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

Today is the tomorrow that you worried about yesterday.

Wednesday, 31 December 2008

Questions answered

Okay, having posed the questions, and it now being New Year's Eve, it's time for me to answer my own questions.

1. What has been your biggest achievement this year? Getting a first in my English Lit course (and, so my tutor told me, getting the highest mark!)
2. What made you laugh most this year? This is hard. I know that I've laughed lots this year, and I can remember one or two fits of giggles, but I can't remember what it was about.
3. What has been your favourite/most listened to piece of music this year? I've listened to Scot Joplin a lot.
4. What was your best holiday this year? I didn't have anything much of a holiday this year. I guess I'd say that my time at the Edinburgh Book Festival was the best time away, though it wasn't a holiday as I studied relentlessly.
5. What new skill, if any, have you acquired this year? Erm ... the beginnings of play writing.
6. What's your happiest/fondest memory of this year? Probably of building sand castles for my nephew (O) to prod and then knock down when we were on the beach at Bamburgh in July.
7. What's the best book you've read this year? Excluding those that I read for my course, I'd say Alan Bennett's The Uncommon Reader has probably been the best.
8. If you could spend next year as a film character, who would that be? Oh, what's her name in Much Ado About Nothing? Is it Beatrice? Anyway, it'd be her in the Brannagh version so that I could spend a year with Kenneth Brannagh, Denzyl Washington and Keanu Reeves all in leather trousers! ;oP
9. What new hobby did you take up/old hobby did you reinstate this year? Earlier in the year I reinstated swimming, but it only lasted a couple of months and then got interrupted by hospital. Other than that I guess I've done more with my photography this year than previously.
10. What one thing would you really like to do next year? Pass my current OU course in Advanced Creative Writing.
11. What has been your best discovery of this year? That I'm actually pretty good at literary analysis.
12. What news story of this year has had the biggest impact on you/do you most remember? A serious one has been the attacks in Mumbai. Truly awful. At the other end of the spectrum is one that I heard at the beginning of the year on Radio 4 (at least I'm pretty sure it was this year). A squirrel chewed its way through an electricity wire and caused a blackout in the whole of Devon.
13. What's the best film you've seen this year? (can be at the cinema or DVD etc) I haven't been to the cinema much this year. I did watch a fantastic, though harrowing, film on telly last night - The Magdalene Sisters. If you haven't seen it, it's well worth it.
14. What was your best buy this year? Erm ... maybe my new TV (32" flat screen), or the 30mm macro lens I bought for my camera.
15. What has been your best day out this year? Quite possibly the day at Bamburgh Beach with my nephew, brother, sister-in-law, dad, step-mum, and various friends of dad and step-mum. It was blissfully warm, a lovely family time, Dad looked well and was enjoying himself, O was really happy and cheery and some of us went swimming in the sea!
16. Is there anywhere you'd like to visit next year? Locally, I'd like to go to Allen Banks. A little further afield, I desperately want to go down to London and meet Nephew number 2. Further still, I'd like to go abroad for a holiday ... perhaps to France with my bro, s-i-l, 2 nephews and whoever else is at s-i-l's parents' French house (yes, they have a second home in France). I'm told I have an invite.
17. Name one thing you did this year that you'd like to do again. Hmm ... not sure ... survive, I guess. If I have to be less general, I guess I'd opt for being well enough to get back to supervised exercise.
18. Who gave you the best advice this year? Probably my previous pdoc, Dr M, who advised me to tell somebody something about somebody else even though it went against their wishes at the time. It was necessary for my own well-being. The person I was telling has since been told by the person who it was about. Gosh, that's all very confusing isn't it? I'm having to be a little bit more cryptic than usual to maintain a certain amount of confidentiality.
19. What new skill would you like to acquire next year? Breathing! Failing that, something fun that I haven't yet thought of.
20. What was your favourite TV/radio programme of this year? I've really enjoyed the recent series of Survivors on BBC 1. I love some of the radio comedies on Radio 4 though - Just a Minute; I'm Sorry, I Haven't a Clue; some others that I can't remember the names of at the moment, but I know that I've enjoyed.

Right then, that's me done for the year :o) Anyone got any more questions they want to add to the list? Any more takers for answering any of them? Go on, it's fun!

Have fun tonight, everyone, and I'll see you all next year!

Saturday, 27 December 2008

Review of the year

Last year I devised a set of questions for me and my friends to ask each other on New Year's Eve, and I also did them with my mum. Mum kept a copy and we found it the other day in one of the carol music books so we spent some time yesterday evening going through the questions. I thought that perhaps you might like to think about them too so here they are:

1. What has been your biggest achievement this year?
2. What made you laugh most this year?
3. What has been your favourite/most listened to piece of music this year?
4. What was your best holiday this year?
5. What new skill, if any, have you acquired this year?
6. What's your happiest/fondest memory of this year?
7. What's the best book you've read this year?
8. If you could spend next year as a film character, who would that be?
9. What new hobby did you take up/old hobby did you reinstate this year?
10. What one thing would you really like to do next year?
11. What has been your best discovery of this year?
12. What news story of this year has had the biggest impact on you/do you most remember?
13. What's the best film you've seen this year? (can be at the cinema or DVD etc)
14. What was your best buy this year?
15. What has been your best day out this year?
16. Is there anywhere you'd like to visit next year?
17. Name one thing you did this year that you'd like to do again.
18. Who gave you the best advice this year?
19. What new skill would you like to acquire next year?
20. What was your favourite TV/radio programme of this year?

When I came up with these questions I tried to focus on the positive aspects of life, although I think they also make you consider the other side of things too. One of the things they've done for me is make me think about which areas in the good bits of life I need to make more of an effort with. For example, I had some good days out this year, and I think I can isolate one that I can say was my best of the year (Q.15), but I haven't had as many days out this year as I did last, so maybe next year I need to make sure I have more. The other one I had real difficulty with was Q.4 - best holiday of the year. I've had a couple of days away here and there, but no real holiday in 2008. That is something I definitely need to change for 2009.

I'd really like to hear some of your answers to some of these questions, so please do share some in the comments section :o) In the meantime, have fun thinking about and answering them.

Pond life

I'm still at Mum's at the moment - here until Tuesday. She and J (Step-dad) live near one of the parks in the suburbs of Edinburgh and this afternoon J and I went for a short wander by the pond in the park. It wasn't too chilly and it was dry so there quite a number of people out and about, including plenty of children riding their shiny new bikes that I'm sure they will have got as Christmas presents. There were several families of three generations blowing away the cobwebs, and it was lovely to watch the different interactions of the family members of different generations.

Most of the avian life on and near the pond consisted of gulls, mainly black-headed gulls that had lost the blackness on their heads for the winter months. This caused J and I a little confusion at first, and we started pondering the liklihood of them actually being kittiwakes, but ultimately decided this was unlikely and then checked out the non-black-headed black-headed gull theory in a book when we got back. We were right. Amongst the gulls were a a few pairs of ducks, and a couple of swans looking very majestic and rather expectant as we approached, but alas, we had no bread with us. They looked well fed anyway, and I'm sure that living in a suburban park they don't do at all badly for food. In fact, several of the families that were around included children throwing bread (and probably left over Christmas dinner) to the ducks and swans whilst trying to scare away the gulls. Towards one end of the pond was a small cluster of moorhens, which I always think look so out of proportion when they get out of the water. Their bodies are small and dainty, and their little red bills are somewhat endearing, but then they have whacking great, gangly legs and spindly feet that have a twiggy look about them. Still, for some reason I prefer moorhens to coots, although they're very similar.

On our short meander around the pond we came across a very friendly robin that sat in the branches of a low, leafless bush by the path. It twittered and sang, showed us its glowing red breast and obligingly posed for me while I took a lot of photos. Unfortunately it also decided to make sudden movements of its head at precisely the moment I pressed the shutter button on the camera, so a good number of the photos are rather blurred. I'll have a check through them though and maybe post one or two of the unblurred ones on here. I'll also check out the photos I took of the herron that was perched on a high branch of a tree by the pond. We spotted it from the far side of the pond, but had to wait until we were on the same side as it before I could get a photo. This was fine as it seemed to be asleep and all wrapped up in its wings when we first saw it, but had woken up and was preening itself by the time we made it round to where it was. Of course I've seen herrons many times before, and I've seen them nesting too, but I always find it quite surprising to see a bird of that size nesting in a tree, especially one that I more usually expect to see wading amongst long grass along the side of a lake.

J and I didn't stay out for long, only doing one slow circuit of the pond, because I'm not actually feeling too grand. I'm okay, and I don't have 'flu like Mum has had (I had the 'flu vaccine a couple of months ago), but I think my lungs may be brewing some pond life of their own - more the sludgy, green variety than the avian variety though. I have woken on the past two mornings with a distinct rattle in my chest that I haven't been able to shift at all easily. Nebs have helped a little, but everything feels like it's tightening up and my lungs have a certain heaviness about them. In a fit of optimism when packing to come up here I didn't put my peak flow metre in my luggage, so today J went to the nearest Boots to buy one from the pharmacy counter. I'd just had a nebuliser when J came back from the chemist, but I did a PEF anyway to give me some marker of where I was up to. Post-neb late this afternoon my PEF was 200, which is sort of acceptable for me when I'm setting out on a downward spiral (which I think this probably is). Okay, it's not great, but it's liveable with. I did a pre-neb PEF a little later on and it had dipped to 120. Not great. The nebuliser I had helped a bit, but that rattle is back in my lungs and I'm beginning to wonder how long I've got until I splat as post-neb I only got back as far as 170.

These days Mum and J rarely see me at the outset of a downward spiral so Mum is fussing somewhat and J has been checking out online where the best place to go is over the weekend if I need to see a doc. My guess is the local hospital, which is pretty close, but it's maybe a bit of a difficult call as the other hospital in the city (Edinburgh Western General) has a brittle asthma unit, so they'd be well up on how to treat it. I, on the other hand, am trying to allay their fears that although I'm dipping, I'm not in immediate need of medical assistance, and I'm really hoping not to have to test out the Edinburgh emergency services. I'm sure they're great ... I'd just rather not have to find out first hand. Obviously I'll use them if I need to, and if the pond life develops as I suspect it is then I'll see a doc for antibiotics sooner rather than later, but I'd much prefer to have a medical-free Christmas break away, get home as planned on Tuesday, and not immediately find myself making use of the health services back in Newcastle.

And with that I shall leave you for now while I go and nebulise again.

Tuesday, 23 December 2008

Phew! I made it!

Phew! I've made it to Christmas! I made the deadline for my latest assignment! I've made it to Edinburgh! Hurray!

I'm sure you're all hectically busy, as I have been, which is why, yet again, I have neglected you until now. Now that I'm up at Mum's though I can feel the tension finally slipping away, and I'm starting to relax into Christmas.

I spent most of the past week and a bit writing an assignment that was due on by Friday just gone (a stupid time to have an assignment in, if you ask me). Luckily, and quite miraculously, I managed to get it done and sent off into the ether for marking by 5.30pm on Thursday :o) The assignment entailed dramatising the short story I'd written for the previous assignment, for radio, stage or film. I'd originally thought I'd do it for film, but then played around with the idea of radio before finally settling on stage. I was in my usual state of decisiveness ;o) I can't remember if I told you about my first assignment or not, so here's the (very) basic storyline:

Bill and Marion are the parents of a young soldier, Jim, who is fighting out in the Iraq war. They receive a visit from a Casualty Notification Officer telling them of their son's death. On the day of Jim's funeral they get a letter from Jim that he wrote and sent just before he was killed.

As I say, that is the story on a very basic level. The play is a little different in that it deals solely with the morning of the funeral, and rather than concentrating mostly on Marion (as the short story does), it tells more of the story and reactions of all the characters. So there's Bill's coping/not coping by keeping busy and getting tied up in practicalities, but then giving way to his real feelings when Captain John Baites (the CNO) gives him the letter. By the way, the play opens with the arrival of the letter, and Jim's friend, Micky, who's already in the house picking it up off the doormat. He doesn't want to upset B and M so keeps hold of it until the CNO arrives, which is how come he gives it to Bill. There's a little in the play about how the CNO comes to be doing the job and the complexities of it when he didn't know Jim ... Um, then there's a bit of Micky's reaction, and also his relationship to the family as a life-long friend of Jim. And of course, there's Marion's grief and then her reaction to the letter - she goes into a brief state of disbelief that Jim is actually dead seeing as he's sent a letter.

It's not cheery, is it? Not very festive. Maybe that, in addition to having the pressure taken off with having met the assignment deadline, is partly why I'm now able to relax. It's been a slog, but I'm quite pleased with the final thing ... though I reserve all judgement until I get the mark through. I still have some work to do over Christmas, but I'm determined to take a couple of guilt-free study-free days off, and maybe when I come back to it I'll be a little refreshed ... or a little more stuffed with Christmas goodies at least ;oP
As I say, I came up to Mum's in Edinburgh yesterday. It's great to be up here, but Mum's not well. She's got 'flu :o( She's a little better than she was last week, but still not well so I think Christmas is going to be a relatively quiet affair. Luckily (for me) I had the 'flu vaccine back in October so I should be okay, but my lungs were quite tight this morning, requiring a double dose of nebulised salbutamol, and not too happy this afternoon either. They've been better this evening than they were earlier in the day, but I'm thinking that I might have to be careful in the next day or so. I have no desire to sample the local hospital, even though it's got a fairly good reputation!

Speaking of avoiding hospital, I had a bit of a close call on Sunday evening. At my church the 'general holy mob' (most of the congregation ;oP ) get normal bread (but consecrated) at communion. I can't have shop-bought bread, because of my allergies, and I can't have the regular host wafers either. I can, though, have the gluten-free wafers, although it's not gluten that's the problem for me, it's the sulphur dioxide/sulphites they use to make the flour used in the regular wafers white. Anyway, on Sunday evening we were having a quiet, reflective, Christmas vigil service with communion, which was all very lovely and going smoothly ... until communion. For a change, the communion bread and wine were being passed around by the congregation to each other, but M (the vicar) had told me that he had mine separate and that he'd give it to me himself. Great. This would have been absolutely fine if only the wafer I was given had not been either the wrong sort or a different brand. Whatever it was, it was different and I very quickly knew it. I managed to avoid swallowing any of it, and while I still had it in my mouth asked M if it was the gluten-free type. He looked a bit worried, then said he thought it was, but suddenly wasn't sure. I got up and we went to the back of church (actually it was about half way up, but it was beyond the horseshoe of pews where the service was taking place) where I quickly spat out the consecrated God biscuit. I'm not sure what God would make of that, or the fact that it then went in the bin, but I didn't have a lot of choice, because already my tongue and lips were fizzing, my mouth was itchy, my throat was itchy and my eyes were beginning to burn. My tongue swelled a bit, and my eyes continued to burn and itch and everything in and around my lips was itchy and sore for quite sometime, but luckily it didn't progress into anaphylaxis. I think it might have done if I'd actually swallowed any of it, and/or if I hadn't immediately taken a double dose of two different antihistamines (as prescribed by my immunologist, not just because I thought it was a good idea!).

After exposure to, or ingestion of, an allergenic substance I have up to four hours in which I could have an anaphylactic reaction. Usually, the sooner the reaction begins the more severe it is (and this was pretty damn immediate), but it doesn't always happen that way. It also doesn't always happen that because you stave it off once that it won't come back when the level of antihistamine subsides. It can be an anxious time, but all I can do is wait ... which was apt on Sunday as the sermon was all about waiting. Anyway, I'd put the deadly God biscuit in my mouth around 8pm so I had until to get to about midnight before I could relax in knowledge of relative safety. Poor M was so worried, and I think felt quite guilty (though he has no reason to be, because these things will sometimes happen), and he asked me to text him at midnight to let him know that I was still alive, breathing and had a generally functioning body. Several of my friends suggested I have someone sit with me until midnight, which may have been sensible, but I thought I'd be okay (though they could've been fatal last words) and it also felt a bit much to put onto others ... although I'll probably get shouted at by them for saying that if/when they read this. As it happens I was okay. I felt a bit crappy, and I was very itchy all around my mouth, lips and throat, but the swelling of my tongue went down, and my eyes stopped burning so I got on with distracting myself from the other miserable symptoms by slowly packing for my trip up here and also wasting time on Facebook. As expected, I felt lousy in the morning - I always do after an allergic reaction - so my plans to head off for Edinburgh by 1pm at the latest were delayed until 3pm, by which time I was much more able to function. By the time I got here I was fine, but exhausted, which is unusual for me on a 'normal' drive north, but not after a near-miss allergic response. Needless to say, I had a very early night last night and slept like a log. Maybe this morning's lung grumpiness was connected to the allergy, though I doubt it as it was a bit too long after the event.

Anyway, I made it! I survived and catastrophe was avoided. Yay! Phew!

Friday, 12 December 2008


I've neglected you again - sorry. I'm back from Edinburgh now though and feeling somewhat refreshed for it. It's also only another 2 weeks until I'm back up there for Christmas so I have that to look forward to and to keep me going :o) It was good to get away even if it wasn't the trip to London that I'd originally planned, and it was good to do very little while I was away too. I think I just needed a change of scenery and a bit of TLC. I'm still hugely disappointed about the methotrexate decision, but I don't crumple every time I think about it now, though I have to say that I have noticed a difference in how my lungs have felt over the last couple of weeks ... it's kind of like they're smaller. I remember now that when I first started taking the methotrexate I felt as though my lungs were enormous, and that I could take a bigger breath. With the withdrawl of the med I'm losing that feeling of space to breathe. I know that some of the drug will still be in my stystem, and in fact it won't have fully worked its way out for upto three months, so the fact that I can already feel a difference after only almost three weeks since my last dose doesn't really bode well, in my opinion. It's tough, but I have to get my head around the finality of the decision, accept it and move on, otherwise I'll end up getting depressed, and it's not worth that. Nothing is worth depression.

Speaking of depression, before I went up to Edinburgh I was slightly concerned that I was edging towards depression, though I didn't want to admit it 'out loud' in case it made it reality (the weird logic of the stressed mind!). Now that I've had a bit of a break and had a rest I feel as though I've got much more of my old spark back. I was low and miserable before my trip, but I managed to avoid a deep slump, which I'm proud of, because a few years ago I'd have been so scared by the upset I was feeling that I may have actually convinced myself into a depression ... if that makes sense. None of the things that were causing the upset have changed, but I've given myself a bit of time to process some of them, I've even allowed myself to be miserable and tearful when I've needed to be, and I've come through the other side. My friends have been around to support me, pray for me, give me hugs, and all those other things that friends do to let you know you matter, they care, and want to help. They help just by being them :o)

So I have returned from Edinburgh, the feeling of ultra-limited lung capacity has returned, but despite the latter my inner sparkle is returning and that is good. The other thing that has been returned is my exam result. I got it earlier this week. I got a first!!! I got 84% in the exam and an overall course mark of 88% !!! This is flipping amazing! :oO <--- that's me being amazed! I spent quite a bit of time in hospital during this course; wrote at least one of my assignments whilst in hospital, on oxygen, still attached to the aminophylline infusion; only had three weeks to revise for the exam because of being in hospital, and for some of that three weeks I was still trying to recuperate and feeling quite unwell; and you may remember that I had the invigilator from hell who kept talking to me throughout the exam. Various other significant things have happened during the course that have impacted upon my studies too, so it can be said with legitimacy that this has certainly been a difficult year and study hasn't been easy. This is why I'm so amazed at my result ... and utterly delighted :oD

Sunday, 7 December 2008


Sorry I've been a bit quiet of late and left you on a rather miserable note. I've needed a bit of time to wallow in the fed-upness and just let myself give in to the disappointment, particularly of the methotrexate situation. I'm beginning to come out of the fed-upness now and think that one thing that has helped is coming up to Edinburgh for a few days for some parental TLC. I was actually supposed to be going down to London to stay with my brother and his family, and to meet my 'new' nephew (you may remember he was born in September, but I still haven't had a chance to meet him), but they're all full of colds. Again, because of my lungs, it's not sensible to put myself in the middle of lurgy-ridden places as I pick bugs up so easily and what is a cold to most people usually turns into a lung crisis for me. I was hugely disappointed, and even more fed up with my lungs, not to get to London, but decided that I needed to get away for a bit anyway so have come up to my mother's for a few days. I haven't done very much while I've been here, but it's good to be able to rest and be looked after a little ... and also to play the baby grand piano that she bought a couple of weeks ago almost on the spur of the moment! It's quite an impulse buy, don't you think? But I have to say that it's rather wonderful and beautiful to play so I have been playing it a lot :o)

Today I really must get down to some study. I'm behind again, have an assignment (a dramatisation based on my last assignment) to get done by 19th, and I'm panicking a little now. Mind you, the general panic of study isn't helped by waiting for my exam results from the English Lit course, which are due any day now - Friday by the latest. I'm finding it really hard to settle down to work while I'm waiting on these results, which is silly really as there's absolutely nothing I can do about them now, and also I'm fairly certain that I've passed, it's just what level of pass I'll get. Eek! So yes, today I need to do some study. This should actually be helped by being at Mum's and on the receiving end of TLC asI don't have to do anything else much. I always feel like I should help with the cooking etc, but Mum gets a bit hassled if she does concede to let anyone help and actually prefers just to get on with it herself. At least she enjoys it :o)

Hmm, well I suppose I should go and get on with that study I've been talking about. You know, I could have a degree in procrastination ... if only I get around to it ;o)

Monday, 1 December 2008

Nothing new

In the past week I have had three hospital appointments, a trip to the walk-in centre, and I have a doctor's appointment this afternoon. Each appointment has been one of disappointment.

Last Tuesday I went to see the psychiatrist, which was the least disappointing/traumatic of my medical visits. Dr G is okay, but he often has his own agenda, which isn't actually all that great for a psychiatrist, and the result of this is that I have to try to cram in what I want to say whenever I get a chance. A lot of what I wanted to say last week, and on many of my recent appointments with Dr G, has been related to my asthma and more specifically my most recent admission. The problem is that Dr G doesn't seem to know what to say to me about any of this, and to be honest I don't expect him to say anything, just listen, which as I've already said he's not that great at. He wants to help. He wants to say something that'll make me feel better. He wants to be able to do something. He offers me medication, but there is no point in taking more antidepressants largely because I'm not depressed. Yes I've been stressed and been a bit traumatised, but I'm not depressed. He agrees and I don't take a prescription. There is nothing Dr G can do or say. The appointment finishes and I go home.

On Friday I had an appointment with the opthalmologist and optician at one of the hospitals. This is in part to check my coloured contact lens that artificially contracts my left pupil as it doesn't do it on its own. I have a condition in my left eye called Holmes Adies Pupil which, amongst other things, means that the pupil doesn't contract so I get dazzled by light, which can be uncomfortable. I know that there's nothing that can be done for this, and it's not life threatening in any way. In fact all the literature says that it is of little consequence, but this is a medical view when in reality the discomfort of bright light isn't nice and the fact that the lens in my eye doesn't accommodate is frustrating, because it interferes with my vision. My left eye doesn't focus well so things are often very blurred in that eye. Over time my brain got somewhat used to this and my right eye compensates to some extent. However, my vision is further compromised by cataracts that began to develop a couple of years ago. They're only small at the moment, but they're right in the centre of the lenses in my eyes, and the one in my right eye is bigger than the one in the left. I've written before about the prospects of this for me, but to say again, the opthalmologist is extremely reluctant to operate at any time to remove the cataracts because of my lungs. Most cataracts are removed under local anaesthetic, but apparently there's still a risk that a local anaesthetic would affect my lungs, so the consequence is that they won't do anything and I have the prospect of blindness ahead of me unless I can convince me asthma consultant to speak to the opthalmologist and convince her to remove the cataracts eventually.

Now on Friday afternoon I went to the local walk-in centre for the very silly thing of an infected toe. I hadn't planned on going there and was going to see if I could just sort things out by regularly soaking my foot in hot, salty water, but as Friday progressed my whole toe started to ache so I thought I'd better get it seen to, especially as I'm MRSA positive. So I went to the walk-in/hobble-in centre and sure enough was told that it's infected and I needed antibiotics, but as I'm on methotrexate the nurse practitioners who run the centre aren't licenced to prescribe antibiotics for me. I came away with a toe dressing, the phone number of the urgent doctors service in case it got worse over the weekend, the suggestion that I see my own GP on Monday and the news that there's nothing the walk-in centre can do for me. Oh great.

This morning I have been to see my asthma consultant, which is always the same - a chat, a check to see that things aren't deteriorating (too much) and confirmation that nothing can be done to help. Today was harder to take than previous appointments with Dr H though as he's decided to take me off methotrexate. There are some serious potential side-effects, such as lung fibrosis, liver failure and kidney failure. Thankfully I haven't suffered any of these so far, but the risk is on-going, my consultant has been concerned about the potential of them, and he has now decided that the risks aren't out-weighed by the limited benefit I was getting from the drug. It's not altogether unexpected, but I have been so upset today. I was put on methotrexate as a last hope of anything helping and now that hope has been taken from me. There is nothing else left to try, and again Dr H has said that we have to wait for science to catch up with my disease and try to hope that I live that long. You know you've hit a brick wall when all the consultant can offer is a prescription of hope, but at the same time removes the medication that supplied the hope.

Wednesday, 26 November 2008

Not 100%

For once it's not my lungs that are making me feel under the weather, though I'm not 100 per cent. There are some nasty bugs going round at the moment, one of which is a sickness bug. I'm not sure whether I'm coming down with this or if it's just coincidence, but for the past couple of days I've been feeling rather nauseous, and today I've had a headache and a bit of a sore throat. It's nothing major, but the risk is that I do end up being sick, in which case I won't be able to keep my meds down and my lungs will go off on a strop. Because I have IBS I take an anti-sickness med everyday anyway (not actually for nausea/sickness, but because it speeds up my insides), so yesterday afternoon I doubled the dose to the max allowed in the hope of keeping things under control. I have to keep an eye on things, not only because of the potential consequences of sickness and my asthma, but also because there's the very slight possibility that this is being caused by the methotrexate I take for the asthma. I'm not overly concerned about this possibility because I know there are bugs going round and I know several who've had it, but I need to be a little wary. If the symptoms are down to the methotrexate then the chances are that I'll have to come off it as it would be indicative of more serious side-effects.

Methotrexate has been a last-ditch attempt to do anything for my asthma as there simply aren't any other options until science catches up with my disease, as my consultant put it. There are mixed reports of its efficacy, but when I first started taking it I did seem able to reduce my dose of oral steroids - prednisolone - that had been at 60mg or more for over a year. However, over the past few months I've had several bad attacks, which isn't any different from previously really, but I haven't been able to reduce the pred again after the post-attack increases. I'd managed to get the steroids down to 30mg at one point, albeit fairly briefly, which was huge progress, but the dose has gradually crept back up to 60mg, although I'm slowly trying to tickle it down a bit again. Anyway, the upshot of this is that my consultant is now not sure that the risks of taking methotrexate are balanced by the benefits and is questioning whether I should stay on it. I still want to stay on it, but I can see his point ... I guess I don't want to give up on the hope of its usefulness though. There simply isn't anything else that can be offered to help my asthma so letting go of this one hope is a very big thing, and I don't think I'm ready to do that yet so long as the methotrexate isn't doing me any harm.

I'm hoping that this slight off-colourness is either bug related or preferably just exhaustion as the fatigue after the last asthma attack hasn't abated yet. It's taking a very long time for this tiredness and lethargy to lift, and I'm a bit fed up with it ... I'm also a little uncertain as to why it's taking so long to pick up. Here's hoping it will lift and that all the other off-colourness symptoms disappear very quickly.

Monday, 24 November 2008

Picking up

I was quite miserable in my last post, as I'm sure you could tell, and I stayed quite miserable for most of last week. By the second half of the weekend I was beginning to pick up and now I feel as though I'm actually making some progress. I still don't know why this most recent attack should be causing me more distress post-event than others, and why it continues to run through my head like a film clip on repeat, but it's gradually losing some of its intensity and I'm able to concentrate on others things a bit more. It's helped that I've had contact with friends, and also been reminded that I need to take some of the initiative in instigating some of this contact. I've seen several people over the past few days, and even though I haven't always been up to much it's been great to have company. Today's actually been one of those days when I haven't seen a soul and haven't actually stepped outside the house, but I've been okay with that and haven't felt lonely. In fact I've actually done a bit of reading for my course, which has also served to ease some of the panic about being so very behind again. I'm still behind, but I'm picking my way through the course material and slowly making my way towards where I should be up to.
One thing that really didn't help my emotional state last week was the death of my step-dad's mother. She wasn't someone I knew particularly well, but she did feature in my life and it's always a shock when someone you know dies, even when it's half expected. She'd been ill for a while and I think that she was tired and pretty much ready to let go of life ... that doesn't make it any less sad though ... not really. It's her funeral on Wednesday, but it's in Woking, Surrey, so I won't be going (too far). I will be thinking about her though and praying for her. She was 94.

It takes a while to process death. A death also makes you consider the mortality of other people you love (as well as your own, but that's a fairly regular feature of my life anyway given the nature of my asthma), and this has also been the case over the past five days since Barbara died with the continued illness of another member of my family. This isn't to say that they're about to die ... it's just ... well, it's just where my thoughts are taking me ...
A couple of other things have contributed to my emotional wobble, things that I won't delve into at the moment. For now though I'm coping a little better than I was and I'm relieved to be picking up and coming out of the other side of the misery. There were a couple of days there where I couldn't hold back the tears however hard I tried, and these days that's really not like me. Once I decided to give into them, rather than trying to push them away all the time, I began to pick up, and then I was given the boost of friendship and company too. Friends really are a tonic to the soul.
The other thing I picked up the other day was my camera. I find that viewing the world through the lens makes me look at things differently and gives me a different persepective on the smaller aspects of life and the world. It makes me appreciate the detail again. It's ages since I put any photos up so here are a couple that I took the other day.

Autumn in Jesmond Dene

Robin Red Breast

Autumn in close up

I'll leave you with that for now.


(By the way, for some reason adding photos messes with the format of my posts and seems to do away with clear paragraphs, which is why I've inserted the occasional full stop, otherwise it'd just look like there weren't any paragraphs at all.)

Wednesday, 19 November 2008

New addition to Blogs I Read

I just want to point out a new addition to the list of Blogs I Read. It's Watching Geordie Life and worth a read. Take a look if you've got a spare moment or two, and enjoy :o)


Sometimes it all gets a little too much. Now seems to be one of those times. I don't know why it is that I can cope really well with some attacks and, although a real struggle to survive at the time I get through and move on, but some attacks leave their mark. I've been having trouble getting over the trauma of my most recent admission and I feel really quite fragile. Maybe it's not helped by still being so worn out by it, and I suspect that I'm also a little lonely as I've spent most of my time on my own since I got home. I'm usually fine being alone, but I feel rather in need of friendship and support at the moment, and whilst I know that my friends do care about me a lot, and also support me a great deal, I'm feeling a tad isolated right now. I think some of this is residual from the isolation experienced during a severe asthma attack, because whilst I can be surrounded by medics and nurses during the attack, I can't speak. I can't tell them what it's like. I can't say that I'm afraid. I can't stop what's happening. I can't participate - things happen to me, some of which hurt. I can't do anything more than try to breathe and try to stop thinking about the possibility that the next breath, or attempt at breath, might be my last. I am the centre of the activity, but I am alone in the experience.

Sometimes I cope okay, other times I struggle to get over the trauma. The variation is random, and for some reason this makes the more difficult times harder to deal with.

I don't like feeling like this - vulnerable, fragile, weak. It's disconcerting, and although I know it is different from depression, it has elements to it that remind me of the terrible depression that I've suffered in the past. Maybe it's the lack of control, or the teariness, or the loneliness that I talked about before. I remind myself that this isn't the same, that I will get through without sinking into a depression, that this is reactional to a traumatic event, and probably a normal reaction to being in a life-threatening situation. I will come out the other side and get back on track, but for now I have to find my way through, doing what I can to help myself. The problem with this is that I'm still so tired from the events and it's taking such a long time to recover that I'm limited in what I can do, so I have too much time for thinking and not enough energy to counter the traumatic memories with nice things ... with the company of friends.

Sometimes it's tough being chronically ill, and sometimes it's not easy to stay positive despite a desire to do so. Sometimes it's all a bit of a struggle. Sometimes things are frightening, and sometimes it's not easy to tell people that you're scared and lonely.

Sunday, 16 November 2008

With thanks

Less than an hour after writing my last post I was in dire straits and had the paramedics coming for me. The speed with which I deteriorated was startling, and within 10 minutes my peak flow dropped from 100 to unrecordable. I'd had a couple of friends on stand-by for a few days for when I needed to go in, so I called them and even though one of them was in bed asleep they both came round straight away and were here just before the paramedics, who themselves arrived very quickly. My friends N and J hadn't seen me in quite that state before so I think they were a little shocked, as were the paramedics, who I have to say were brilliant, got me straight into the ambulance where they tried to cannulate me, but with my veins being so overused they didn't actually manage to get one in, but they did give me subcut adrenaline in the hope that it'd help. Unfortunately it didn't help and I think I was actually a little worse by the time we got to the hospital. N sat in the front of ambulance with one of the paramedics on the way to the hospital and was told that the crew had been on all weekend, and although it was by then Monday, I was their first call who wasn't a drunk! Apparently they said that my call had made them feel like they'd done something worthwhile and reminded them what the job was all about. How awful that paramedics can be made to feel like they're not worthwhile and are used as a taxi service for people with nothing wrong with them other than the consumption of too much alcohol. I am so very thankful that they do the amazing work that they do.

When we arrived at A&E I was taken straight into resus where there was a bit of a panic about getting a cannula into me, which was proving very difficult and took several people several attempts, but they were eventually successful. Thank God. They quickly gave me all the drugs they could, but they're limited in what they can give me as I'm allergic to a couple of the ones that are often given for severe asthma attacks, so all they can do is give me what they can and then wait and hope. Unfortunately things were taking rather a long time, I had silent chest, my oxygen levels were low on high flow oxygen, my blood pressure was occasionally going a little too low, my breathing rate was apparently 40 breaths per minute and my heart rate was somewhere around 160. All in all, I was really ill and not improving, so the A&E reg called in the anaesthetists, who were obviously worried and wanted me in ITU. There weren't any ITU beds in the hospital where A&E is, and there weren't any at the hospital where patients are usually transferred to from A&E. There was one at the Freeman, but because there's no emergency admissions unit there, and it was 'out of hours', the ITU reg at Freeman said that they couldn't take me. The A&E anaesthetist got onto his boss, who turned out to be the medical director on call, explained the situation, and got the message back that an essential bed couldn't be blocked in such circumstances and that I was to be admitted into Freeman's ITU under my own consultant who, as you know, is based at Freeman on Ward 29 anyway. Now I know that my asthma is severe, and I know that it gets life-threatening, but there's something inescapable about the reality of it when you have an anaesthetist standing at the end of your bed exclaiming down the phone to the director of medicine that he has a patient with severe life-threatening asthma in desperate need of an ITU bed. It hits home. It's frightening ... maybe because the doctor's fear become apparent. I am so thankful for his persistence though and for all the help that he gave me. He called in another anaesthetist (from her home!) to go with me in the blue light transfer from A&E to the Freeman, although she first of all had to put an arterial line into my wrist. I have to say that I was a little scared by the fact that I needed an anaesthetist to escort me in the transfer as this is a sure sign that they're not 100% confident that I'm not going to make it across the city without crashing. I did make it, thankfully, and even more thankfully I just managed to avoid needing ventilating.

I had an x-ray done when I was in A&E, which other than the usual hyperinflation of asthmatic lungs showed a shadow near the bottom of my right lung. They gave me IV antibiotics in the hope that it was a patch of pneumonia, but they (and then ITU) said that they weren't convinced that it was infection as I didn't have a temperature. I had this uncertainty hanging over me for several days, and I have to say that I was quite scared. The last thing I needed was another problem with my lungs, particularly anything sinister such as cancer or fibrosis (which is a potential complication from one of the drugs that I take to treat my asthma - methotrexate). This has to have been the first time in my life that I've prayed to have pneumonia, but pray I did, and so did my friends. Eventually sputum samples revealed that I did have pneumonia, which thankfully meant that other more sinister causes for the shadow on my chest x-ray could be ruled out. Unfortunately the sputum sample also showed that the MRSA that I've had in my nose and throat for several years has now made it's way into my lungs. In theory this shouldn't cause me any more of a problem than it does in my nose and throat, but I know from a previous time of having MRSA in my lungs that it generally slows down the recovery process for me and makes my lungs more unstable/'twitchy'. This may, in part explain why it's taking me so long to recover this time.

So I made it to Ward 29 in the end, although I have to say that I was actually still quite unwell when I got there, and the staff looked a little surprised that I wasn't still in ITU. After another long, sleepless, breathless night, many nebulisers and hours longer of aminophylline later, things did at last begin to settle, and sometime in the afternoon of the day after I arrived on Ward 29 I was breathing well enough to sleep. I was woken at intervals for nebulisers and other medication, though mostly I stayed at least half asleep even then, but otherwise I slept almost continually for 4 days. I was still very tired and lethargic for several days afterwards, and I'm actually still fairly exhausted. I just feel wiped out by it, which I guess isn't all that surprising given the severity of the attack, the pneumonia, the length of time of my struggle to keep fighting for breath, the anxiety over the shadow on my x-ray and the general stress of being in a life-threatening situation, but I just don't feel right and it's getting me down a bit.

So now I'm home. I've been home for a couple of days, but too exhausted really to update my blog or do anything much at all besides plenty of sofa surfing. If I'm honest, I feel slightly traumatised by this most recent attack. I'm not sure why ... I mean, it's not like I haven't had severe life-threatening attacks before ... some attacks just seem to take more out of me than others, and this seems to have been one of them. I'm okay, and I'll be okay, but I am a bit tearful and have the acute stage of the attack running through my mind quite a lot.

Having said all that, I am immensely grateful to all who played their part in keeping me alive and in caring for me during my recovery. I thank them all whole-heartedly, and I thank my friends too for being there for me, particularly N and J, and for those who came to visit me on the ward.

I'm thankful that I survived again, however tough it was.

Monday, 3 November 2008

Count down

I got to the medieval party on Saturday :oD It was fantastic and I had a wonderful time. I will do a separate post about that, but probably not for a week or so, because now the adrenaline that's been keeping me going over the last couple of weeks is fast disappearing and I think that I'll be heading for hospital either tonight or tomorrow :o( My peak flow is making a rapid decent from it's already low levels to even lower readings, and if I continue on as I am then I may only make it an hour or so until I'm calling for an ambulance ... and maybe a friend to accompany me through the completely rubbish admissions system that will (if I'm admitted tonight) cause me to be ferried all over the city between hospitals over the next day or so :o( I would perhaps have contacted the ward a little earlier on, but I've been to see a member of my family whose not well and their spouse needed an opportunity to do some important sorting. It's difficult writing about this, because I have to be somewhat vague so as to maintain the anonymity of the people involved. I want to respect their privacy and be sensitive to their situation whilst also representing that part of my life. So anyway, I wasn't grand this morning, but not as bad as I am now, so when I got a call asking me if I'd go up (I got a lovely meal whilst there too :o) ) I said I would, and also that it'd be good to see them. However, I've deteriorated while I've been there and have hurried home as I've had a not too great experience of the hospital that is nearest them. Now I'm home I'm pottering, slowly gathering bits and pieces together for an upcoming hospital admission, whenever that may be. I always have my case packed, but I need to gather my meds; update the list I keep of all my meds so the docs don't have to trawl through a huge carrier bag full of bottles and boxes; and it's always good to have one or two things with me for when (hopefully) I'm starting to feel better.

So on that not so cheery note, I will leave you for now and get on with my gathering, and then wait for the point of splattage.


Friday, 31 October 2008

Couch potato

I have turned into a couch potato. Okay, it's through necessity, but it's frustrating. I want to be getting out and about, doing things ... I'm not sure what things ... just living. At least I should get to the medieval party tomorrow evening :o) which is a large part of my week or two of sofa surfing, although it is also because I'm still not doing a good job at breathing. Actually, I'm pretty certain that once the adrenaline of keeping myself going for tomorrow's party has disipated, I'll end up in hospital ... probably early next week :o( I'm not looking forward to it. Who would though? In a way it'll be a bit of a relief, because it's been (and continues to be) a struggle, but that fight, even the thought of it, is exhausting. I can hardly bear to think about it, and I don't want to, but I kind of have to, because I know it's coming and I have to gear myself for it. It's a strange thing knowing that you might die in a few days time. Of course I always hope that I'm going to get through, but it's been such a close call so many times, and there are no guarantees that I will survive. I don't give up though - I can't, because if I did then there'd be no reason to fight ... and life would be depressing the rest of the time. That doesn't stop it from being hard, and it's sometimes an effort to keep positive, especially as it's so relentless.

The positive thing about being forced to spend so much time sitting still is that I've actually caught up on my work again and I've written my first assignment for my new course :o) It's a short story about a family who receive a letter from their son who's serving in the armed forces. The only thing is that the day they get the letter is the day of his funeral after he's been killed in combat. It's all very sad, and wasn't easy to write or research. I had to do quite a lot of research to get some of the details right and to make it seem authentic, but although sad, it was interesting. I sent the finished piece off last night, so now I have the nervous wait for the result. I always think it must be difficult marking a piece of creative writing as it's so subjective, and I don't much like being on the receiving end of that subjectivity ;o)

Right then, off to do some more sofa surfing, looking forward to the medieval party tomorrow and trying not to spend too much time thinking about the battle that's most likely ahead of me sometime next week.

Monday, 27 October 2008

Still going; still hoping

I'm still at home.

I got to the pudding and games evening last Saturday, which was great fun, and I'm hoping to get to the medieval party next Saturday. I'm not sure if this is realistic, but I refuse to give up hope, because I've been looking forward to this for months. We'll see ...

I have to say that I feel rather naughty for not contacting the ward when the reg said I should if I was no better. Okay, so falling asleep on Friday meant that I couldn't do so then, and after that was the weekend, but today's Monday and I still haven't phoned. I don't want to. I don't want to go in, and I'm not yet convinced that my lungs are definitely bound for a splat in need of hospital ... but they probably are :o( My peak flow is around 120 and I'm not really able to do very much, so I'm practising staying very still. It may be futile, but I'm still hoping that if I rest a lot and don't go far from the sofa or the bed then I might be okay for Saturday. The positive side of this is that it's meaning I'm doing a bit of study and I've actually started writing the story for my next assignment, which is due in by Friday. This is another good reason not to need hospital before the weekend - too much work to do to be ill ;o)

Oh, I don't know. This is a battle with myself, and I really don't know what to do ... I want to live life while I can. I want to have fun. I want to do all those things that I planned to do ... but I also want to be sensible and look after myself. There doesn't seem to be much of a dilemma in this on face value, does there? But I want some normality, and I'm having a moment's resentment of this horrid disease that is asthma, which is stupid, because resentment won't change anything. Resentment only makes you bitter, and bitterness makes you unhappy, so really it's much better that I let go of the resentment and go back to just getting on with it. I'll give myself a boot up the bum in a moment, but it's tricky while I'm sitting down with the computer on my knee.

I'm in a quandry between what I want to do and what I probably need to do, or will need to do before long. It's horrible.

Friday, 24 October 2008

Accidental decision

I'm not a whole lot better than yesterday, despite the slight increase in prednisolone, and this morning I was still umming and ahhing about whether or not to phone the ward, as instructed by the registrar yesterday. I decided that I'd see how things went a little longer and would make a decision by three o'clock. The plan was scuppered by falling asleep on the sofa for a few hours and not actually waking up until almost 5pm, so my decision was made by accident, because the docs would've left the ward/gone home by then. I will take things easy over the weekend and hope that things stabilise, or even improve, but obviously if they don't, or if they get worse, then I'll get myself to hospital. As I said yesterday, although my lungs are far from good, I don't actually feel as though I really need to be admitted ... at least not when I'm not doing anything - moving around is a different matter - and perhaps a little longer than 24 hours on increased pred will help. I guess I'll find out.

One of the difficult things about an unstable chronic illness is the interruption it causes in one's life. I can't make firm plans for anything. I can't guarantee that I'll physically be able to do something on a particular day or a particular time. I still make plans, and I really appreciate the things that I get to, but there's always the possibility that I won't be able to follow a plan through. Take tomorrow for example - my friend K and I have taken it upon ourselves to organise monthly social events for those 18+ at church. This month we're doing an evening of games and puddings, which is happening tomorrow evening at another friend's house. Obviously as one of the people organising it I've been wanting to go, and I'm going to be making a Becky-friendly and gluten-free chocolate cake (K has celiac disease), but I know that the way things are lung-wise that there's the possibility that I won't be well enough, although it's not going to be a particularly active night, it's not far away (and I can drive there if I need to), and at least one of the people going is a doctor. I'll be disappointed if I don't get to it, but I know that I need to be sensible so I will see how things go. There is though something I very much want to get to the following Saturday, and this is a friend's 40th birthday party with a medieval theme and compulsory costume. I've known about it for months, I've bought the outfit - a medieval queen's dress (not the genuine thing!) - and I've been looking forward to it for ages. I'm hoping above all hope that I get to this so I have to make sure that I'm well enough. It's so difficult when there are things that I really want to do, have planned to do, and then see the possibility that I might miss out. And it's not just that I miss out on one thing, but that plans are constantly scuppered and can only ever be provisional. Sometimes I find that I make it to whatever it is that's planned, even if I'm having a bad time in the run up to it, but then do a spectacular splat afterwards ... it's almost like adrenaline alone keeps me going, and then it runs out so my lungs give up. Although this sounds odd, I don't mind that so much, because at least I've done something enjoyable and the thing that I wanted to do, though obviously I wish that I didn't have the post-event splat. Only time will tell if I make it to the games and pudding evening tomorrow evening, the medieval party a week tomorrow, and if my lungs will do a post-event splat, but I'm hoping that I get to them both and that breathing improves. In the meantime I have to be careful and sensible. How boring ;o)

Thursday, 23 October 2008

Which way

My lungs are having a strop and I'm having to wait to see which way they're going to go. I've just been to my out patients appointment at the hospital, and the doc wasn't too impressed, but then neither have I been over the past couple of days. I have instructions to put my steroids up this evening if there's no improvement through the day, and if there's still no improvement tomorrow then I ought to phone the ward and probably be admitted. I really don't want to go in :o( The doctor I saw wasn't my consultant, but the registrar. He's a new registrar, but we have met before when he was an SHO, so he does know me a little. However, I'm not quite as sure as he seems to be that I'll need to be admitted tomorrow, but as he points out, it's then the weekend and beds become more difficult to find and the admissions system isn't quite so straight forward (there's a stupid system that I've talked about before with the A&E department at one hospital in the city, but all the wards being pretty much spread over the two other hospitals in the city, which means that the patient has to be well enough for a transfer). I dunno ... it's tricky. I want to do what is right and what is safest, but I also don't want to go into hospital unnecessarily, or too early so that I'd just be sitting around feeling rubbish, but not quite ill enough for the docs to do anything other than what I can do for myself at home. It's the perpetual dilemma of how long do I wait to find out which way things are going to go ... even though I have instructions from the reg. I'll just have to hope that my lungs decide to play nicely and pick up.

The other decision I've had to make in the past week has been whether or not to tell the OU about the difficulty I had in my exam with the invigilator talking to me throughout. It's been tough, because she was a lovely woman, but after talking about it with several people I came to the conclusion that I did need to tell the university. While I'm fairly certain that I've done enough in the exam to pass, the distraction of having an invigilator speak to you could, for some, make the difference between pass and fail, so I thought I had a responsibility to them to say something. As it turns out the OU were pleased that I did tell them, and they have been incredibly good. They apologised profusely, took details of what happened and who the invigilator was; they've said that they'll send a special circumstances form on my behalf to the script markers explaining what happened during my exam, and they're also going to address the matter with the invigilator involved. I said that I didn't want to complain as such, but suggested that perhaps this person should attend some retraining. However, it turns out that she was at retraining earlier in the year, which obviously didn't sink in, and unfortunately it seems that as a result of this lady's inability to invigilate my exam properly she's probably lost her job. Well, that's not quite how the person at the OU put it, rather that 'we don't think we'll be using her again.' Oops. I do feel a little bad about this, but then she was rubbish at the job she was supposed to be doing, and if it saves anyone else from going through the same thing, and possibly failing their course as a result, then maybe it's for the best.


Saturday, 18 October 2008

Beginning again

I have no time to take a break from study as my next course started 9 days before the exam for my last course. However, this new course is back to creative writing, which is what I really want to be doing, and I'm hoping it'll be a bit of a slower pace than the literature one. I'm still very much in the process of catching up, and although I should be just about starting week 3 today, I'm actually only nearing the end of the material for week 1 :o/ I have actually written something today though. It's only short, and not at all honed, but it's my first bit of creative writing since finishing the last CW course I did that finished this time last year. What I've written is for a short activity/exercise in the course book, and I thought I'd share it with you, but bear in mind that although I've done creative writing before I've never written anything in this genre before. Here you go, here it is:

Breath of Life

I don’t know what I was looking for, or who I was looking for, but I found myself scrabbling away in the dirt searching for something. None of the boulders beneath me seemed to hold any of the answers, and no matter how many I struggled to lift, I didn’t find any trace of another being. I didn’t understand. How could nobody else have survived? Where was everyone? Perhaps I was looking for an answer. Perhaps I was looking for my shoes.
I scrambled over the rubble of what had only yesterday been the majestic city centre theatre, with shards of broken glass and knife-edged chunks of brick cutting into my hands and feet. I hardly noticed the pain – my focus was on shifting the rocky debris to find whatever it was that lay underneath. Surely there must be something, someone. Where? I yelled, but my voice was consumed by the rubble around me. I yelled again, louder, hoping that I might hear a returning cry, or at least the echo of my own voice reverberating off the ruined streets, but it was as if the deep crevasses that now ripped through the roads swallowed up every breath of sound. Every breath of everything seemed to have vanished, except for an unnatural whisper of wind that occasionally flurried around me, whipping up the dust, making me choke, and briefly obscuring the perfect summer’s day sun from sight.
It appeared that I was the only person to have survived, but more ... there was no trace of any other being – no bodies in the demolition. I hadn’t really noticed till now, but where the hell was everyone? Why weren’t the gullied streets and collapsed mounds of shops strewn with ex-shoppers? Had they all run for shelter? But where? There wasn’t anywhere left standing that could have hidden a swarm of Saturday morning folk looking to part with their money. And anyway, if there’d been a scramble for shelter surely there’d have been some left behind and caught in the collapse of the world around them? But no, nobody, only an empty buggy standing upright and undisturbed; a bicycle still propped against a lamp-post that was now bent double as if in pain; and the multi-coloured arms and legs of unworn clothes escaped from the crumbled shops, giving the illusion of life as they waved and danced in the mysterious breeze. I sat on the heap of the theatre and realised that was it – that was why I had only just realised that I was alone. I’d mistaken the ghosts of unreal people for wounded survivors reaching out for help and the dead scattered like beans. The wind was blowing life into the cheerful array of textiles where there was no life ... except me.

Thursday, 16 October 2008

Opening up

We're doing a series of weekly meetings at church at the minute called 'Opened Up'. We've had 5 of the 6 Wednesday evening meetings so far, which are getting us to look both as individuals and as a church how we can open up - where we're up to at the moment, how we imagine things ought to be, where we might like to go, etc. As I say, it's not just thinking about these things on an individual basis, but more to do with looking at the church, our church, the community around us and opening up to them. I haven't been able to get to them all, but I've got a lot out of the ones I have been to and I'm looking forward to seeing what happens as a result.

Part of the structure of the 'Opened Up' evenings is that all those who come have a meal together before the meeting gets under way. The catering is being done by a cafe near church called Cafe Bar One, and where I've been before but only been able to have jacket potato with cottage cheese to eat. Cafe Bar One know of my allergies, but haven't really known what they are so for the first couple of weeks of the 'Opened Up' evenings they gave me what they knew I could have. It was great to be provided for, but I was feeling a little miffed that I'd only get a jacket potato on a Wednesday night when everyone else around me got very yummy-looking food. Well, a couple of weeks into the series I had a call from Jez - the chef at Cafe Bar One - who said that he'd really like to be able to make more for me for the church evening meetings than he had been doing. He asked if I could take him a copy of the list of foods I can't have and he'd work something out from that. I wasn't expecting that, but was extremely pleased and so took my list down the next day, although I have to say that I wasn't certain Jez would still feel like trying to make me something more exciting than a jacket potato after he'd seen the 6 page document that is my dietary requirement list. When I took the list down to the cafe Jez wasn't/didn't seem to be terrified by it, but rather said that he was interested and excited. I left my phone number with him and said that he could call me if he had any questions or wasn't certain about anything he could or couldn't use, and then left him to it whilst expecting to receive a call from him during the week. I didn't get a call. However, the following Wednesday I did get a delicious meal of Tuscan bean casserole :o) Jez hung around before the meal and meeting until I came so that he could go through with me everything that was in it, and then waiting for a little while afterwards to make sure that I didn't have any immediate reaction. I didn't. I didn't have any reaction other than, 'Oh my word, this is delicious!' :o) Jez then said that if all went okay then he'd make up some things that are Becky-friendly and that could be easily frozen and defrosted so that I can have some yummy things to eat in the cafe and don't always have to have jacket potato with cottage cheese! WOW! My world is opening up as a direct result of the 'Opened Up' evenings. Okay, so it's not exactly what the vicar had in mind when he planned this series, but this is such a positive thing for me, because I've been so desperately limited in where I can eat out. Peppy's is fantastic, but it's good to have a cafe I can go to as well as a restaurant, especially one that my friends and I sometimes go to after church :o) Hurray for Cafe Bar One!!!

I think it can be difficult for people to comprehend the impact that true food allergies can have on one's life. So much socialising is done around food that actually, when you factor in the complication of an allergy (let alone many, many allergies), you find that social occasions can begin to get limited ... that life gets restricted. It's fine if those around you are comfortable with cooking for you, and if you are confident in the scrupulous care they need to have taken to avoid accidentally killing you, but on the whole restaurants and cafes etc aren't willing to take that risk (and unless I've spoken to the chef at length and I'm confident they have full understanding, then I'm not willing to take the risk either). I think a lot of the reluctance/straight refusal from restaurants etc to cook for me isn't actually a concern for me, but a fear that if anything did go wrong then they'd be sued. I'm not that kind of person, but I guess they don't know that ... and it wouldn't be good publicity to have it in the news that one of your customers unfortunately blew up, stopped breathing and died.

Perhaps I'll do a post sometime with more specific details of my allergies, so that you have a fuller understanding of the difficulties they impose. On a day-to-day basis I'm used to it all now, though I do have to stay on my guard even with products I've known to be safe in the past, because manufacturers have a habit of changing their recipes without advertising the fact.

Anyway, for the time being I'm sending out huge praise to Cafe Bar One, and I'm delighted that my world is opening up that little bit more.


Tuesday, 14 October 2008

All done

The exam is over and the course is done. I'm exhausted (in a good way), but I think it went okay :o) I did the exam at home with an invigilator being sent to my house, which was great, but would have been better if the invigilator hadn't kept talking to me and asking questions. She was fine most of the time, but did occasionally try to make conversation ... which is far from ideal when you're trying to write three essays in three hours in an exam. I have the long wait for the results now, which don't come through until the middle of December. It's aaaages, and I get impatient waiting, so I'll have to try to pretend to forget about it.

It's been strange today not having any revision to do after three weeks of doing it intensively, but it's been a welcome break. I don't really have the chance to relax properly, because my next course started ten days ago, not that I've had a chance to start it. I'm looking forward to my new course - advanced creative writing - though I have enjoyed having a day off today, and I'm even watching the telly without feeling guilty about not working :o)

Now that I have a chance to have a bit more of a life beyond study again, I should have more time to spend on my blog again, and something other than study to write about.

Be back soon :o)

Thursday, 9 October 2008


Sorry for my disappearance of late. I'm rather tied up with exam revision, but after Monday I will be a free woman again - hurrah!!! I can't wait until the exam's over, especially as I'm now having trouble keeping everything in my head - it's so crammed full that stuff keeps falling out.

So yeah, I'm not dead, and I'm not in hospital, I'm just trappped in the land of study till Monday. I'll be back next week, I promise.

Friday, 26 September 2008


I think I need to be reminded that I'm only a week out of hospital, and therefore need not to be pushing myself quite as hard as I am. Whilst I'm getting very little physical exertion, my brain is spending all day in the revision gym and it's beginning to get over-heated. The problem is that my exam is only two and a bit weeks away, and my recent hospital admission ate a hefty bite out of my revision time, so I have a lot to do in a very short space of time. I know that ultimately it's counter-productive to over-work, but I do have to get my head around the concepts/critics/poems/plays/prose etc that are going to be in the exam. I have spent today analysing four poems by three Romantic poets, and trying to learn snippets of the poems that give the essence of them. It's hard! I have poetry stuck to the walls around the house (Wordsworth's 'Tintern Abbey' is next to the toilet. I wonder what he'd say to that!). I have the basic concepts of the Romantic poets stuck up on the food cupboards in the kitchen - they're getting up close and personal with the lentils - and the critics/theorists of the Realist novel stuck on the tea cupboard where they can have a drink while they ponder. You see, I can tell you where they are, but can I tell you what they say? ... erm ... not really. Maybe I'll end up writing in my exam that 'I cannot remember what the critic Kettle said about the Realist novel (something to do with it's value being in its contribution to human freedom????), but he is stuck up on my kitchen cupboard above the kettle, waiting for a cup of tea.' ... P'raps not.

I'm rambling. It's a sure sign of scrambled brain syndrome. Anyone fancy doing my exam for me? Any English professors out there who want to do my exam for me? That'd be most helpful.

On a completely different subject, Nipper is trying on a name for size - Daniel. It might not fit, in which case he might well try on Jacob, but his mummy and daddy are going to see how he looks in Daniel for a few days :o)

I can't believe it's only 8:25pm. I'm whacked. I could go to bed, but then I'd probably end up waking up even earlier and sleep isn't happening much at the moment anyway. I think that's down to a combination of exam stress and lungs being a bit more grumpy, because of my slight coldiness, but whatever it is I don't like it - I don't like mornings. Mornings are too early in the day.

Oh grumble, grumble, moan, whinge, grumble ;oP

Right then, I'll wander off and bother the cat. He's been trying to sit on me all day and hasn't understood that it's not helpful to sit on your slave when they're trying to study.


Thursday, 25 September 2008

From n-i-p to nipper

Nephew number two has arrived! He eventually made it into the world around midday today and weighed it at 7lb 10z, so although he was three weeks early, he was a very healthy size. Thankfully he appears to be an all-round healthy baby, despite the 'scares' earlier on in the pregnancy and my sister-in-law's high blood pressure throughout. Hurray! As yet the new baby has no name, although I think it's a matter of his parents making that final decision they thought they had another three weeks to come to, and I know of two strong contenders - Jacob and Daniel :o)

I've spent the day stuck in the house, dosing myself up on fruit in an attempt to keep this threatening cold at bay, and also doing/pretending to do lots of revision. I've been somewhat distracted from my studies though on account of Nipper's heading into the world (very literally). He was due to be born the day after my exam, so it's really quite considerate of him to come early, because I wasn't looking forward to trying to concentrate on writing three essays in three hours in an exam whilst knowing that my new nephew might be on his way. Well done that boy! He starts life with a big gold star from me :o)

Well, having nipped in to update you on Nipper, I'd better nip out again and do another half hour of study before stopping for the evening.


Wednesday, 24 September 2008


A quick nip in to say that my nephew-in-progress is in the process of entering the world! He's a little early (3 weeks), but so far all seems to be okay, though I guess we'll find out for sure when he actually arrives.

I'm very excited :o)

I'll be back later with another post, but I just had to share the news.


Tuesday, 23 September 2008


It's that time of year again when the birds congregate on the rooftops and telegraph wires and constantly chatter about where they're heading for the winter months. It's certainly beginning to feel colder now, and this morning I felt a chill when I woke up that made me want to snuggle further under my duvet, rather than get out of bed. I'm not a fan of winter - the cold air can cause havoc with my lungs - and I think the birds have got the right idea that migrating south through the cold months is the best plan. Unfortunately, for us humans, that either means having enough money to have a second home or spending half the year living in a tent or caravan, and I don't know about you, but I don't have the money for the former or the inclination to do the latter, even though I do enjoy camping.

With the winter chill comes the new bout of winter colds - the snuffles and sneezes and misery-making wheezes :o( I'm actually wondering if I'm coming down with the beginnings of a cold at the moment, because I've had a slightly sore throat all day and have been a little bit sniffly. I will ignore it and tell my lungs that there's nothing to see here, no bugs around to get friendly with, no reason to get excited ... and I'll take the more practical approach of consuming large amounts of vitamin C-rich foods too. Oh, and what an excellent excuse to have more garlic :o)

No, winter and cold of any kind is not my thing. Not a fan. Don't want it. I'd say 'bring back summer,' but we haven't really had one ... unless I missed it during a lie in one morning.

Sunday, 21 September 2008


I forgot to tell you that I got the result through for my digital photography course that I finished back in July. The Charge Nurse on the ward gave me a few minutes on his computer last week so that I could log into my OU homepage and see if my result was in, and it was. I passed with 88% ! Hurray! I really enjoyed the course and learnt a huge amount from it, though I have to admit that I haven't had much chance for photography over the past month or so with having needed to concentrate on my other studies at the moment. Hopefully, come 14th October when the exam's out of the way (exam on 13th), I'll get more time for playing with my camera again :o)

Revision for my English Lit course starts in earnest tomorrow. I'm so far behind with it it's stupid, but I haven't been in much of a position to do anything about this. However, I did manage to get myself to the revision tutorial yesterday, which showed me that I've somehow managed to retain more from my initial studies than I thought I had. I'm still worried about the exam, but perhaps a little less terrified than I was. At the tutorial yesterday I also remembered to hand in my one missing assignment from the course - the one I wrote last week when I was in hospital - so hopefully it won't be long till I get that back marked, because it'd be good to know if I was thinking along the right lines and therefore have something to revise from for that - Ibsen's 'A Doll's House', its dramaturgy, and representation of women in a patriarchal society ... kind of. I've learnt a lot on this course too, and continually surprised myself with my assignment marks. All the way through I've thought that my essays have been sparse, because I've only had enough words (damn word limits!) to discuss a fraction of what I would have liked to cover ... they've pretty much all felt like I've only written part of the answer. However, my lowest mark so far (excluding the one I handing in yesterday and am now waiting for) has been 85% so clearly I've been doing something right. Now all I need to do is pre-empt the exam and work out what the essays I'm going to have to write in that are going to be about. Not so easy. Not easy at all. I've never been terribly good at exams - I like to be able to take my time, think through what I want to say, formulate my ideas clearly in my mind before committing them to paper, and produce busy-looking mind maps in the process. No, I've never really got the hang of exams, so it'll be 'interesting' to see how this forthcoming one goes :o/ ................ Nope, sorry, can't convince myself that it'll be interesting, so let me rephrase that ... it'll be bloody frustrating if I fail at the last hurdle when I've done so well so far. Yup, that's more like it ;o)

So, to bed now so that I can revise/get into a panic about revising tomorrow.

Night all.

Saturday, 20 September 2008


Yup, it all went pear-shaped and the day after my last entry I ended up back in hospital. To be honest, I wasn't feeling dreadfully awful most of that day ... just pretty rubbish, but I was short of breath and did have some pain in the base of my right lung, which I thought may have been infection. Since the previous week I'd been planning to meet up with one of my OU friends and his wife for lunch on the day that ultimately went pear-shaped, and I managed to convince myself that I was okay to do this. Actually, I felt quite ill in a general 'I think I've got an infection and my temperature is a bit variable' kind of a way, but I enjoyed meeting up with D and his wife C and we had a lovely lunch down at Peppy's. However, once we'd 'done' lunch and they'd headed off back home after a short stop at my flat before going, I flopped and I gave into the 'I'm not well' thing that my body was telling me. I called the doctors' surgery to see if by any slim chance they might have a free appointment, but was 99.9% sure that they wouldn't as it's usually a case of having to ring up at 8:30am for an appointment and they're all taken by 8:31am. It being around 2pm, I wasn't surprised when the receptionist said that they didn't have any appointments other than emergency ones, so it was either take one of them or go to the walk-in centre. I um-ed and ahh-ed, saying (in part sentences, because I couldn't actually breathe enough to speak in full sentences - oops) that I didn't think it really was an emergency, but I was short of breath, had some pain in my lung, thought I might have an infection, but didn't think it warranted taking an emergency appointment ... on the other hand, with my medical history I wanted to see a doctor who knew me, rather than a random one at the walk-in centre. In the end I asked if it'd be okay if I took the emergency appointment for 5:30pm, and was immediately told, very warmly, that of course it was okay and not to be daft :o) End of call ... except that five minutes later the receptionist phoned back to say that she'd spoken to the doctor, explained what I'd told her and he'd said he wanted to see me straight away, rather than waiting until 5:30pm. Clearly we have different ideas of what constitutes an emergency ... or maybe it's that my emergencies tend to be critical situations these days. Anyway, feeling a little surprised by this turn of events, I put on my coat, picked up my bag, gave the cat a quick stroke and set out to the doctors' surgery. Now the surgery is only four parallel streets away, but I had to keep stopping to get my breath so it took longer than usual and more energy than usual to get there, but in the end I did and the receptionist on the front desk had been forewarned of my arrival and instructed to tell the doctor as soon as I arrived. He had someone in with him when I got there, but I only had to wait five minutes or so before I was called in.

The walk to the surgery (no, for some stupid reason I didn't use Taz to get there. Don't ask me why - I have no clue) had not only made me feel more unwell, but also made me realise that I wasn't well, so that by the time I got to see the doc I felt quite lousy. At this point I still didn't consider myself to be in a state of emergency, but the doc wasn't so convinced. He got me to do a peak flow and wasn't impressed with my grand score of 80. Actually, I was surprised by this as only an hour before hand it had been 130 (still completely rubbish, but a whole 50 better than it was by now), and I'd had a nebuliser since then too. Oops. He looked at me and said, 'For any other 'normal' asthmatic I'd expect them to be on the floor with a peak flow of 80. Can I listen to your lungs?' He did. His response to having listened to them was, 'Hmm, well I can sort of hear some air in the top of your lungs, but nothing in the bases.' Bugger. I knew it was coming - I knew he was going to send me to hospital - though he did first ask how I felt about it. I said that I had too much work (study) to do to be going into hospital, which prompted a somewhat incredulous and exasperated look of despair on the doc's face, and with that he rang my consultant at the hospital. During their brief conversation I could actually feel my lungs getting tighter and knew that I was now heading downhill rapidly. All of a sudden I didn't feel so bad at having taken an emergency appointment. Despite all this, I can't deny that I was disappointed at the docs' joint decision that I should get to hospital asap, so with a quick check that Ward 29 had a bed, a blue-light ambulance was called.

Usually when I'm ill enough at the doctors' to need an ambulance then I'm kept in the room with the doc or with one of the nurses, but for some reason on this occasion I was to go and sit back in the waiting room for the ambulance. A little irregular, but I didn't think much about it and started my breathless trek the twenty yards up the corridor ... in stages, like an expedition up Everest. I was on the third or fourth leg of my assent up the hall when I saw the FRU paramedic at the front desk asking where he could find me, and I heard the receptionist say that she thought I was in room 5 (where, indeed, I had been). I raised my hand and said as best as I could, 'I'm here.' To say that the paramedic looked aghast would be putting it mildly. He took hold of me, said, 'Bless you, you're really tight there,' and then turned to the receptionist saying that we needed a room now. There's a treatment room just off the waiting room/area that's used by the district nurse etc and this was immediately unlocked for our use, so I was guided into there, sat on a chair, and supplied with oxygen while the lovely paramedic called Dave (so his uniform told me) got a nebuliser sorted for me. During this time the ambulance crew arrived, and were shown in, whereupon Dave told them how he'd found me struggling up the corridor on my own even though I was clearly very ill. I could see their point, but I have to say that on the whole my GP practice are superb, and this is one slip in years of fantastic care from them so I don't hold a grudge.

Anyway, they got my history from a combination of a print out sheet (or four) the doc had handed me to give to them; all my cards and laminated letters; and an increasingly breathless conversation/gasping of words. Dave was pretty keen to get some hydrocortisone into me, but this required a cannula and after two attempts he'd had no luck so instead he and the ambulance crew decided just to get me into the ambulance and on my way to the Freeman Hospital. Once in the ambulance, he actually tried to cannulate me a further three times, but my veins are so over-used and scarred from hundreds of past cannulations that it's not at all easy to get venous access in me these days, which I have to say is something of a concern. There was no success in the cannulation department so we sped off up to the hospital, Dave having left his FRU car outside the GP surgery so that he could accompany me in the ambulance as he 'didn't trust [me] not to go off.'

On arrival I found my consultant had come up to the ward to see me as I came in (very nice of him, I thought ... though also rather an indicator of what shape he thought I was in). The ambulance crew and Paramedic Dave handed me over to the nursing staff, and then there was the swarm of medics ranging from F1 (previously known as House Officers) to consultant with everything in between, all of whom were desperate to get a cannula into me. I had an F2 at my left hand, an SpR (registrar) at my right hand, and the consultant at my feet, and a small cheer went up when the SpR (S, as there was more than one SpR there - also V, Re and Ri) eventually got access in my right wrist. Then it was time for blood gases (horrid things), followed by a quick injection of hydrocortisone before my usual aminophylline infusion was started, and the ITU team were called to come and see me.

It was a fight. It was exhausting. I went into acidosis - both metabolic and respiratory, so I was told. I did something new too - I managed to get dangerously dehydrated, which was all a bit weird, and I ended up needing so much IV fluids that they called it 'resuscitation'. I'm not quite sure how, but some how I managed, by the skin of my teeth, to avoid going down to ITU, although the anaesthetist was up to see me four times in the first night alone, so it really was a close call. After about 38 hours or so things started to settle and they all got ever so excited when I finally had enough breath to create a small wheeze, as up until this time I'd had a silent chest. Some time after that I finally had enough breath to sleep, and sleep is something I do very well after a long exhausting battle with asthma, so I stayed asleep (being half-woken briefly and intermittently for nebulisers to be given, bloods to be taken and gases to be checked) for 48 hours. It took a long while for me to get through the sleepy stage this time, and although I was more awake than I had been after this initial 48 hour sleep, I remained very sleepy-tired for a number days. It also seemed to take longer than usual for things to really settle, which is most likely why I was still so tired I guess, and I ended up needing to stay on the aminophylline for eight days, when I'm usually on it for more like four or five. I don't know why this is - whether it was just this particular attack, whether it was down to how acidotic I got, whether it was the queried infection (as indicated as a possibility from my blood tests, though my x-ray was clear for infection), or if it's just that I'm getting older and recovery is slower. Whatever the reason, it took time for me to get my bounce back, but eventually it returned and I was well enough to resume my study worries. I actually ended up writing my final assignment for English Literature course whilst in hospital this week, at a point where I was still on the aminophylline infusion and on oxygen! I'm not sure if that's dedication, foolishness or the effects of hypoxia ;oP

I finally got home yesterday mid-afternoon, although this wasn't without it's complications. Sometime earlier in the week my dad had visited and had brought with him my foldy-uppy wheelchair (not Taz, the other one) so that he could take me for a trundle in the park over the road from the hospital :o) Now there isn't usually any problem whatsoever about getting me, my stuff and my foldy-uppy wheelchair back home from hospital, but most bizarrely there seems to exist such a thing as an ambulance that doesn't take wheelchairs! Excuse me, but huh?! I've got foldy-uppy w/c in a micra before, so how come it doesn't fit into an ambulance? It was all very weird, but the guy who initially came to take me home insisted that this was the case so went away again without me :o( This meant that my ambulance home had to be re-booked for the afternoon (I'd previously been told to be ready to leave at any time from 9:30am) and that I was put on the bottom of the list :o( However, a nice guy with an ambulance that did take wheelchairs came fairly quickly, picked me up, brought me home, carried all my bags into my flat and left me with a smile :o)

Home at last :o)

(Oh, and I've lost any trace of guilt I had about taking that emergency appointment at the GP surgery)

Monday, 8 September 2008

Tough day

Today has been really tough, and is continuing to be this evening. I didn't get any sleep last night, because every time I lay down my lungs decided to tighten up, and then even when I gave up on the lying down bit, my lungs refused to play nicely. Now I don't know why this should be, but here's a very strange thing I've noticed: a day or two before a bad spell (or major attack) my heart rate goes very low, particularly at night, and last night I noticed that it was going slowly so I counted it and it was only 49bpm. I'm sure there must be some medical explanation for this, even if it's not a common thing, but it is something I've noticed and is almost like a warning sign for me that things aren't good and they may well be about to get worse. Indeed, today has been a bad day.

First thing this morning I was able to go out briefly to the local post office, where I needed to go to post a parcel for baby Eleanor, but before I got home my lungs were beginning to hurt. By the time I got home I was exhausted, tight-chested and very much in need of a nebuliser. I sat on the sofa and nebbed my lungs into vague submission, and then stayed on the sofa for several hours unable to do anything much at all. I have been coughing a lot, wheezing intermittently, short of breath, exhausted and generally feeling rather unwell. At some point in the day I made the effort to read ten pages of my course text book, but I don't think I've taken much in, and since putting it down I've done a lot of nothing again.

I went briefly to the shop around the corner about an hour and a half ago to get some milk and I'm still suffering for the exertion. My peak flow is 140 post nebuliser, and my lungs just don't feel like they're doing this whole breathing thing as they should.

This evening I really don't feel very well. I will see how things go, but I have a feeling that if they go off (which I'm hoping they won't), then it's going to be very fast and I'll have to act very quickly. I am not parting from my community care alarm tonight.