had a fab trip on the boat, going along Wroxham Broad:
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| A Wroxham Broad 'street' |
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| One of the oldest boats on Wroxham Broad |
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| A very lush landscape |
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| George Formby's House |
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| An example of Norfolk thatched roofs, seen along Wroxham Broad |
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| The best sign seen on Wroxham Broad |
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| One of many swans on the Broad |
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| Several of the many swans seen on Wroxham Broad |
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| St Mary's Church |
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| Inside St Mary's Church |
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| St Michael's Church |
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| The font in St Michael's Church |
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| An angel with a child on a small plinth by a window in St Michael's Church. |
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| Our cottage and the proprietor's house seen from the lane |
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| A grumpy-looking hare in a field by the lane |
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| A rabbit in a field by the lane |
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| A rather magnificent tree at the far end of the lane to St Michael's Church |
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| Looking lovely, but a tad overgrown |
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