No see of IC

This is Imposter Cat. He's a difficult subject to take a decent photo off, because he has a tendency to come out as two glowing, yellow circles near the top of a mass of indescript black, as his immense furriness hides most of his feline features. So this was the best I could do, and it was taken shortly before I went into hospital. While I was in hospital my friend J, who was feeding Zach, made an attempt at catching Imposter Cat to take him to the dog and cat shelter. He didn't manage to get hold of him and bundle him into the cat basket, but since I've been home I haven't seen IC. I've heard him sneak in through the cat-flap once or twice, but he seems to have become more nervous again and isn't hanging around. This is very good news for Zach, whose now much happier again.
...

So this is a very relaxed Zach, stretched out in front of the fire and generally looking very happy, don't you think? As I say, he's a lot more relaxed now that IC hasn't been around so much. Even when there have been the tell-tale clatterings of the cat-flap, suggesting that IC is poking his nose through the door, or trying to sneak in to steal Zach's food, Zach has regained his courage. He's rushed to the kitchen to see who the intruder is and has then seen them off, which is how it should be, but he'd got all nervy and unhappy when IC was making himself so comfortable here. I'm still not convinced we've seen the last of Imposter Cat, so I may yet have to try catching him myself to take him to the dog and cat shelter, but for now I shall enjoy having a more settled Zach again, and Zach can enjoy feeling safe and secure in his own home.

Bounce

Since the lead up to my recent hospital admission I’ve felt like I’ve lost some of my bounce. This isn’t terribly surprising, but it’s not a great feeling. I like being bouncy with energy and motivation to do things, so running short on physical and emotional energy can sometimes further contribute to a flatness.

After a period of a kind of flat, post-hospital hyperactivity (if that doesn’t sound too oxymoronic), today I’ve begun to feel a little more settled. I’m getting used to being in my own home again; I’m not quite so desperate to be out and about, using up energy and bounce that I don’t really have; and I’ve been able to settle down to a bit of reading for my course. My bounce - my natural bounce - is returning, although at the moment it’s more of an emotional bounce that I’m getting back than physical energy, but I know now that I’ll get there.

Mother Nature is also getting more bouncy, with there being signs of spring in the air :o) At last, the evenings are getting lighter – it was still light this evening at 6pm; the birds are returning and chirping away; the apple tree in my garden/patch of mud has new buds on it; the greengrocers has bedding plants for sale on the street; and the sun even has a hint of warmth in it again. All of these are positive, feel-good, bounce-inducing things ... things that make me smile and feel hope for the year ahead.

Sometimes it’s the small things that make a huge difference, and sometimes we have to slow down in order to notice the small things. Stop. Take a break. Sit and just be. Take time to let the little things become the focus of your attention. Enjoy it and don’t feel guilty about letting the world rush on around you – it’ll still be there when you go back to it, but you’ll have more bounce and energy for it.

The octophant and the elepus

When I was ill recently I had a period of 4 days and 4 ½ nights of no sleep whilst fighting for breath. This, along with starvation through sickness, is an excellent combination for becoming somewhat delirious, so I found. Now then, while I was lying/sitting there in bed I had two drips going into me and an oxygen mask that was delivering high-flow humidified oxygen. When oxygen is being humidified they have to use a different kind of tubing connecting the mask to the O2 point, so that the tube's diameter allows the passage of the water vapour through it. The tubing is about an inch wide, is stiff plastic, ribbed and called elephant tubing.

During the last ½ night of no sleep, when the lungs were finally settling a bit, but I was not very lucid due to sheer exhaustion, it suddenly occurred to me that I had a trunk and tentacles, and then I became overwhelmed by the idea that I was a hybrid of two animals. I couldn't decide whether I was an octophant or an elepus. In fact, the inability to make this decision bothered me so much that it contributed to my insomnia. In the end I worked through the dilemma logically - I counted my appendages and discovered that I didn't have quite enough to be able to consider myself and octophant, and as I'd never heard of a septaphant then I couldn't be that (don't you just love delirious logic?), hence my ultimate conclusion that I was an elepus. I'm not keen on the tentacles and the trunk, but I do like the word 'elepus' so I'm quite okay with being one. Oddly enough, once I'd settled this with myself I was finally able to sleep ... and I slept for 3 days (apparently through various spells of breathing difficulty that I was just too exhausted to wake up for).

Lent

We are almost three weeks into Lent now (the six week lead up to Easter). As my recent hospital admission began the day before Lent (Shrove Tuesday - I missed out on the pancakes too!), and I was ill at home for several days before that, I didn't have the chance to properly consider what I may give up/take up for my Lenten promise. I appear to have given up health (and sleep), which wasn't a deliberate decision and not one that I think God would be wanting me to keep to. Despite being nearly half way through Lent already, I do feel that as a Christian, I have an obligation to take up a Lenten promise, even if it's only for the remaining period. However, I'm having great difficulty in thinking what this could be, and also feel that my options are somewhat limited ... though perhaps this is a misconception. You see, I could give up something foody, as many do, but my extensive and diverse severe allergies already limit my diet, and whilst I can and do eat as healthily as possible, it is important to be able to keep a balanced diet. I'm sure there is something I could do without ... like Green and Black's 70% chocolate, but while I'm having such difficulties with the workings of my GI tract it quite probably wouldn't be good for me (by further reducing possible nourishment, which is already depleted by the nausea and pain), and also wouldn't be much of a hardship as the aforementioned nausea and pain are already reducing what I eat.

Other than giving something up for Lent, many take something up instead ... but what? My instinct - or perhaps it's a nudge from God - is that I ought to devote more time to prayer. Because I am a Christian I really should be praying everyday, but I'm ashamed to admit that I don't. I do pray frequently, but I don't have a routine in which I have a specific time that I dedicate to God.

It is quite possible that I have just found/admitted to what my Lenten promise should be.

Now as, on the whole, I don't know who reads this blog, I don't know how many of you are Christians or have any understanding of what Christianity is about other than Jesus being involved in it, and he was a good bloke who was born in a stable at Christmas and died on a cross at Easter time. Because of this, I feel that I ought to explain something of what this Lenten promise I've been talking about is for ... though I'm no religious leader and consider my faith to be relatively simple, so it's not going to be very in-depth. So here goes my attempt to explain something of this.

As a Christian I believe that Jesus was the mortal embodiment of God - God made into man to come and walk among us. This can seem a bit complicated when you also begin to consider Jesus being the son of God ... but both are right and true. Now then, in the 40 days (6 weeks) leading up to Jesus' death he had a rough and testing time, to say the least, suffering isolation; temptation by the devil to save himself and betray God; desertion and betrayal by friends (apostles); humiliation and degredation; the knowledge of his impending death (that on it's own can't have been easy); and ultimately the torture of crucifixion. Why on earth did he do this? For us, for everyone, for every single person in the world and for all of those to come. He did this so that we - all of us - could be closer to God, could be saved from sin and the devil, could be cleansed of all our wrong-doing. That is altruism beyond altruism. When Jesus died, and in the lead up to his death, he felt every single pain of the suffering we would if we were to go through it - both physical and psychological - because although he was God, he was also a man, a human. What pain, what suffering, what torture to endure.

Jesus gave up everything. Jesus gave up his life. This was for us - you and me and those before us and those who will come after us. What do we give up? Chocolate, crisps, things that are bad for us. It's no comparison, is it? We do those things in part for our own benefit and well-being, when really the history of it shows that we should either give something up that would benefit someone else (maybe by giving up our time for people in need), or that we should take up something that will reflect something of the burden that Jesus took upon himself for us, or the dedication of his love for us. Whatever we do, it should be God-centred. It should be significant. It shouldn't necessarily be for our own gain, but for the gain of others and for the rememberance of Jesus. Tough? Yes, but not as tough as what Jesus did.



I don't often write about my faith, as you will know if you've read the rest of my blog, but sometimes I have things I want to say about it. They may not always be 'right', but they are my current understandings. I make myself vulnerable to you by sharing these things with you, but I make no apology for telling you something about my beliefs - they are intrinsic to who I am and they way I try to live my life.

Absence explained

If you're a regular reader and have been missing regular new posts I'd like to apologise for my long absence. After the bad night I wrote about in my last entry I had another bad night, with the lungs and also sickness, and I ended up in hospital again. The sickness had been going on for a few days before I went in, and this meant that I couldn't keep down the medication that keeps me breathing, which is how come my lungs went splat. The sickness continued for two weeks of my hospital admission, with me unable to keep any food down and only a few of my meds from the beginning of this week. It was only on Monday or Tuesday that I started to be able to keep down food, and Thursday when I was finally able to hold onto all my meds, so it's been a long and horrible haul.

So things went really wrong on the Tuesday (I think that was 5th February). I phoned the ward I usually go to, but they had no beds. However, just from talking to me (or rather, hearing me really struggle as I tried to say single words to them) the nurse could tell that I needed help quickly and called 999 for a blue-light ambulance, but even in the time it took for the ambulance to arrive I sunk fast and was very ill by the time the paramedics arrived. I was taken to A&E where they put me on the infusion of aminophylline (the drug that usually eventually works for me) I needed, and is recommended by my consultant in a letter from him that I carry with me at all times. There is another drug that many asthmatics having a severe attack have - magnesium - but it's a sulphate and I'm allergic to sulphates so cannot have this, which rather limits what the doctors can do for me. Anyway, they started the aminophylline, kept me in resus for a couple of hours and then transferred me to the EAU's (Emergency Admissions Unit) resus at one of the other hospitals. I stayed in that ward all night, fighting for breath, being sick, unable to sleep or relax or help my desperate battle to stay alive. I was exhausted, but not quite ill enough to be ventilated on ITU. I was though transferred to the EAU's HDU (High Dependency Unit) ward, where I had another long day, long, wakeful though exhausted night, and continued battle for breath. My breathing very gradually improved from critical to bad, although the sickness continued and as I was getting quite dehydrated another infusion of fluids was started. Half way through the Thursday a bed became available at my usual ward at one of the other hospitals in the city, and I was able to be transferred.

It's always a relief to get to my usual ward - 29 - because they know me so well, know the severity and unpredictability of my asthma and what helps. This isn't to say that other hospitals/wards/doctors/nurses can't treat me as well, but if they don't know me and my lungs, there can be difficulties, and that doesn't instill confidence. Because of the terrible state that I get into with my asthma, and the terrifyingly rapid decline that can occur, doctors who don't know me often get frightened, and this was the case at the EAU. I much prefer that I'm kept in the picture and medics tell me what they're thinking, but it's hard when they tell you that they're running out of options ... very hard ... and scary. The EAU consulatant told me this, and also that he was reluctant to put me on a ventilator because he wasn't convinced I'd manage to get off it alive. I had no choice but to fight on alone. It's such hard work and so very lonely, because, despite being constantly surrounded by doctors and nurses, I'm unable to breathe enough to speak. I can't tell them I'm frightened. I daren't cry out my fear with tears as this will only make breathing harder. I don't have the breath or the energy to react to pain when they do the painful arterial blood tests that check various things including my oxygen and carbon dioxide levels. I am a thing that's there to be fixed, and at the disposal of any medic who comes along, who will do what they need to keep me alive. I know they're trying to help. I don't resent them, but I sometimes resent my situation and the isolation within the company. I know what to expect and I'm used to the routine, but I don't think I'll ever get used to the possibility of imminent death and the fight to stay alive. This is probably where my fight comes from - a refusal to accept it as normal, even though it's a frequent occurance in my life - and I am a stronger person for it, I'm sure, but I don't like it and I dread each attack as I feel it coming on.

Well, yet again despite the odds I have survived, and now I am back home. My breathing is better than it was, although not fantastic, and although I haven't been sick for several days now I still have a fair bit of nausea and some abdominal pain. I don't think I'm as 'well' as I usually am when I get out of hospital, and my consultant would've preferred it if I'd stayed in over the weekend, but having got to this stage of betterness it was agreed that I could do the rest of my recuperation at home. After all, several of the medications I take for my lungs suppress my immune system, and while hospital is a good place to be when you need it, it's not a good place to be in terms of picking up nasty bugs. The longer I stay there, the more chance there is of getting an HAI (Hospital Acquired Infection), and when I do that I tend to do it in style. I will need to take things very easy and remember that while my mind may be willing (although it's surprisingly frazzled today), my body isn't. Two weeks of not being able to eat and having only 188 calories a day dripped into your veins over 10-12 hours does nothing for your energy levels, and three weeks lying in bed does nothing for muscle tone. Needless to say, I am very feak and weeble. However, being back at home, surrounded by my own things, getting cuddles from the cat, with peace and quite rather the constant busyness of a hospital ward is all great.

The one thing I have done today, other than sofa surfing, has been to go and buy a Nintendo DS. Often when I've been in hospital I've thought that it'd be good to have some mindless distraction when I'm at the stage of being able to concentrate on anything besides breathing or sleeping, but some how I've never quite got around to treating myself to the games system that might help provide this distraction and time-passing. In anticipation of this recovery time probably being longer than average I decided to go for it ... even though I nearly passed out from the effort while I was in the shop, which was an indicator that I needed to finish my trip and get home. I've had fun this evening lying here slobbed out on the sofa, with the cat on my knee, playing various games and then spending silly amounts online buying more games, most of which should arrive next week.

Now I think it's time to head towards bed ... but quite possibly with my new Nintendo in hand, and no doubt with the cat following as he seems to have velcroed himself to me since I got home yesterday evening >^..^<

A bad night

I have had an awful night unable to breathe, and have consequently had no sleep. I'm not critical yet though so there's nothing the hospital can do for me (I'm on maximum treatment other than what's given in crisis). I've managed to beat my lungs into submission to a certain degree by (over) using my nebuliser, but from here on it's a 'wait and see' situation. Anyway, in the midst of the misery last night I decided to distract myself as much as I could with making up some limmericks. Here they are:

A Prayer

Lord, I ask for a gentle reminder.
A poke in the ribs would be kinder
When my lungs are in doubt
How to breathe in and out,
Than stuffing me whole through a grinder.


Breathing

I think that I've mastered the art.
I've learnt the rhythm by heart -
Breathe out and breathe in ...
And repeat it again ...
Oh damn! I've forgotten the start!

Egg and chips

Last month I told you about the presentation I gave at one of Newcastle's hospitals. I had said that I would post some more of the talk I gave, so here are a couple of diary extracts I read out during the presentation. They're from a few years ago and are about the experience of being told that there is no more that can be done for you medically. This extract is actually two diary entries from consecutive days, and as with the previous ones, it is written here as it is in the original, with no ammendments.

'Dr. H. came round this morning. He told me there is nothing more he can give me, nothing more he can do for me except manage my catastrophic acute attacks as they occur. He says all we can do is wait for science to catch up with my disease ... however, I may not live that long. I take in his words. I hear them and react as though he'd said we're having egg and chips for dinner, but it clatters around my head with a stark reality for the rest of the day ... and probably will for the rest of my life. This is it. This is final. This is the way things are. My asthma consultant - this regional specialist and nationaly respected figure in his field of medicine - has informed me that he cannot offer any new hope of cure or management; that although my disease is not terminal it is however fatal and may well kill me before medicine has a chance to catch up with the extreme nature of my illness.

'Dr. H. says he's sorry. He leaves the room. I take in the news that I'd known within myself for sometime but am now struck in the face by the bullet of this truth delivered to me at point blank range. There's no way I can pretend that all this hasn't just been said to me. No way I can pretend that I've been told we're having egg and chips for dinner. No, this doctor almost seems to be preparing me for the end of my life, without being able to give a timescale, as he would if my disease were terminal like cancer.

'I ask if I would be able to have a bath - be bathed. I want to scrub this information from me, even though I know I can't. The nurse can't either, but she joins me in shedding a tear because she knows me, and she cares about me, and our lives have been intertwined by this place for the past eleven years. At least I am now clean from the blood, sweat and tears of the past days' fight to survive, even if I cannot clean the newly acquired knowledge from my mind.

'The information, the shock of its stark reality, the physical exersion of being bathed is exhausting and I collapse into a brief and fitful sleep in the hope that when I wake I will discover it has all been a dream.

'I awaken. It is not a dream. This is my reality. It feels very final.'

[The following day]

'I didn't want to open my eyes on today. Not only was I extremely tired from a fitful night's light dozing, and yesterday's crying, but I also didn't want to have to face the knowledge of all of yesterday's news again. Of course, lying there trying not to remember only brought it forward in my mind, and before long I was picking up where I'd left off in the night - wrapped in stunned tears.

'S (SpR) came round late this morning. I put back on my 'egg and chips for dinner' persona and asked him if I really heard what I thought I heard Dr. H. say yesterday. He knelt beside me and said that he was sorry and that I had heard correctly. My voice cracked a little as I said, 'I knew it really. I was clutching at straws ... It's hard.' He looked at his hands. He looked me in the eye. He said 'sorry' again, and said, 'Yes, it is hard.' Scrambled egg and chips. I know S away from this place - he goes to my church. Because of the doctor/patient relationship we sometimes have to have here, we haven't sought each other out as great friends at church. However, he knows me and I know him, and we are loosely involved in each others lives in a place beyond hospital and illness. I see he really is sorry ... and I'm sorry too.

'The rest of today has been a blur of visitors and imparting my new information to them. I don't have any platitudes for myself so I can't give any to my friends. I tell it how it is, unable to look after them with my news and they sit there as quiet and unmoving as I was yesterday when I was told. I see the information seep into their consciousness and they understand that although I knew it before yesterday's words had been spoken, the imparting of the news by the consultant somehow makes it more final ... more true ... undeniable.

'We prayed a short while and then R pulled the children's poetry book 'Please Mrs. Butler' from her bag and made us smile a little in this newly confirmed chapter of my life.'