Saturday, May 28, 2005

Feeling better *cough*

Last night I developed a cough and didn’t sleep well, but one or other of these factors mean that today I feel miles better than I have in ages. Adrenaline or a good hard kick up my immune system or whatever means that although my throat hurts and my glands are like golf balls, I am (relatively) on top of the world. Yesterday was dreadful. How do I qualify dreadful? Well, I got to the point when I kept bursting into tears because everything hurt so much and I felt so sick and tired (as in sick and also tired as opposed to fed up – although I was that too). Plus when I’m more ill, the codeine’s effects become more profound, I get more confused, vision blurs or bends (as in you watch your hand move one piece on the chessboard but a moment later you realised you moved the one next to it) and for the last few days I have been experiencing things that are not really happening.

I have a history of this sort of thing when I have been very ill before or reacting badly to drugs; this is not a road I want to go down. Fortunately, these things at the moment are just random, like coming into a room and smelling something that I can’t smell. Like cigarettes and coffee, when nobody smokes in the house and nobody has been drinking coffee. Or smelly feet where there are no smelly feet, smelly shoes or camembert anywhere to be found. Or feeling a breeze on my face when all the windows are shut and I know for sure I’m not in a draft. I'm having loads of these every day, but it’s not screwing me up too badly; these experiences aren’t associated with any fear; I just experience it, consider it odd, try to explain it, fail to explain it and move on. I’m only afraid about where this leads, like I say.

I expect it leads nowhere. Although I have been struggling to cope with this latest downer, I don’t think I’m depressed and so long as I’m treading water, I don’t expect to have any complex or negative hallucinations. I know I’m going to feel better soon. And of course today I do feel much better. Plus even though I’ve been laid up, it’s not like I’ve been unable to use my computer or talk on the phone – at least some of the time. And I managed the cinema on Tuesday; that was significant. Unfortunately my miserable brain thinks that I went to the
cinema weeks ago and I haven’t been able to do anything for months on end.

I can’t remember having a cough before – not one independent of a cold. It is quite easy to deal with. It hurts, but pain is relative and relative to what else is going on, this is not painful at all. And of course unlike with a cold I can breath easily and my taste-buds still work. I am very cheerful about this cough.

So all in all I am feeling good.


Sorry, I just lost yesterday's post entirely - sorry. It was about Star Wars. Sorry. I'm going go lie down in a darkened room...

Monday, May 23, 2005

It really is back this time

Felt a bit better towards the end of yesterday and this morning I woke up and within an hour or so I was able to confirm that my brain is most definitely functioning, the pain is tolerable. I actually feel like I'm on planet Earth for the first time in about ten days.

I'm writing and it's going well, but since I've been such a miserable sod (and I have been very miserable) I thought I ought to share the great news. I really am over the moon to be able to have clear thoughts again. I can cope with anything if I can just think clearly.

Strangely enough, the only thing that has coincided with this rather dramatic improvement in cognitive function is that I forgot to take my Ibuprofen with tea last night. I know it's called "Brufen Retard" but I thought that was to do with the sustained release nature of the tablets. And I thought they made me brighter, by reducing the swelling in my brain... There may be nothing in this at all of course. I wish I wasn't compelled to analyse why things get better or worse.

Mini Rally

I am feeling absolutely dreadful today, but I was cheered up when the Mini Rally came past outside. They do this every year; I'm not sure where they come from and where they are going to. There was a red one and a camoflauge one and a black one flying the Jolly Roger from either wing-mirror and there was a red on and a turquoise one and a red one with stripes and a purple one and another plainish red one and a really knackered looked forest green one and another red one this time with white stripes and then another red one with a correctly coloured Union Jack on and a silver one with a black and white chequer-board on the roof and then another red one with stripes and a bright Barbie pink one and another red one. Then my legs gave way and by the time I got up they were gone. They were going very fast.

The best Mini I ever saw, which I didn't see today was an ivory or at least off-white one with a monochrome Union Jack on the roof - extremely moddish and groovy.

This was the highlight of my day.

Saturday, May 21, 2005

The return of the brain... maybe.

Well I’m feeling much better today, even though I had a night of truly horrible dreams. They were so vivid. I dreamt that my nearly-but-not-quite brother-in-law died. My sister is always going on about the young man’s bodily functions (at twenty-six her top three favourite words remain guff, windipop and wobblebottom – not sure about the order), and when in this dream she broke the news to me she said, “He was very ill, and all of a sudden he farted, rolled over and died. But that’s the way he would have wanted it to be.”

Unfortunately, this didn’t strike me as a strange or funny thing to say at all in my dream; it was just awful, I felt terrible and I woke up feeling sick with the shock of the news. I then wasn’t sure whether some of it was true, whether or not Adrian’s life was really in danger just now or whether that was a dream as well. When I went back to sleep my dreams were less traumatic, but still pretty bad. Dreams about drowning, getting into wrestling matches with people twice my size, this sort of thing.

My brain seems to be present and correct today, but I’m being very easily distracted. Ho hum. I will try and do something useful before the day is out.

Friday, May 20, 2005

Poetry Corner: I just want my body to work

Following Ode to My TENS Machine you might have imagined that I was too nice to subject you to further angst-ridden poetry, but you were wrong. Funnily enough, I can only write poetry when my brain isn't good for anything else. This is because I only ever write very bad poetry. I know it's bad but it is an expression, an expression of something inside me and as such, I need someone to express it to. That's where you come in.

Actually to be honest, I have had a crap few days but just now I feel like I may be turning the corner. I think Kerry's comment about the painkiller's knocking one out (somewhere below) is a good one; I started my new regime just before I went away and it's only now that I've tried to sit down and work on this volume of codeine - I hadn't thought about that before. So I'm kind of hoping this is a contributing factor and I've not had a more significant downturn in my health.

Question is where I go from here, if in order to be comfortable I must tolerate this level of dopiness. And dear reader, in order to see your friend and blogger comfortable, can you tolerate this sort of nonsense?

I just want my body to work.

Some girls are ugly and some girls are fair,
With radiant faces and lustrous hair,
What have I got? Well I don’t really care:
I just want my body to work

I don’t need to be pretty (and witty and gay),
I don’t need my hairstyle to hold through the day,
And everything else, well it’s really okay,
I just want my body to work.

I cannot eat less or spend hours at the gym,
But that is just fine; I don’t need to be slim,
Though it would be nice to have functioning limbs
I just want my body to work.

I don’t need a lotion to smooth out the lines,
I don’t need a potion to lift my behind,
And as for these spots, well I don’t really mind,
I just want my body to work.

I don’t need bigger bosoms or poutier lips,
I don’t need inch-long red nails at my fingertips
I don’t need firmer thighs or symmetrical bits
I just want my body to work.

I don’t need to tan, tint, to blend or to bleach
I don’t want to take my clothes off on the beach,
Thus I don’t need my arse to resemble a peach,
I just want my body to work.

Some girls have it all; brains, beauty and luck,
I’m no cover-girl; I’m more ‘cover-up’,
But frankly my dear, I don’t give a fuck:
I just want my body to work.

Thursday, May 19, 2005

How I feel today

I have been sitting at my computer for the last hour unable to achieve anything, so I decided to express myself in Paint (the program; on canvas I am much better). This is how I feel today. It's not a million miles off the way I look today. We're supposed to be going out this evening, any hot make-up tips?

Despair and Inspiration

First of all the despair. Having written what I did about the pain being under control, last night was a really rough one. Then Andy came back home from the pub with really good news about a friend of ours, a very hard-working lad who despite having left school at sixteen and having gone through many trials, has now at my age landed himself a place studying History at York (not sure whether it’s York or York St. Johns, but either way this is fantastic news for him). Unfortunately, this sent me over the edge and I cried. I supposed in part out of joy for my friend but mostly pure envy. It’s not bloody fair.

I almost feel that I am cursed, but I know this would be a big mistake. I have always felt that it is up to me to find my own way out of the unsatisfactory situation I find myself in. It’s not my fault I’m ill, but it’s up to me whether I let this ruin my life. Unfortunately just how much responsibility I have is unclear. Maybe I am not trying hard enough. Maybe I am pushing too hard. Either way, after nine years, I’ve not got very far.

Or have I? It’s not nine years of nothing. I have been working hard all along, to get some GCSEs (three of them took me four years effectivity), then my Open University courses, plus running an online support group at one point, travelling round the country visiting those less mobile than myself, maintaining something that vaguely resembles a social life. Plus all my craft projects, learning to play the guitar etc. And there’s the book, which is almost done. Almost but I still have a shitload to do on it before I’m happy.

But it’s not beyond the realms of possibility than nine years later I won’t have got much further.

And then there’s the whole jealousy of youth thing which I have described before. I don’t worry about my time running out; in my experience, life gets slightly easier with every year we age, just because we come steadily better equipped (until ultimately I guess, we are ready to cope with dying). But it’s just that I don’t have a lot of fun. Well, in fairness I do – you must excuse the nature of my despair, which is contradictory – but my having fun is often by myself, or perhaps with one or two other people and is never outrageous. Outrageousness – that’s what I yearn for. I really am talking out of my arse today, sorry.

Anyway, the inspiration. A few weeks ago a lady called Abigail Witchalls was walking with her baby in a quiet English village when a total stranger came along and stabbed her in the neck. She was declared to be dead on arrival at hospital before someone noticed some sign of life and she’s now conscious and regaining feeling. It’s been a big news story here because it was so shocking; unprovoked attack, rural setting. And she’s also an attractive lady with a cute bairn.

Anyway, the inspirational bit is this article about her husband’s statement. The headline is Abigail feels no anger and that in itself, the fact her husband Benoit says, “It's someone that's probably suffered in their lives and we've just got to see what we can as a society do to help them.” is pretty remarkable.

However, the bit of particular interest to me is when he says,

“We feel very lucky and very blessed because she is fully present as herself... it's a great joy. I think I've had a crash course in spinal injury, and you just can't tell anything for the first month so it's a case of wait and see really, but she's still got her smile which is very comforting to see.

“You can see in her face when she sees Joseph - the reason that the first word that she mouthed was 'happy' was because she was so relieved that he came out of it unscathed, physically.

“It may well be that she's going to be paralysed from the neck down for life but people live wonderful lives paralysed from the neck down. Our expectations have had to change drastically in the last three weeks, but that's not to say that we're not still going to live peaceful lives, with a family."

While I was down south my Mum and I had an argument because she said that in many ways it would have been better if the guy who did this had finished her off. Forgive my Mum, she is the sort of person who, having developed a sprained ankle on a walk in the park, would probably insist her party left her behind to the mercy of the elements and the ravenous ducks.

Although I am not one of these people that get sucked into news stories, I was really happy to read this because I was so expecting to read about how her life had been totally destroyed. Benoit Witchalls even says,

"You know life is just a lottery and this could so easily have happened, as it does to so many people, through a car accident or through some sort of illness."

I’m not for a moment imagining that these guys don’t have a very long road ahead of them and I very much hope and pray than the lady recovers a lot feeling and movement than she already has, but I was very moved by this. Frankly, I have so much less to deal with than a loss such as that, but the fact that it is possible to have such a positive attitude to such loss makes me feel a little more able to cope with my own.

Wednesday, May 18, 2005

My brain doesn't work

My brain is rather like my computer just now: about six or seven windows open and totally unable to concentrate resources on any given task. Even my dreams are chaotic, although it’s all life and death and high drama. It’s so frustrating. When I got home I had been itching to get on with my work, but nothing has happened since I got back, I just can’t put my mind to anything. And if I do nothing, I just drift in and out of unrefreshing sleep. Ho hum. Anyway, thus no blog entries.

Still I seem to have got the pain under control and the side effects of the painkillers; I seem to have established a happy balance. I am just disappointed to find that, now it's under control, pain isn't my only problem by a long shot.

Monday, May 16, 2005

I'm back!

We got home on Friday and today I’m gradually returning to the land of the living. It all seemed to catch up with me yesterday, but today I’m feeling fairly funky. I hope you are all well. A friend complained of e-mail bouncing from my address, so if you've experienced this I'm sorry, I have no idea what went wrong there.

The funeral went well. The priest gave Andrew the theological status of a child, which means he goes straight to heaven, no questions asked. There was a veritable nebula of incense, my sister sang Panis Angelicus and In Paradisum and a solemn time was had by all.

And it was good to see all my family. The Kelly family I always feel quite comfortable around. My maternal family are more problematic. For example, we visited my uncle, aunt and young cousin. I haven’t seen them in at least a year. My folks who came with us aren’t exactly popping in all the time since they are a full hour’s drive away. Now granted we were only there an hour or so because we were on our way to visit my Granny in hospital, but when we arrived the television was on and remained so throughout our visit despite the fact that nobody was watching it. With my fatigue, I am quite sensitive with this stuff; it’s hard enough following one conversation, especially in strong Suffolk accents, let alone when you’ve got all sorts of other noise coming at you from a different direction. And yet I never feel able to ask them to turn the bloody thing off.

Anyway, my Granny did very well at the funeral. There was no anticipation that she would have made it to the funeral and to the meal afterwards, but she did and given how she’s been of late I know it must have been more than adrenaline; she must be getting better at last, which is just wonderful. She is so precious to everyone.

I learnt that my great grandmother Hilda was named after St. Hilda who founded Whitby Abbey, which is just odd. The Kellys all hail from Yorkshire and the remaining Northern contingent have sited my living in Whitby as a return to my roots, though that didn’t even vaguely occur to me when I moved here. Mind you, I have lots of roots if I think about it. There’s Irish blood and gypsy too and I’m not sure whether the Kelly is an Irish Kelly or a Scots Kelly. The gypsy bit means that there are people in Gujarat, India who may share some of my genes.

My cousin Danny, who is my age within about a week, has my Granddad’s laugh.

Apart from the obvious downer, we had a good time in Suffolk. I hardly saw a thing of my Dad, but we had lots of good times with Mum. Did some shopping, bought some knickers. Was there anything else you wanted to know?

Oh, in Bury St Edmunds park (the Abbey Gardens) we saw the world’s only internet bench. They have an ordinary wooden bench with modem sockets on the arms. Also in the Gardens was the tamest and fattest squirrel you ever met. I’m sure we saw other weird and wonderful things but I can’t recall them just now.

Tuesday, May 03, 2005

Goldfish goes cycling!

When Gloria Steinem said that “A woman needs a man like a fish needs a bicycle.” she may or may not have been aware that although having no intrinsic need for a bicycle, sometimes us fish want to have a ride.

Actually, I always enjoyed cycling when I could do it. Throughout much of my childhood the family had no car so we cycled everywhere. Then there’s the rather tragic story of how for my eighteenth birthday I asked for a brand new bicycle as a symbol of my imminent recovery – so imminent that five years later I sold it in as new condition. I had been ill for two and a half years when I turned eighteen, but I was style sailing up that infamous river in Egypt. *

Anyway, we’re staying in Suffolk and this weekend my parents, my sister Rosemary who had come up for the weekend and I went for a walk in Thetford Forest. Everyone was pretty drained what with what’s happened, but we weren’t having a very easy, relaxing walk. This may have been because:

(a) We were lost. Even R who was navigating cheerfully entertained this possibility.

(b) The advertised wheelchair accessible paths weren’t terribly wheelchair accessible.

(c) The front left castor on my chair was bent back – it’s wrecked actually. Don’t know when this happened but we’re walked some way before we noticed.

Now, my mother had earlier investigated bike hire in the forest and she, R and I decided to go for a bike ride instead. “A bike ride?!” You may well exclaim. However, in Thetford Forest you can hire – for the same cost of a normal mountain bike – this very funky looking contraption with a proper seat (as opposed to an evil bicycle seat) at the front of the bike. Think Paul Newman and Katherine Ross in Butch Cassidy and the Sundance Kid – the bit when Raindrops Keep Falling On My Head plays – except Katherine Ross is in a far less precarious position. She also has a seat belt.

My Dad had a go cycling on this thing first and did fine. My mother is a far stronger and more experienced cyclist however and because of all her engrained habits, we really struggled to get going. “Riding a bike and pushing a shopping trolley at the same time” was one description of what was involved.

It was a bank holiday weekend, so the open space in the Forest where the bike hire place was and where people have their picnics and the like was heaving. Unfortunately, Mum could only get two or three metres at a time without veering off the path. The bike was incredibly stable – you didn’t need the person on the back for the balance – but I think Mum had a strong sense that the whole thing was going to topple over and me be thrown into a nearby bush. Still, we caused much entertainment for the picnickers who sat watching, laughing and occasionally cheering when we managed to keep going straight for more than a few seconds.

Eventually Mum got the hang of it.

There was an issue with the tracks again because we had wheels either side of my seat but the cycle paths had been worn down into narrow ridges. We hired the thing for one hour and two had passed before we got back.

However, once we got going it was great fun. It was just like riding a bike except without having to move my legs! And along the way we met no less than four people who asked us about where we had got it from because their friend/ husband/ daughter was a wheelchair user and would love to come zooming round the forest with everybody else.

I think the place we hired it from (Bike Art) is exclusive to Thetford Forest although I’m sure these bikes must be available elsewhere. However, it is certainly not something I have come across before. I do have a web address for the place in Thetford if anyone’s interested.

I’m going to stay in Suffolk for an extra week so I can attend Andrew’s funeral next week. It’s going to be a Thanksgiving Mass as opposed to a Requiem Mass, thus being more a celebration of life. Whatever this means, Catholic services never fail to fill me with awe and wonder despite myself. We’re still struggling to believe what has happened.

Dad had a hospital leaflet about the thing that killed Andrew and it seems so simple. He had bad constipation – something the whole family is prone to it seems, except being less articulate (and Andrew never complained about anything, it was one of his “problems”) it got out of control and his bowel impacted. They cleared this out no problem, but in doing so disrupted the flora and fauna of the bowel, so that a certain organism which lives their happily most of the time grew into an infection. This most people survive but Andrew was unlucky enough to develop septic shock. And in twenty-four hours he was gone, just like that.

Ho hum. Thanks everybody for your kind comments – I really appreciate it and will pass these things on to my family.

* Da nile, yer know, denial, get it? Never mind.