A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Saturday, 29 August 2009


I'm back home. I got home on Wednesday night after battling for an hour with the Edinburgh traffic before managing to make it onto the A1, and then crawling my way down a stretch of the A1 where they were doing roadworks and taking us down in convoy to ensure a 10 mph speed limit. I eventually made it back around 10.30pm, and of course then it took me a while to wind down after the drive before I could sleep, so when it came to getting up for my hospital appointment on Thursday I wasn't too impressed with it being morning. I managed it though ... not that it was exactly revelatory, and there haven't been any magnificent advances in the treatment of severe asthma in the past three weeks, so we spent most of the time talking about my consultant's holiday to Spain and his past holidays to Greece when he liked to go island-hopping 'as a youngster' :o) However, I did mention the fainting to him, which I thought was a good move as it's now happened a couple of times, and there've been other times when I've felt faint but haven't actually passed out. He decided to take blood to check my Hb again, which I know is the right thing to do, but always seems a bit paradoxical to take haemoglobin out of me when I haven't got enough of it to begin with ;oP I'm guessing he'll write to the GP with any results.

I had a great time in Edinburgh and very much enjoyed all the things I went to at the Fringe Festival and the Book Festival. Apart from the passing out thingumy I think I'm doing a bit better physically now too and I'm slowly getting some strength back. Next on the agenda then is to get myself back to the gym (supervised exercise/physio) and get back to training for my Big Wheeze Gym Marathon. I wrote about this idea some time ago, but I have now (at last!) managed to get sorted with the info I wanted about the Ward fund and donating through Just Giving. I'm thinking of maybe setting up a temporary blog, which I'll link to from this one, to track my progress, but in the meantime, if you want to donate and/or read more about the event and what Ward 29 at Freeman Hospital does then you can do so at my Just Giving page All sponsorship is valuable and very welcome ... and now that I've set up the page and advertised it to the world then there's no backing out. Eek! Here's to my craziness, planned for 30th October 2009!

Monday, 24 August 2009

Ups and downs

I'm in Edinburgh, staying with Mum and doing some festival things. I've mainly been to things at the book festival, but I've also been to some things at the fringe. The combination of TLC from Mum, interesting talks at the book festival, and comedy and other distraction at the fringe festival events have been revitalising. Okay, so I'm knacked from doing a bit too much, but it's good to be away and to be doing fun things.

Last night we went to a wonderful ... exhibition ... experience ... thing at the botanic gardens - a sound and light show called Power Plant. We were admitted in groups of about 50, but it was unguided and you could take as much time as you liked to go around so long as you were out by midnight, because that's when they locked the gates. The 'show' consists of various light and sound installations mainly in the glass houses, although one or two of the 'sculptures' are outside, and the audience walk through at their leisure taking whatever time they want. Because it's dark then everyone has to go slowly, which is rather nice as it takes the rush out of life and makes you appreciate what's going on around you. Many of the things are quite ethereal and surreal, and we came out feeling a bit like we'd been in some Dr Who experience, but in a good way, and actually as you progressed through the 'exhibition' (I'm still not sure what to call it) you could see people relaxing and smiling as they wandered around. I took some photos and I'll post some up when I've downloaded them onto my computer so that you get more idea of what it was like.

Earlier in the week I went to see Paul Merton's Improv Chums which was great fun, very funny and impressively clever. I've wanted to see Paul Merton live for years, but never been organised enough to book well enough in advance. This year I had loads of time to plough my way through the Fringe Festival brochure while I was in hospital and mark things I wanted to go to and actually manage to book them from my hospital bed too. I love comedy and Paul Merton was hugely entertaining. It's a shame it was only an hour of unadulterated laughter, because it really picked up my spirits.

Some of the book festival talks I've been to have also been funny, in particular A. L. Kennedy, and to an extent Yasmin Alibhai-Brown, but the book festival is a very different format and, by the nature of the festival, has it's main focus on the writers' new or up-coming books. The format generally taken is discussion/interview between the Chair and the writer, followed by or interspersed with a reading from the book in question, and then comments or questions by the audience. Each talk is an hour and they're usually very different from one another, which provides an interesting variety to the day. Oh, and after each talk the authors almost always do a book signing so I tend to come away from the festival with a whole load of new books I want to read, but also don't want to damage or make look too well-read because they're signed.

I put my foot in it at one of the book signings the other day. I'd been to see Steve Bloom, who's an amazing (and very famous) photographer, primarily of wildlife. His presentation was quite different from any other I've been to at the book festival and largely comprised a slide show of about 150 of his photos while he talked about them and the taking of them. It was wonderful. I've seen some of his photographs before, but have to say that for the most part I haven't known that he'd taken them. Anyway, I thought I recognised a couple of the photos he showed the other day from the Wildlife Photographer of the Year exhibition that I went to with Dad the other week, and then thought I recognised his name from that exhibition, and in fact that he'd been the winner. After the talk/show/presentation I went to the book tent, bought a couple of his books (I wanted them all, told myself I could only afford one, and came away with two. Oops.) and queued up to get them signed. When I got to the front I asked him if I was right in thinking that he'd won Wildlife Photographer of the Year, and I was all ready to congratulate him, when he looked very uncertain and said, '... No ... I haven't entered that ...' Not quite knowing what to say now I tried to explain myself by saying that I was sure that I'd recognised some of his photos from the current WPY exhibition, and again he looked unsure and said, ' ... Not unless someone else has submitted my photos.' Hmmm, what to say now? 'Er, well ... hmm ... sorry ... I was ... um ... sorry about that.' Oh, what eloquence! I sloped off with my signed copies of his books feeling rather stupid and embarrassed.

It turns out the photographer I was misremembering as Steve Bloom was actually Steve Winter.

I have to admit that I think I've done rather too much while I've been up here. In a general way it'd be okay, but hot on the heels of having been so poorly, and still being significantly anaemic, I've pushed myself a little too far. This was pretty much confirmed by my passing out in the shower yesterday morning. I was washing my hair when suddenly everthing started to disappear, and then I slithered down the wall, passed out and came too in a heap on the floor. I don't think I was out for the count for long, but I was still fairly lucky not to knock my head on the tiles or succumb to inhalation of water ... er ... drowning. I managed to get up and then tried again to wash off the soap that I'd just slathered all over myself, but the world started to close in on me again so I gave up on that as a bad idea and decided that drying the soap off with a towel was a better option than acquainting myself with the floor again. However, I still found that it would be a good idea to spend a while sitting on the floor before making my way through to the bedroom, but I eventually made it ... and then collapsed onto the bed. This was a considerably softer landing than the shower floor, but still not a great position to find myself in, not least because I was soaking wet and making the bed soaking wet ... not that that kind of thing is in the forefront of one's mind when you're in the middle of passing out ... Anyway, I lay there for a bit, waited for the world to reappear and the noisy rush of fainting to disappear from the inside of my head and proceeded to get ready for the rest of the day. I managed to get through without any more passing out, but I did feel very feak and weeble and shaky all day. Definitely a sign that I've been doing a bit too much though so I've taken things easier today, and only have one event on at the book festival tomorrow and Wednesday (before I drive home). I think I may need to make an appointment with my GP for sometime when I get home though to get my Hb levels checked and make sure that they're not getting stupidly low again. It's probably wiser to do that than keep flaking out all over the place.

Tuesday, 18 August 2009


It's a bit delayed, but as predicted I've been having something of a rough time getting my head around the trauma of the last asthma attack. Maybe it's taken time to surface because I've still been so worn out from it, or maybe it's that I've been trying to push it away in an attempt to move on. I should know, though, that this never works long-term and it always comes back to bite in the end. That's where I've been up to this past week. I dunno ... it's just ... well having a stand-off with death is frightening ... not something you ever get used to, no matter how many times you go through it, after all, it's not as though I haven't had the fight for life before. I think maybe it was the repeated fear I saw on the face of everyone who treated me - not just a some, but everyone ... and the anaesthetist who clearly didn't wholly expect me to survive ... and their debate as to whether or not I'd ever manage to come off the ventilator if they intubated me, but what were the chances of my living if they didn't ... and the fact that I was so utterly exhausted from lack of sleep and inability to breathe before I even got to hospital, so I didn't believe that I had the energy to fight ... and that calm that descended when I fully realised the situation I was in and that no, I couldn't get through this on my own and that I may well not survive ... not a resignation as such ... more of an acceptance.

When I was in resus I was in the same bed-space that my friend Carol had been in when she'd had her heart attack. That was three and a half years ago now, but it's still an awful time to remember, and while I was fighting for my own life I was remembering Carol. And then the docs weren't convinced that I was going to be well enough for transfer across the city to RVI's Critical Care Unit so they were wanting to keep me at NGH in their ITU. But the last time I was in there was when they turned off Carol's life support machine ...

It's a small unit. The bed-spaces are cramped for an ITU. The bed-spaces are close together. Wherever I'd have been I would've been almost within reach of where Carol died, and the loss of that wonderful person would've overwhelmed me ... She'd been my business partner, and my best friend. She was 42 and died without warning - literally dropped to the floor of a bus after some post-work Christmas shopping. It took the paramedics 16 minutes to get her heart beating again, but she never regained consciousness and six days later they switched her life off at the wall ...

... And then there was Laura. A little younger than me. A wonderful, generous, shy, exceptionally talented, warm and loving friend. Desperately unhappy for years. She killed herself ...

I still miss her. I still think about her an awful lot. I still wish that I or others could have made her believe what a wonderfully special person she was. I understand her decision to take her own life, but that doesn't stop it from saddening me deeply and missing her tremendously.

... Not long after that there was Janine. Again a little younger than me, but not much. We'd originally met online - in an American chat room, but it turned out that we lived only one street away from each other so we met up and became friends. She wasn't living here when she died, but back with her parents. Life had been tough for her, but things were coming together and she was becoming more settled ... then she collapsed in her bedroom at her parents' house and died without warning. Previously undiagnosed sarcoidosis. Caused a sudden heart attack. It was New Year ...

... And this year both Emma and Andrea, fellow brittle asthmatics, both around about my age, both wonderfully lovely people always giving themselves to their friends. Always thinking of others despite their own limitations. Both very, very missed ... and of course Andrea died only five days after my own most recent fight for my life began ...

Facing your own mortality makes you think about the fragility of life and its temporary nature. It also makes you think about all the people who've given a bit of themselves to you, and who you've given a bit of yourself to, and then who've died. You keep the bit of them that they've given you, and you keep their memory, but the loss of that friend, that member of your family, is permanent and the grief goes on. Each death raises the memory of those before. Each person was special. Each of them have left a unique hole in my life.

Wednesday, 12 August 2009

Taking action

After my latest bad attack I decided that I need to come up with a plan of action for future bad attacks that quickly spiral out of control and make my brain addled. I think I mentioned this before. I wrote a letter to my GP explaining how quickly I deteriorated this time and how rapidly I lost the ability to make sensible decisions (telling him the random things I'd put in my bag when I staggered to the surgery just before being admitted to hospital). I explained about some of the difficulties I've had in A&E and RVI in the past in terms of treatment and incredulity at some of my allergies, and anxieties about needing an advocate with me when I can't speak due to breathlessness. I explained how I know that 'can't breathe' should equal 'dial 999', but that in my state of hypoxia/hypercapnia I wasn't able to make this judgement and that the previous difficulties I've had in A&E etc fed into this inability to make sensible decisions. I asked if it'd be possible to think through this problem together, because whenever I try to think about it on my own I get in a tangled twist, which I is probably the stress of the attacks getting to me and I get into the same state of mind as when I'm in the attacks. However, I wasn't 100% sure that the doc would think this was within his remit, or if he might think I should be able to think about it on my own, so I was clear that I didn't want to take an appointment slot unnecessarily if he didn't think it appropriate, but that I would appreciate some feedback. I dropped the letter off at the surgery on Tuesday last week (the day after I got out of hospital) and received a reply through the post on Friday saying that he did think it would be appropriate to discuss these issues together, although he wasn't completely sure what the answer was as some of the difficulty seems to be my reluctance to go anywhere but ward 29 at Freeman, which of course isn't always possible. I had an appointment with the GP on Monday morning.

The appointment was incredibly useful, and I also think it was helpful to have written the letter and 'given' it to him in advance as it meant that he'd had a chance to think about it and discuss it with some of his colleagues too. It was useful too to have explained about the hypoxic/hypercapnic confusion, which he described as my 'being away with the fairies' ;oP and one of the ideas he suggested was coming up with some kind of repeatable mental challenge that friends can do with me (through text if necessary) to assess my level of 'away with fairies-ness'. There's one used by medics which involves repeated subtractions of seven from a hundred, and you have to get something like six or seven in a row right or you're deemed confused. Provisionally this test will do, but I'm trying to come up with something else as maths isn't my strong point at the best of times ;oP It's a starting point though and it might help. The point is that if I can't 'pass' the mental challenge - whatever it turns out to be - then the person doing it can take charge of the situation and make the decision for me to get help/call an ambulance.

The second thing the doc suggested was to see if the ward/hospital could supply me with a pulse oximeter so that I have a clear clinical marker too. The problem with this is that sometimes I can be hypercapnic yet still have acceptable oxygen levels (which is a bit odd, but then this is me ;oP ) so it may not be as useful as it first seems, and could potentially give a false sense of security. The other difficulty I wonder about is funding. Even the cheapest pulse oximeters are £200-300, and I know that the ward have had to fund buying most of the ones they have themselves, so I don't think it likely that they'd be able to supply me with one. However, my GP is going to write to my consultant - Dr H - so he may put the pulse oximeter suggestion to him in that.

The primary reason my GP is going to write to Dr H though is for something of huge potential use - arranging a meeting for me with one of the A&E consultants. Now I don't yet know if this meeting would be just by myself with the A&E doc or if Dr H or my GP would be there as well, but the purpose of the meeting would be to discuss past difficulties I've had in the department and how these have eroded some of my trust in some of the medics; to discuss my treatment protocol and get it put onto the computer system if possible; and to ensure that something similar happens regarding my allergies, highlighting that I can't have and should never be given magnesium sulphate (often given to people in A&E having a severe asthma attack). I expect it to take quite some time to organise this kind of meeting, but I think it has potential to be extremely useful and could help alleviate some of my anxieties. I made it clear both in my letter and in my GP appointment that all in A&E were fantastic this time, but all the same, because of some previous experiences, I never assume that it's always going to be this way, so I'm sure the meeting will be helpful when it happens.

I've mentioned before that I carry with me a laminated copy of a letter from Dr H addressed to any A&E doctor 'strongly suggesting' the course of treatment to take when I present with my asthma. I also carry a letter from Ward 29's Charge Nurse saying that I'm usually under their care and they're always happy to take me as soon as I don't need ITU/HDU care, but can they please be informed of my admission as soon as possible so that arrangements can get underway, especially as I'm MRSA positive so need a side room. Anyway, I'd mentioned both these letters in my own to the GP, not really realising that they weren't aware of them, and in my GP appointment he asked if he could see them. Not a problem at all, and he was impressed with them and their usefulness. He asked if they could take copies of them, and scan them into my records, not just because they're useful for them to have, but also so that they can print them off if ever they need to give them to paramedics etc. It wasn't something I'd thought of, but thought it a good idea.

We talked a little about my most recent attack and presentation at the surgery. I said how I was so away with the fairies that part of me was half expecting whichever doctor I saw to send me home. Dr R (GP) looked shocked, surprised and exclaimed, 'Really?! As soon as you phoned everyone scrambled into action and when you arrived we all jumped out of our seats!' He said that they know when I phone up/call in saying that I need to see a doctor that I'm not time-wasting or exaggerating, but one of the few patients who genuinely do need to see a doctor. They know that I don't and wouldn't abuse the system, and that whenever my name appears on any of their lists for the day it flags up. Actually, at this point in the conversation Dr R said that when my name appears on the list they get scared, and he threw his hands up with an expression of 'Oh no!' ;o) I'm not sure how great it is to have this effect on one's GP ... on all the GPs, nurses and receptionists in the GP practice ... LOL

All in all it was a very useful appointment, and I came away feeling very positive about it. It was good to be able to share a little more about what it's like actually being in the throes of an asthma attack and some of the fears that run alongside the event itself as well as anxieties about potential treatment errors in the emergency situation. Aside from the mental challenge (which I've yet to fully decide upon and then discuss with some friends who may be able to help do the 'assessment' in future attacks) nothing has been firmly put into place, but there is a plan and things are being thought about and implemented. It may very well be that I find myself in A&E again before the meeting with an A&E consultant is organised, but at least I know that things are in the pipeline, and I know too that my GP is now fully aware of my anxieties and previous difficulties. I also know that my GP is more aware of how confused and unable to make sensible and rational judgements I become, and how quickly this can occur.

There's very little I can do to help my health - nothing more than I already do, so far as I'm aware - so it feels good to have been pro-active in this instance. I knew I had to do something as my lack of judgement, and the influence of previous negative experience in A&E on decisions I made in my state of confusion, so nearly cost me my life this time.

Saturday, 8 August 2009

I made it!

I'm home!!! Yippeeee! (I actually got home on Monday as planned, but just haven’t got around to updating my blog – sorry). Although it was a bit like BA and not all my bags arrived back with me :o( I had job's-worth ambulance driver who came up to the ward with a wheelchair and when told that I had my own got stroppy and sulked to the nurse, 'I'll take this all the way back downstairs then, shall I?' When he came back up he walked into my room, looked at my 6 bags and grumped, 'I can't take all them. Which one do you want to take? I can take one bag of clothes and one bag of medications.' Now I've been going backwards and forwards to this ward for 14 years and never have I come across this 'health and safety rule that's been in force for ten years.' Hmmm *narrows eyes with suspicion of porkies being told* I asked how I was supposed to get my bags home then if he wouldn't take them. 'Get someone to come and pick them up.' Now, the flaw in this is if I had someone to come and pick up my bags then I'd have someone to come and pick up me too. Grumpy Old Sod (GOS) didn't see this logic and insisted that he couldn't take my bags and wouldn't take my bags. I was getting a bit sick of his grumpiness, after all I hadn't done anything wrong, so I asked him if he could be less grumpy and a bit more pleasant. He stropped that he wasn't being grumpy, and my reply was, 'You may not be meaning to be, but that's how you're coming across. I'd really appreciate it if you could be less aggressive.' I don't think he was used to be spoken to quite so directly, because he seemed slightly taken aback. He did continue to say that I'd have to choose just one bag to take with me, but he was a little less obstreperous :o) I decided that I'd have to take my laptop home with me, because it wouldn't be very sensible to leave that in the hospital, even though the rest of my stuff was going to be put in the Charge Nurse's office for the time being. So I took that and I 1 bag (containing 4 smaller bags, but I didn’t tell him that ;oP ) of medication ... and through the art of manipulation I managed to persuade him to allow me one other bag. I kept saying, 'Oh, that bag's got my phone in it. I'll just take my phone out.' 'Oh, it's got my diary in it too. I'll get that from it.' 'Hang on, my keys are in there and so's my purse. I need them.' 'My reading glasses - they're in there as well.' I was ending up with the contents of my rucksack being balanced on my knee, but no bag to hold them in, so he relented and I was allowed to bring the bag too :oD However, the rest of my stuff had to stay at the hospital :o( I had to try to get a friend to get them for me after they’d finished work. And the really annoying thing? When we got downstairs I had a whole Patient Transport Ambulance with about 10 seats and loads of floor space all to myself, so it's not as though we were exactly pushed for space! Grrrr. GOS!

However, I was cheery :o) I’d got home. I had Psychokitty (currently Velcro Psychokitty) purring in my ear. I had my laptop so I could communicate with all of my online friends. I had the satisfaction of knowing that I manipulated a GOS *cackle*

I’ve been enjoying being at home, although it took some time to get the remnants of the ward noise out of my head – you know how it is when you’ve spent a while in a constantly active environment: it can take a while to get used to peace and quiet again. The trauma of the early crisis is raising its ugly head a little more frequently than it was, but I’ve been pushing it away as much as possible while I’ve been getting used to being home. I know I’m going to have to face it head-on soon or it’ll cause more problems in the end ... I don’t want to though.

One of the big distractions I’ve had since coming home has been the wait for my OU course results. They were due out by 7th and in the past results have always come out at least a week before the due date so I’d been anticipating them since before I left hospital. I spent rather a lot of last week obsessively checking my OU student homepage and course results page, and then taking part in a collective panic in the online OU community with others waiting for the same course results. Anyway, we finally got the results through on Thursday (6th) ... I got a distinction (a first)!!! I’m sooooo pleased, and really rather surprised given the hospital admissions I’ve had throughout the course and the fact that I had pneumonia during the whole of the independent study period that was for writing our examinable piece of work. I got 86% for the examinable piece! Yes, it has to be said that I’m surprised and rather proud of myself :oD I now have one more level 3 course to do – Children’s Literature, which I begin in October – and then the level 1 humanities foundation course. After that I’ll have my degree! I know it seems a bit odd to finish my degree with a foundation course, but I need it to get the named degree that I want (BA (hons) Hums Eng Lit), and so far the only foundation course I’ve done is the science one, although I have done other short level 1 courses. Level 1 courses only have a pass or fail, rather than a division of class for a pass, so all I’ll have to do is pass that course and it won’t affect my overall classification of degree. In fact I’ll know what my degree classification is going to be by the end of the Children’s Literature course, but I think that I’m heading for a first unless I severely screw up in Kid’s Lit, because to date I’ve had firsts in all the level 2 and 3 courses that I’ve done :o) Still, there aren’t any guarantees so I’m not counting my chickens just yet. For now though I’m enjoying my current success ... and still not quite believing it ;o)

Sunday, 2 August 2009

Almost there

And the good news is that I should be going home tomorrow :oD There's always a fair bit of waiting around on going home day, first of all for the doc to come round and confirm that the escape tunnel is complete, then for pharmacy to send up meds to take home (usually at least one large carrier bag full), and then for the ambulance to come to take me home. I used to get frustrated with all the waiting around, but I'm used to it these days and don't expect anything to happen quickly - there's a reason we're called patients! Anyway, after three weeks in hospital another few hours doesn't make a lot of difference, especially if you have one or two things to occupy yourself. My TV payment will run out around 2pm I think, but I have my book, my cross-stitch, the 'puter and sudoku so I'll be fine ... and of course there's always sleeping :o)

This has been a long and hard admission. In some ways the length of time hasn't seemed that bad, I think because I was so poorly for the first part of it that I didn't really notice, and it's only in the last several days that I've begun to feel like more like my usual self. There is no doubt, though, that it has certainly been hard ... for many reasons ... and sometimes it's felt as though my head might explode. It may well explode yet, but at least when it does it'll be when I'm at home and the mess will be private. Every so often little bits of the mess have leaked out, but without the space and true privacy (despite being in a room of my own) it's hard to let go of it. I don't want to have to deal with the head-mess - I don't want to feel it - but I know that it's there and it will come, and I'll crumple into a bit of a gibbering heap while I deal with the vast array of emotions. I know too that I will come through it, but it's not always easy to feel that when I'm in the middle of it so perhaps, if I write about it on here, one or two of you could remind me that I'll come through the other side and it'll become just another near-death experience.