Friday, November 04, 2005

ICD-10, G93.3

In recent weeks I have become anxious about where my health is going. This is an almost inevitable consequence of relapse, but there are other factors involved such as the fact that it is now approaching three years since the major relapse which marked a sudden yet so far permanent deterioration in my health. And I don’t know what that means. Seems I’ve spent the last three years waiting to return to the level I was before and it ain't happened.

And it is going to sound really pathetic, but I’m dreading my twenty-fifth birthday next month. During the first few years of illness, birthdays were a time for despair because it was another year which I felt I had missed out on, time was passing without my actually progressing through life. And sixteen, seventeen, eighteen; important years, supposedly. I then managed to shake this off and have been fine since, but twenty-five!

I suppose the truth is that I always held up twenty-five as an age by which all this must be resolved; everything would be sorted by then, had to be sorted. If nothing else, I would grow out of it. And also twenty-five is a terribly grand age when I have achieved precisely nothing in my life so far and have never had a job. Well, apart from writing for Ouch, which I did all of once and won’t be allowed to do again. And then there’s the small matter of the three GCSEs… three… no A-Levels or degree. Just three incy-wincy teeny-weeny GCSEs. Three, I tell you.

I also comforted myself at my eighteenth and twenty-first birthday that come my twenty-fifth I’d be able to go out and get pissed with my mates and make up for the lack of celebration on these more significant dates. In fact, even if I am fully over this blip back to the levels of the summer, I shall still be worse come this birthday than I was at either my eighteenth or twenty-first.

I went to the doctors on Monday. In the waiting room there was a small child dressed as a pumpkin - I wanted to say to its anxious looking father, “You realise it is just a costume, don’t you? Your child hasn’t really turned into a pumpkin.” It had been a tremendous effort to get there and somehow I felt short-changed, even though my pain-relief was upped. But basically there is nothing he can do.

And this, together with concern from my folks manifesting itself in a renewed level of interest and various weird and wonderful suggestions, has got me researching my condition again. Just to see if there’s anything I am missing. Just to see if there’s anything happened in the years since my last serious look. Well of course there have been new bits and bobs but I don’t see how they could be put to good use. There are however some bits of information which I really should avoid on a bad day but can’t very well help tripping over on the Internet. There’s:
  1. Personal accounts from people who somehow got this diagnosis but got better through the power of prayer, sticking raw carrots in every orifice or some such nonsense. The heart sinks. Especially as some of these people are so evangelical about it; if you don’t have faith, they you can’t really want to improve.

  2. In-fighting between people with this condition, about the name of the thing, subgroups, the cause of the thing, treatment regimes, prognoses, all sorts of crap. I am really not taking well to conflict just now. There are some people who just thrive on the idea they are being held down and misunderstood.

  3. Mortality rates and specifically, accounts about people who have died from my condition. All the time I'm fighting a constant succession of minor infections, usually two or three at the same time, but I am never seriously ill with any of them and in time they all pass. But eventually some people have their immune system completely overwhelmed, minor infections become major infections; organs fail – like AIDS death, basically. A small proportion, ten percent and even then, well, much later on I should think. But I don’t want to think about it and I suppose I would rather not know about it. At least not when things are going badly. My life is in no danger just now, I mean not nearly. I might as well be considering how my childlessness and early menarche heighten my risk of breast cancer.

  4. Poetry. Any kind of poetry about illness.

    Oh woe is me!
    Life is unfair!
    I have [insert condition]
    And nobody cares.
    I’m so very very ill
    I can barely even walk
    I want to kill (myself)
    With a plastic fork.

    For some reason I always think of that great First World War hero, Lord Flashheart who said “Just because I can give multiple orgasms to the furniture just by sitting on it, doesn't mean that I'm not sick of this damn war: the blood, the noise, the endless poetry.”
Ho hum. So anyway, I got to the end of this exercise with the sense that nothing has changed and nothing is likely to change any time soon - there is an imminent revolution in the way my condition is diagnosed - a single blood-test as opposed to a lengthy process of elimination - but that's not really my issue.

At school my nickname was Neil because I was tall, had long brown hair and sat around cross-legged, rattling on about peace and harmony. Today I fear I am living up to it in other ways. "I might as well be a Leonard Cohen record." Sorry guys.


marmiteboy said...

Dear Goldfish,

What are you saying sorry for? You have every right to feel pissed off and shit. You have been ill for more than 9 years. Some people of my acquaintence make more fuss when they get a bloody cold than you do. If one of 'em makes a fuss again I'm going to show them one of my mates blogs, yours, or Lady B's or Fang's or Wildchilds and so on and tell them to have a fucking moan then about something inconsequential.

I know how it feels to see no light at the end of the tunnel and I wouldn't wish it on anybody cos it is shit. And we do all need to have a good wallow now and again but we shouldn't wallow on our own. Doing your blog in such an open and honest manner can only help you in my opinion because you are sharing it with people who care about your wellbeing.

It must be hard looking at websites and seeing all this evangilistic stuff about cures when you feel you are standing still with your condition but each person has a different experience with it and so you can't really draw on their experience when researching your own. Your time might very well come when you start to feel better and eventually recover. I'm not going to tell you to have faith because that's an easy way out. I've been 'healed' by well meaning people in my absence and when it had no effect I was then told it's because I had no faith. A total cop out that one.

What I will say though is never give up. ou owe it to yourself more than anyone not to. So what if you've haven't got a degree or haven't worked and so on. You are an intelligent, articulate and talented writer who obviously has a great artistic flair. You cannot and never will be able to take that away from you. It's yours for keeps. You've written a book for starters. How many people with degrees have that in them? Not many I can tell you.

Your health is the most important thing in the long run, not exams or jobs and so forth, and although I do realise they are important to you please don't think it reflects badly on you because you haven't acheived these things. It doesn't at all.

You are always the first to offer a word of comfort or advice to all of us when we are going through pain or are feeling down. You give us all a great deal.

Keeping on keeping on.

Take care

Marmite x

The Goldfish said...

Thanks Marmite, you are very kind. I knew you would empathise with my misery at missing out on a trip to Ikea. ;-)

And I suppose in truth this week I am doing a bit better - I have been certain been rambling on plenty on here and my need to sleep has much reduced.

Your support is very much appreciated.

marmiteboy said...

That's no problem at all. Glad you're feeling a bit better.

Anonymous said...

I think that it is the repetitive nature of chronic illness that makes it so soul-destroying. Most of us be resilient about one or a dozen setbacks but when it goes on and on and on it wears away at your courage. Of which you have plenty, but no-one can keep their head held high and not be afraid of the dark, all the time.

You have the gift of self-expression, a small mercy but thine own. Writing it out helps to move the experience from the subjective into the objective, which is the first stage in holding on. Then communicating that unique experience to others, which is your reward and contribution in life.

Life is not an accountant's balance-sheet of achievements to be ticked off. The hand you have been dealt hasn't so far included a job or a University education, but it may yet do so. I won't patronise you by saying that your job is to be Goldfish, but in a sense, that is what it is.

Mind over matter "cures". Well, if it was that simple, we'd all be doing it. Hang in there, girl.

I understand your dislike of whining poetry but try this for size. The imagery, to me, transcends the pain.

In Time of Pestilence

Thomas Nashe (1567–1601)

ADIEU, farewell earth’s bliss!
This world uncertain is:
Fond are life’s lustful joys,
Death proves them all but toys.
None from his darts can fly;
I am sick, I must die—
Lord, have mercy on us!

Rich men, trust not in wealth,
Gold cannot buy you health;
Physic himself must fade;
All things to end are made;
The plague full swift goes by;
I am sick, I must die—
Lord, have mercy on us!

Beauty is but a flower
Which wrinkles will devour;
Brightness falls from the air;
Queens have died young and fair;
Dust hath closed Helen’s eye;
I am sick, I must die—
Lord, have mercy on us!

Strength stoops unto the grave,
Worms feed on Hector brave;
Swords may not fight with fate;
Earth still holds ope her gate;
Come, come! the bells do cry;
I am sick, I must die—
Lord, have mercy on us!

Wit with his wantonness
Tasteth death’s bitterness;
Hell’s executioner
Hath no ears for to hear
What vain art can reply:
I am sick, I must die—
Lord, have mercy on us!

Haste therefore each degree
To welcome destiny;
Heaven is our heritage,
Earth but a player’s stage.
Mount we unto the sky;
I am sick, I must die—
Lord, have mercy on us!

pete said...

Hi Goldfish,
I spent half an hour leafing thru' an IKEA catalogue looking for furniture item ICD-10, G93.3.

I found it. it read Deborah: Caring, sharing and warm item that would brighten up anybodys life. Like mine;-)

The Goldfish said...

Thanks Charles. You're very kind and I don't think that counts as "whining poetry"; it is great. Tudor Radiohead - in a good way. Thank you. And I hope that was a simple copy and paste job and you didn't have to type it up yourself.

Thank you too Pete. I shall amend my own Ikea catalogue with that entry and can turn to it when times are rough. Something tells me I don't come in flat-pack. ;-)

w1ld child said...

Being 25 isn't too bad, felt kind of weird last Sunday when I finally turned a quarter of a century old. Which sounds older 25, or quarter of a century? I've been asked my age a few times this week and as it's only been 6 days I've had to think about it every time. I went to the docs last Monday and when I went to the chemist to pick up my prescription I almost put my date of birth in the date space. doh!