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

Today is the tomorrow that you worried about yesterday.

Thursday, 29 May 2008

Urban countryside

I went down into Jesmond Dene today, which is a little patch of countryside in the middle of the city. It's basically a park with a stream (the dene) running through it, but was originially Lord Armstrong's garden before he left it to the people of the city in his will. It's lovely down there, and if you look on at the bottom of this page you'll see that one of my favourite places in Newcastle is the big waterfall by the old mill in Jesmond Dene. I went on a photo mission today in an attempt to catch up with some of my OU digital photography course so here are a few photos that I took.

This is the big waterfall. As you can see, it's not enormous, but it's the biggest one in the dene.

This one is of the old mill, which you can I see I've turned into a black and white image. It's only a small ruin, but I like it, and I like that the mill wheel is still there, even if you can't get to it.

On my wander back towards the car the following little scene caught my attention. It's nothing very special, but I thought it pretty.

And then, before reaching the car, I went for a short mooch around the pets corner, where first of all I saw a very friendly and inquisitive love bird ...

... and yes, it was hanging sideways. Then I saw the most beautiful peacock, who was very helpfully sitting up on a perch with his glorious tail feathers tumbling down towards the ground.

This last photo is probably my favourite of the day. Isn't it beautiful?

Monday, 26 May 2008

the Newcastle-Gateshead millennium bridge

I went for a bit of a wander by the river last night to clear my head a little. I love it down there at night when the bridges are all lit up, and although the millennium bridge (The Blinking Eye, as it is affectionately called due to the blinking action it makes when it opens/raises) is the newest of the river's bridges, it is one of my favourites. I took my camera with me last night and took a few photos of the bridges. It was relatively mild and good to get out and blow away some of the miserableness that was lurking within. It didn't get rid of it, and I still had a few tears before bed, but it helped to focus on other aspects of life and the wider world.

Here's another one of the Blinking eye, with the other bridges in the background and the SageGateshead on the left too. I love how the arches of the bridges and the SageGateshead are all reflected in each other, creating a real sense of unity. The quayside area of Newcastle used to be a kind of wasteland area of warehouses that would occasionally spontaneously combust/be subject to arson when I was child. It's amazing and wonderful to see how it's been transformed over the years to become the vibrant and beautiful area that it is now.

Sunday, 25 May 2008


I think I have to admit to having a bit of an emotional wobble at the moment. I'm okay ... just a little overwhelmed at the moment. Sometimes hospital admissions do this to me (or at least contribute), and although I'm not entirely sure why this should be when my most recent attack wasn't the worst I've had, I think it might be something to do with the relentlessness of it all. I know that I'm okay now - that I've got through another asthma attack - but I also know that it's only a matter of time before I have to do it all again. It's a bit of a case of feeling sorry for myself I guess, which is boring and miserable for you, and really not what I'm about, but I can't help but let it get to me sometimes.

There's a lot going on at the moment, not only with my recovery from my most recent hospital admission, and the energy it takes to get back on my feet and back into life, but also with an on-going situation of an ill family member. Then there's my OU work, which is great, and on the whole I think it keeps me sane, but it's difficult to be playing catch-up all the time. I have another essay due in in a couple of weeks time, for which I still have all the reading to do. My tutor is very helpful and has actually given me an extention on this assignment into the summer when the course is a little quieter, but I'd rather not have it hanging over me if I can help it. The week before I went into hospital (though whilst I was still struggling on the downward spiral towards admission) I was supposed to restart the digital photography course that I had originally begun at the back end of last year. I'm now behind with that too, although I guess I'm lucky in that I'm the situation where the bit that I'm behind with is actually the bit that I did when I started the course last time round. I'll get there, I know I will - it's just a bit of a struggle to get back on top of things.

One of the difficulties with chronic illness is it's over all impact on life and the relentless interruptions it causes. Now if these interruptions were things that could be planned for (in terms of timing, rather than just occurrence) I guess it wouldn't seem quite so disruptive, but I do find the randomness of it all rather waring at times. It would be nice to be able to plan things and know that I'll be able to do them - that I'll be breathing well enough on the day to do whatever it is that is planned. It would just be nice to be able to rely on breathing for a bit. Most of the time the inconsistency of my ability to breathe is just a part of life, but every now and again it irks me. Now seems to be one of those times. I gave up resenting my illness a long time ago, because resentment only leads to bitterness and depression, which quite frankly isn't worth it, but it's not always easy just to grin and bear it.

I'll be fine, I know I will. I'll get back on top of things and I'll get back into the flow of life. I'll get on top of my work. I'll get my head around the ill-health of a family member and work out how best to support them without doing myself in in the process. I guess I just need a bit of wobble time to assimilate all the messiness of life, and in so doing, tidy it up a bit in my head.

Wednesday, 21 May 2008

The letter

Here's a very short and silly little poem I came up with when I was in hospital this time. I don't know why things like this come to me when I'm ill - probably self-distraction - but here it is.

The Letter

I saw a letter on the beach -
No envelope, but free.
It waved and twisted in the wind.
It was the letter C.

Tuesday, 20 May 2008

I prophesy

Okay, maybe not, but I was right that my lungs were going off and I didn't have long left before an admission.

After my last posting here I had a terrible night and gave up on trying to cope alone not too long into the morning of the next day, and I pressed the Big Red Button (the community care alarm). Although there have been several occasions when I really ought to have pressed the Big Red Button, this is actually the first time that I have done so, and I have to say that I was terribly impressed. After my alarm had remotely dialed my phone to the care alarm base, and the rather bored-sounding man who answered realised that this wasn't a test call and that I could barely speak to him, everything happened very quickly. He immediately called the ambulance, who arrived within 4 or 5 minutes of my having pressed the Big Red Button, and was very closely followed by the community care alarm warden. She mainly looked on (and looked worried) while the paramedics did their thing (and who also said, 'We're not going to stay and play; we're going to scoop and run', which is phraseology I've heard of, but never heard said in the situation it relates to), but she did go on to keep the people at her base informed as to what was happening. So yeah, the Big Red Button system works and I'm impressed.

The lovely paramedics (unusually, it was two women, which was rather nice) phoned my usual ward to see if they would take me in crisis even though it was a Sunday, and thankfully, as it was morning there was a doctor on the ward doing rounds so I was able to go there. Oh yeah, and it also helped that they had a spare bed/cubicle for me (I have to have a cubicle, because I have the company of Mrs A). It is so much better when I can go straight to my usual ward, rather than having to battle my way through the emergency admissions procedure of A&E and/or EAU, and the ferrying around the city by ambulance that goes with that. It may be a good system financially, but it is not conducive to healing, because you can't settle in one place and you never know whose looking after you or how long you'll be somewhere. Also, if like me you have a condition that doesn't exactly follow the text books, it can be frightening having your life in the hands of people who don't know the complexities of your disease and who may, or may not, pay attention to what you say about what helps/doesn't help. Most medics are fine and are more than happy to take note of what I say, because they know that I've dealt with many crises in my health before, whereas what they are seeing may be the first crisis of mine that they've seen. However, I have had some experiences of 'doctor knows best', some of which have been stupidly dangerous to me, and have consequently knocked my trust. Anyway, this time there was no need to worry about any of that, because I got to go straight to my second home, where even if the doctors are new (they change every 6 months), the nurses have known me for years and will fast kick any pompous young doc into line if they think that I'm not getting what I need.

This wasn't the worst attack I've ever had, but it wasn't the least significant either, and it took a long time to settle - somewhere around 35 I think. Even after initial settling it always takes time for my lungs to really get their act together, so whilst I may not have been desperately fighting for breath after the first 35 hours, breathing still wasn't an easy 'do it without noticing' thing for several days. However, I eventually came through it and I had my usual big sleep - 2 days - and then I began to feel a little more alive. It's always good when you realise that you've survived and that you will have more days ahead of you to make the most of. It can also be a bit ... what's the word ... um ... ground-bumping when you think about how close you were to not making it through, which is why I always have a day of feeling miserable after an attack, even though I'm pleased to have come through it. I'm sure there's some emotional logic in that somwhere.

I don't want to go into all the events of the couple of days prior to this splat, because it could contravene another's privacy, but I will just say that they were very stressful days and totally exhausting. On the Friday night prior to the lung splat I had practically no sleep at all, and then I was busy all day on the Saturday with the same stressful situation, all the while feeling increasingly unwell. Then, as I said before, the Saturday night was very sleepless, this time due to my lungs not doing their breathing thing very well. By the time it came to the splat I was so exhausted to begin with that I truly doubted I had the energy to get through it ... I was scared. I had one of my priest friends, C, come and sit with me for a couple of hours during the battle for breath on the Sunday night, and he really helped calm my fear, even though my breathing was no easier. I knew that he, many of my friends and those at church were praying for me, and you know, I'm sure that it's only through their prayers that God gave me the energy to survive this time, because I really didn't have any reserves of my own to draw upon.

Let me tell you something ... When C came to sit with me in those long dark hours of breathlessness, there was a point at which I was thinking about the prospect of death and of dying and of how that made me feel. I had this kind of image/picture of standing in darkness almost alone, except for a small, wizzened man/being/creature standing feet away from me. He looked me in the eyes and I knew it was the creature of death even though nothing was said. We both stood looking at each other and I could feel myself getting weaker with his gaze, but he made no movement towards me. It seemed that he had unlimited patience and that he was waiting for me to reach out to him, and only then would he step forward, though there was a hunger in his eyes for me. I was afraid of him and the darkness and the isolation that we were in together ... and then another being, a bigger being stepped between us. This was God. I knew it, though nothing was said. He had his back to me, but I knew this being was gentle, and although no words were actually spoken some words did move in the air, and they were 'Not tonight.' Although Death was standing there patiently waiting for God to step aside, God's patience was/is infinite, and with the words of 'Not tonight' slipping like silk through the air, Death eventually turned and walked away. From then on my fear for that night left me, even though the battle for breath continued.

It's not easy to see, but there can be beauty in the darkness.

Saturday, 10 May 2008

Splat alert

I think the big splat is very nearly upon me. I get the feeling that I'm not going to last much longer and will be in hospital within the next 24 to 48 hours. This is not a good feeling. I've had the most horrendous night for various reasons so I'm exhausted to start with. All I can do is hope that I have the energy to get through the fast-approaching crisis when it comes.

I hate this. I know it's nearly here. I know I have the fight for my life nearly upon me yet again. I know I have to summon a mass of energy I don't feel I have from somewhere. I could cry ... but I won't, because I need to preserve what energy I have and I know that if I let the tears come then the upset will only speed things up and worsen the situation. I hate this.

Thursday, 8 May 2008

Don't try this at home

Before I get started on what I actually want to write about this evening, I thought I'd just give you a progress report. Basically I'm still going downhill and I don't think it'll be long before I'm in hospital, but for now I'm still at home and getting tired and frustrated.

Now then ...

As a severe asthmatic whose often in hospital I'm frequently offered friendly pieces of 'advice' on how my asthma might be cured. Now my consultant is rather knowledgeable about asthma, seeing as he writes the national treatment guidelines for asthma, so what I want to know is if these things that are suggested are really that wonderful, why on earth doesn't my doctor tell me about them? The answer: These so-called cures are a load of rubbish! One of the big give aways is the word 'cure' itself, as there is no cure for asthma. The other give away is that some of the suggestions are just plain weird and wacky. Here are some that I've come across (only a few of them have been suggested to me, others are things I've heard be suggested to other asthmatics or have read about):

1. Live at sea. Not by the sea, but at sea.
2. Inhale hydrogen peroxide.
3. Play the violin.
4. Have seven sessions of head and face massage.
5. Eat pink marshmallows.
6. Drink organic cranberry juice.
7. Sit in front of a 125 watt infrared light (with an aluminium shade).
8. Omit sugar from your diet.
9. Drink two tablespoons of apple cider vinegar four times a day.
10. Drink a small glass of warm/hot water mixed with cayenne pepper, followed by lots of cold water. [Oh, now why would you need the cold water!]
11. Have a cold shower everyday.
12. Inhale the smell of a freshly cut lemon, then eat a quarter of it (including the peel, pith and pips), and drink a glass of water.
13. Live your life wearing a dust mask.
14. Chew on dehydrated dog poo!!!

I don't think I'll be giving any of them a go any time soon, and I don't recommend it to anyone else either.

Any more for any more?

Friday, 2 May 2008

Still here

Despite my week-long absence I'm still here and still at home. My lungs are still pretty grumpy and my Peak Flow (a measure of how much air you can breathe out) is making a steady bid for the floor. This evening it read 150 after my nebuliser (I didn't bother before hand, because I knew it was rubbish, and I decided that saving my breath for breathing was a better plan than puffing it out into a tube that was going to indicate what I already knew). It should be around 450, though I haven't seen this for years, and these days my very best is 350, though I more usually live around 250 on an average kind of day. This link shows you a tiny graph showing normal Peak Flow (PEF) values if you're interested, and you can download a bigger version if you're really interested. You can also get a predicted PEF for your gender, height and age if you click on the long red button immediately underneath the graph if you want to. Anyway, if you can see this tiny graph you might be able to work out that the chart actually starts at 300, so I generally live at values off the bottom of the scale of the chart, although the peak flow meters themselves start at 60. This may seem an extremely low point to start, given the predicted normal values, and it is, but when I'm seriously ill I often don't manage to reach 60 on the PEF meter. This is not a situation I recommend being in at any time in your life, and it certainly doesn't feel good. Don't try it if you can help it.

So yes, I'm surviving and I'm still at home, though I am struggling somewhat and I'm still waiting for 'the big splat' to arrive, which I'm sure it will at some point. However, I have an essay to get done for my OU course by next Thursday so I'm damned if I'm going to land in hospital before that's out of the way, because I'm determined to do my best on this course, even if it is affected by rubbish lungs. It's actually pretty difficult to concentrate on poetry analysis (especially when you don't really know what you're doing and the course material is of little help with it) when you can't breathe all that well, and my tutor has given me an extension if I need it, but I'm hoping not to use it.

I had a hard day yesterday with not feeling terribly well. There was the on-going battle in the breathing department, but I was also incredibly tired. I didn't manage to get myself out of bed until about 1pm, and then I fell asleep on the sofa at around 4pm for 3 - 31/2 hours. When I woke up from that I appeared to be having some kind of low-grade allergic reaction to something, and found that my face was all swollen, blotchy and very itchy. I have no idea what the allergen was, and this is a bit of a worry, though I suppose it's just an indicator that my whole system is on high alert at the moment. Well the reaction didn't go down, even after plenty of anti-histamines, but my breathing wasn't in any more trouble and there was no swelling in my mouth, so no need to use my EpiPen. In the end I went to bed and hoped that it would've settled by the morning. It hadn't, but after an increase in my steroid medication and another whopping great dose of anti-histamines later, it did eventually go down by this afternoon. All very mysterious, and as I say, a little concerning as I have no clue what it was a reaction to ... unless there's been a sudden increase in pollen and I'm being hyper-responsive to it ... hmmm.

So that's what I've been up to recently, which amounts to not very much. At least I'm still at home for now though.