The daily life of a brittle asthmatic. The experiences of the disease, of multiple and frequent hospital admissions, and of making the most of breathing when it's possible.
A favourite quote and a way by which to approach life.
Sunday, 8 November 2009
As expected
I got home and I got worse, probably precipitated by trying to walk and by having to make various phone calls to the hospital to get hold of my consultant. By this time my fantastic friend W had come over, ready to take me up to the Freeman as soon as we heard back from the consultant’s secretary to say that the ward had a bed for me, and within fifteen minutes of the call we were on the ward ... and I was going further downhill. I think that once I get to hospital sometimes my body kind of knows that it’s in a safe place to let go and I get worse ... it’s a bit weird really, but it’s happened on more than one occasion. So anyway, from then it was a long, hard battle, with the intensive care docs coming up to see me regularly and phoning the ward to check on me at other times. I really, really hate ITU so was relieved to struggle through without having to go there, but I know it was a close call. It took something like 22 hours for things to eventually settle to a more manageable state, and of course afterwards I was completely exhausted so I fell into my post-attack big sleep. My lungs still weren’t great, but they were a whole lot better than they had been on admission and I was able to sleep reasonably well, until I had a very rude awakening on the Sunday morning with my lungs having gone into tight spasm again and I was right back at the beginning. I had another 20 or so hours of battle and ITU coming up and phoning up regularly, and with being so exhausted from the previous struggle to breathe it all felt so much harder. Somewhat amazingly I got through it without having to be taken downstairs, but it was a close call again. It really is horrible. It’s a full day’s run at a sprint, unable to stop for any kind of rest, with no breath or energy to eat to keep you going, and barely able to drink because you’re putting everything you have into breathing quite unsuccessfully and timing the two things so that you don’t choke isn’t easy. Add to this the feeling that you’re trying to breathe through a tiny straw with a pillow stuffed in the end and you get a fraction of an idea of what it’s like.
I made it through. I survived. I fell back into that exhausted and exhausting big sleep and I stayed that way for three or four days, through lighter chest-tightness that the nurses recognised and treated as required, but I was too exhausted to wake up very much for. It’s a strange experience, though it’s not an alien experience for me.
Now I’m mending, with the aminophylline drip down and the oxygen reduced to two litres (I was on 60% so that’s a huge improvement). I’ve been out of bed a few times – the first time only for one exhausting hour, but the next day for four hours, and today I’ll push myself for a lot longer. I need to if I’m to get home, and I’m hoping for that around Tuesday, provided I can get off the oxygen easily enough. This is slightly complicated by the fact that my anaemia has got a significantly worse, with my haemoglobin (Hb) having gone down to 8, which means that my blood doesn’t have the same oxygen-carrying ability that it ought to. It’s also making me feel very light-headed, very tired and generally unwell. However, because my Hb is now so low the docs have had to find some way of treating it, and because there are significant risks with blood transfusions they were reluctant to go in that direction, so they got pharmacy onto the case. One of the pharmacists – Matthew – spent a large part of last Friday investigating iron preparations, including phoning all manufacturers of iron preps. He checked, he double checked, he triple checked and eventually he succeeded in finding one that he was 99.9% sure wouldn’t send me into anaphylaxis and kill me. He brought them to the ward, and the doc gave me my first dose, though he asked for a lesson in using my epi-pen first, which was quite amusing in that he very nearly stabbed himself in the thumb with the pen, despite my giving what I thought were clear instructions. Mind you, he is a bit of chocolate teapot doctor – he’d come in a couple of days previously saying, ‘You know, I don’t think ferrous sulphate has sulphate in it,’ sulphates being one of the things I’m dangerously allergic to. Now I might be wrong, but I’m fairly certain that chemists don’t just pull random names out of a hat when they produce drugs, and I’m guessing that the name ‘ferrous sulphate’ is something of a clue that it contains sulphate. So anyway, after the epi-pen lesson and near-incident I took the first dose of the iron preparation that Matthew had found and I didn’t immediately die – hurray! However, there’s a four hour period of danger between consuming an allergen and it causing an anaphylactic reaction so it was a rather anxious wait for all of us, so I had my epi-pens and call-bell to hand, and each time a nurse went past my room they asked how I was. Thankfully all went smoothly, I’m still alive with no adverse reaction and I’ve had several doses since. This is a huge relief, not only the lack of reaction, but also that the anaemia can now hopefully be sorted and I’ll begin to feel better in that respect soon, although it can take several weeks, even a couple of months, to get the full benefit. At least I might stop passing out/nearly passing out before long, and that would definitely be a good thing.
You know the irony of my admission on 30th October is that this was the date I was supposed to have been doing my sponsored gym marathon to raise money for the Ward 29 – the ward I’m in. I had always put the proviso in that I would only do it on that date if I was able to breathe well enough, which obviously I wasn’t, but I had really hoped that I’d be able to do it when planned. I’m still going to do it, and I’m now planning it for 25th November. I know this isn’t far off and I have to regain strength and fitness in a fairly short period, but I am determined to do this. Nothing I can do, and no amount of money I raise, will ever be a big enough thank you for all the ward does for me and for keeping me alive against the odds. The advantage of having to postpone the gym marathon is that it gives more time to gather more sponsorship, so if you haven’t already and you’d like to please sponsor me/donate through my Just Giving page
Thursday, 29 October 2009
Broken
Actually, before I go up to the hospital tomorrow I have to go to a GP appointment because I've been breaking in ways other than my lungs and my blood results came back today. It's all a bit long to give a blow-by-blow account, but to say that I've been passing out/nearly passing out rather a lot and have had various other random symptoms. After a series of appointments and blood tests it turns out that my anaemia has got worse again and that my ferritin levels are low, although the receptionist didn't tell me how low. Anyway, I have to go for an 'urgent' appointment tomorrow morning, which means that there's a slight risk that the GP will be freaked out by my lack of ability in the breathing department and will want to send me to A&E before I get a chance to get up to Freeman. I'm hoping not, and the fact that my consultant is expecting me to call should help prevent the risk of despatch to the General Hospital where A&E is. Let's hope that the GP trusts me to get myself sorted with my lungs and that she can sort me out with regards the anaemia and low ferritin. The problem, as we discovered before, is that there doesn't seem to be any preparation of iron supplement available that doesn't contain something that I'm not allergic to (are there too many negatives in that sentence for it to make sense?), and the pharmacist suggested that the only solution might be to see if it's possible to have a preparation made up especially for me, but this would cost £70 - £100 a time and so would probably require PCT funding. I suspect that's a long and complicated process, but I can't keep on passing out and collapsing in a heap so something's going to have to be done.
So that's a quick update from a slightly broken person who had a broken internet, but who now has a mended internet and is hoping to get mended herself very soon.
I'll be back soon with more of an update, more info and hopefully more breath.
Sunday, 11 October 2009
Cathedrals and the bishops
This is the moated entrance to the grounds of the Bishop's Palace. You can just see some cygnets on the water, and I read in the palace that the swans on the moat/river learnt many, many years ago to ring a bell that's attached to the wall and be fed by the occupants of the palace. The swans have passed the skill down from generation to generation so that apparently they still ring the bell for food even today, though I have to say that we didn't witness this.
And this is the side view of the palace and one small section of it's lovely gardens. You can see it's proximity to the Cathedral by the Cathedral's tower peeking over the top, but I'll come to that in a mo. The gardens of the Bishop's Palace are lovely, and although it was wet we had an amble around and enjoyed the atmosphere. There were a number of sculptures in the gardens that were part of the Somerset Arts Festival, so we took our time looking at some of them, and there was one that I particularly liked of three swans in flight ...
It's not the clearest photo of them, but it gives an impression. There was something very pleasing about the simple lines and the gleaming metal that reflected the grace that these birds have.
Going back from the palace into the market square, and then almost doubling back on yourself through a little arch way in the corner you follow a path for a short distance and come face to face with this ...
The Cathedral. It's quite an awe-inspiring sight, and you need some time outside it just to take in it's size and splendor. However, as you'd expect in a building of such grandeur on the outside, there are some wonderful sights to take in on the inside too.
This is a detail of some lace work that's at least a few hundred years old, so far as I remember. It's in a small cabinet, in a darkened corner of the bottom end of the cathedral, but I stumbled upon it and thought it was beautiful and amazing. Think of the work that's gone into it, and how amazing it is that it's lasted all these hundreds of years.The other Cathedral we went to was Bath Abbey. Bath is another beautiful city, though it has perhaps a bit more elegance and grandeur in it's whole demeanour than Wells. The Abbey isn't as awe-inspiring from the outside as Wells Cathedral is, but it's still very fine and far from small ...
And here are some photos of the interior ...


Monday, 28 September 2009
Over and under
It has to be said that W and I had a fantastic time away and did a heck of a lot. I had been hoping to blog during the course of the holiday to let you know what we were up to, but we were so busy that I didn't have time, so I'm going to do a series of retrospective posts, starting with our trips to Cheddar Gorge, Cheddar caves, and Wookey Hole. We didn't go to Cheddar and Wookey on the same day, but it seems appropriate to put them in the same post.
The first part of our trip to Cheddar was a bus tour up the road that ran through the middle of the gorge. We'd actually just driven down this road so had seen some of its splendour already, but as I'd been driving and having to negotiate some very tight blind corners it was good to be able to look around freely without risk of causing an accident. Here are a couple of photos of the gorge from the bus tour.
After our long (and possibly slightly foolish) hike along the gorge walk we had a much easier descent. It was still down a fairly rugged path, but it was downhill and that makes a lot of difference when it comes to breathing :o) We both managed to avoid any breathing crises during the walk though, which I think we deserve medals for :o)
And just after seeing the wild goats I saw something out of the corner of my eye do a little scurry on the ground to my right. I turned and saw this little chap.
That was about it for our excursion to Cheddar, so next is a little bit on our trip to Wookey Hole, which was actually the following day. Wookey Hole is touristy in a different way to Cheddar - more theme park-y. However, rather than an audio guide that is at times slightly irksome (as is the case at Cheddar), the tour of the caves at Wookey is guided by a person - a man. During the tour he tells the legend of the Wookey Hole Witch and how she is said to have been turned to stone by the incantations of a priest and his splashing her with holy water. The photo below is of the rock that is said to be the witch turned to stone.
The caves were amazingly spectacular ... awe-inspiring ... magnificent. And then you step outside and come face to face with this ...
It's a bit of a shock to the system to go from the wonders of nature hidden deep in the Earth to an over-sized, plastic gorilla. Get into the spirit of it and it's okay, but it does feel quite random. However, W and I did get into the spirit of it and I took several more photos of what was to come, and it's very different from the beauty of the caves.
Sunday, 20 September 2009
We've arrived
The sat nav did a wonderful job of getting us here, except for the last little bit where it took us to the wrong house, but the woman there was friendly, helpful, and directed us to the manor house. Our cottage is attached to the manor house, which has a brook that serves as a moat. It’s very, very lovely here and ever so peaceful. When I woke up this morning I lay in bed for a while listening to the sound of nothing but a crow :o)
The cottage and the manor are both very old, with parts of the manor house dating back to Norman times! Obviously we don’t get to see inside the manor as it’s lived in, but we are right next door (actually, we’re attached to it), and the cottage is full of character – big, old beams, a slopey floor upstairs, a wood-burning stove in a huge, stone fireplace, walls that are 2-3 feet thick, and a twisty little staircase ... which I fell down last night and banged my back really hard. It winded me completely so for a moment I wasn’t able to breathe, and apparently I went completely white, but in the end I was fine; just sore. I feel a bit battered today, but nothing that’s going to spoil my time here.
So today is a lazy day. We’ve had a looooong lie in, and now we’re lounging in the living room. In fact W is still in her pjs even though it’s almost 1:30pm :o) We’re planning on going for a look around Frome sometime this afternoon and then go to one of the local churches this evening. W is a Baptist where as I’m Church of England. It doesn’t really matter as it’s the same God, but the worship is different so what we’re used to is different. We were talking about it last night and trying to decide what to do about going to church – we both wanted to go to a church today – and in the end I came up with a plan: we could go to the Baptist church this evening, but go to evensong at Wells cathedral when we head off there later in the week. Anyway, it’d be crazy to go to Wells cathedral and not go to evensong.
Well, W has gone off to get dressed so I’ll make steps to get ready for going out. It looks like a lovely day out there so we’d better make some use of it.
Catch you later.
Monday, 14 September 2009
Off again
Longleat. I wasn't originally planning on taking the car here, because of the risk of it being wrecked by the monkeys. Instead we were going to arrive by public transport so that we could take the safari bus, but it seems that the poor monkeys have some kind of infection that they're not supposed to be able to get as their an isolated community, so the monkey section is closed. I think it's less likely that a lion or giraffe is going to come and sit on the car and pull it apart.
Cheddar Gorge. Apparently I went here as a very young child, but I don't remember it at all and I've wanted to go for years. It's actually part of my reason for suggesting to W that we go to Somerset.
Wookey Hole. I'm not entirely sure what to expect at Wookey Hole. I think it's something like Cheddar Gorge, but a bit kind of theme parky. We'll see. There's some kind of myth about witches and they have people dressed up as witches. They recently employed someone as a new witch, who is allegedly being paid £50 000 a year!!!!!!
Wells Cathedral. I've heard wonderful things about Wells Cathedral and wanted to see its wonders for myself for quite sometime, so I'm looking forward to this. It might be a bit of way to drive there from Frome - I'm not very sure - but it doesn't matter.
Stourhead. This is a National Trust property that is said to have beautiful gardens. I guess whether or not we get there depends somewhat on the weather, but it'd be nice to go if we can, and it's one of the places that's suggested on the cottage website.
Bath and the Thermae Spa. I went to Bath in 2006 and loved it - it's beautiful and full of history. The Roman Baths are fantastic and the abbey is lovely. The thermae spa is right next to both of these and you can bath in the naturally hot spring water on the roof top with the abbey towering above you on one side, the stone-carved Roman soldiers at the Roman baths on another, and views of the rolling countryside of the Chew Valley on another. There's a lot to see and do in Bath if you want to, and during the time that we're in the region Bath also have the Children's Literature Festival running, which is just perfect timing for my new course so we'll probably take a look at that.
Stonehenge. This is another place I went to in 2006, but definitely worth a second visit. It was smaller than I'd expected, but had such an enigmatic atmosphere. It was fascinating and I'm looking forward to going again. I didn't explore any of the surrounding country and the other stone circles in the area so maybe W and I will while we're there ... if it's not too cold and wet (I'm desperately hoping for good weather while we're away).
It's going to be quite a packed week, and if we're going to get it all done then we'll have to do more than one thing some days. I hope we have some time to relax and enjoy the cottage too amongst all the activity and don't come back exhausted and in need of a holiday ;o) It should be great fun though and I'm really looking forward to it. We go on Saturday. It's quite a drive from here and I'm expecting it to take at least 6 hours, but I've put W onto my car insurance for the week so that we can share the driving if need be. Having said that, I do enjoy driving.
Right then, I'd better sign off for now and make my way to the gym for some more training for my gym marathon at the end of next month. The training's going pretty well, but I'm definitely having to pace myself so that I don't get too exhausted or push myself too far too quickly and end up in hospital. That would be counterproductive, wouldn't it?
Monday, 7 September 2009
Case concluded
1. Theft
2. Failing to surrender to custody at appointed time
The John Francis Joseph O'Donnell [I bet he's Irish Catholic!] was sentenced as follows:
1. Ordered to pay the court a fine of £90
2. Ordered to pay the court a fine of £30'
I expect that £120 is probably quite a lot of money for this bloke, seeing as he's a scrap metal merchant ... who's so desperate for cash that he tried to nick my aluminium watering can with holes in the bottom. It must have a scrap value of about 10p!
I must just share with you the last paragraph of this letter I have from the CJS:
'I would like to thank you for your assistance as a witness in this case. Your evidence was very important in bringing this case to justice and your contribution is greatly appreciated.'
This makes me laugh so much. I didn't see anything! I didn't hear anything! I was asleep at the time! I only knew about the attempted theft because of a phone call from my neighbour who *did* actually see it happen! The crucial bit must have been that I looked out of the window after being informed of the crime and sure enough, there was a distinct lack of holey watering can in the spot that it should've been. This must have been vital information and deeply significant in the successful outcome of the prosecution. What it is to be a helpful member of society in police investigations ;oP
Oh yes, the letter also informs me that I can apply to the Criminal Injusries Compensation Scheme for the psychological injury this crime has caused me, and that if I wish I can also take 'the person responsible' to the civil courts. You know what, I think I might just not bother with that. It's not stoicism. It's not the Great British stiff upper lip. It's not that I'm too traumatised to be able to deal with such things. No, it's because it's so bloody ridiculous! ;o)
I'm still disappointed not to have to go to court though.