take one woman with low self esteem, but quite good hair
add one moronic illness
stir in some medication which causes hair to fall out
mix it all up and this is what you get...

Friday, March 30, 2007


This post is going to be a bit of a cliché, and for that I apologise in advance. But the thing about clichés is that they have become so for good reason.

You see, I have discovered that having a serious illness can be extraordinarily life-affirming.

After over two weeks of hospitalisation, as I walked in the front door to the house which in truth I've struggled to really love, I suddenly felt incredibly glad and relieved to be "home", yes, home. The first couple of days were punctuated with bursts of unprompted, mixed emotions - tears of relief, tears of joy, tears of mild hysteria.

"I was really ill, wasn't I?"
"I was so scared - I still am, sometimes..."
"I was worried about you..."
"I'm home, I'm actually home!"
"It's so good to have you home,"

The simple feel of the sun on my face and the fresh air in my hair as I sat in the garden on my first day home, even though the glare made me squint and caused my eyes to water, was utter bliss. Smiling, I drank in the smell of freshly cut grass as I read my book, the regular chirrups of the garden birds providing a peaceful background soundtrack. A simple cup of tea tasted like pure nectar from the gods. I would find myself laughing to myself, tears brewing in my eyes, tears of happiness.

Every plate of food makes me roll my eyes with pleasure, everything tastes delectable . Of course, this is helped by the steroids which have given me an almost insatiable appetite, but I'm going with the flow, for now. My body needs and loves food at the moment and I won't stand in its way.

The feel of being in a comfortable, king size bed in the quiet of night with a warm presence beside me, always there for the numerous occasions when I wake up (steroids, again).

I have already acknowledged my need for simplicity in life and this recent episode has only served to increase this need.

Love, simple food, birds singing, cups of tea, hot cross buns, English gardens.

Life is good.
I'm feeling better every day.

Wednesday, March 28, 2007

Hospital survival guide 

Essential kit

  1. Ear plugs. If you can tolerate them (I know some can't), they are a godsend, especially if you're out on the main ward (as I was for a few nights) or if your side room is right next to the (very noisy, particularly at handover time) nurses' station (as mine was). One morning, the auxiliary who was trying to take my blood pressure stood at my bedside calling my name for several minutes before giving up - I was out for the count and couldn't hear a thing. They didn't want to touch me in case it alarmed me.

  2. Personal stereo. Lose yourself in your music, drown out the coughing, spluttering, moaning and vomiting - just remember your charger!

  3. Mobile phone. Luckily, because of the lamentable lack of patient facilities on our ward, they were quite relaxed about using mobiles and texting was my lifeline. Looking forward to a nice, juicy bill this month, though, as my usual 250 texts per month will not have covered it... Again, make sure you have your charger!

Things you only do in hospital
  1. Puzzles. Thanks to my visitors, I've quite a collection of dedicated puzzle books and they really help to pass the time when you're having plasma exchange therapy, let me tell you! Favourites were crosswords, Sudoku and Logic Problems. Those left well alone were join the dots and spot the difference!

  2. Use (unused) sick bowls to store fruit, condiments and other small items on table trolley thing.

  3. Receive a gift of "York Fruits"

  4. Read. And read. And read. Okay, so lots of people read anyway, but in normal life, I only tend to think of reading when I get into bed and this usually coincides with my wanting to go to sleep. It normally takes me weeks to get through a single book. I read about five while I was in hospital. I particularly enjoyed this

If you didn't know I was in hospital, see post below...

Monday, March 26, 2007

An unexpected interlude 

I've been away for a while, haven't I? Not like me at all, not to keep in touch. Bad me. But this hiatus wasn't one of the usual blog-based hissy fits I have been known to indulge in, ah no; this time I think you'll find I do have quite a good excuse.

For the past two and a half weeks, I've been away from home, in a purpose-built, residential facility. I had all my meals brought to my en-suite room and a variety of expert staff at my disposal. Despite a plethora of high-tech facilities and treatments available on site, all of which were free, I might add, there was unfortunately no internet access.

You see, on 8th March, I was admitted to hospital.

Acute. Renal. Failure.

On 9th March, a biopsy of my kidney and further blood tests revealed that I was suffering from an auto-immune disease where my body suddenly decided, for no good reason, to attack its own blood vessels - in my case, within the kidneys. We do not know what triggered it. It can happen to anyone of any age and any lifestyle.

My blood and urine became a source of fascination, each being monitored on a daily basis. I have been undergoing intensive, aggressive treatment (plasma exchange therapy, dialysis and a cocktail of of powerful medication) designed to make my body "forget" the mess it has got itself into. We do not yet know whether my kidneys will make a full recovery or whether I might require dialysis in the future to help them to do their job.

So, just over two weeks ago, I thought I had flu which I just couldn't throw off. I listened to my body and it told me something wasn't right. Luckily, my GP also listened, took me seriously and insisted on the blood test which was to reveal the frankly terrifying truth.

Acute. Renal. Failure.

Sounds so dramatic, doesn't it? The reality was not so. I just felt awful. Nausea and lethargy were my main complaints. No pain. I was peeing normally, though the colour was ... ahem... unusual. I lost my appetite and, whilst at home, was existing on a slice of bread and a few cups of water and herbal tea per day. No pain, just misery.

Once in hospital, though, I began to feel better, although my kidney function was worsening at first. I started wanting to eat, then I started eating - obviously, once the dependable morning nausea had abated. It was as if I'd handed responsibility for my health over to someone else and I didn't have to worry any more. There was a name for my condition and a tried and tested treatment and someone was going to look after me. A kind of relief. The first few days were a whirlwind of activity - biopsies, lines being inserted into necks, plasma being exchanged. I really didn't feel so bad any more.

Then there was the slump - the treatment was taking a long time to get ahold of the disease, the kidneys worsened a little - I would need dialysis to help... Suddenly, it became a bit too real and a bit too scary. After over a week of being brave, I spent a day just sobbing on my hospital bed. The roller coaster of treatment had stopped and I felt neglected. The nausea was back and I wasn't sleeping at night. That was rock bottom. A super efficient sister took me under her wing, got my medication changed so I could sleep and not feel sick every night and got control of my care plan. Within the next few days, I could feel the changes in myself and these were reflected in the all-important blood results. My kidneys were getting better, the treatments were working and finally, yesterday, I was allowed to go home.

It's not over, of course. I am still on high-dose steroids and cytotoxic drugs and will be for some time. I will be monitored in clinic on a regular basis - I am still ill, my kidney function is still not normal.

But I am home. I am loving food again. I am feeling much better.

This has been scary and life-changing and there is much more to say about it. But let this be a start.

Sunday, March 25, 2007


Been away
I'm okay
Lots to tell... will tell all soon.

Monday, March 12, 2007

Apologies for the inconwenience 

I'm sorry, but *cough, mutter* err, Anx can't come to the blog right now, but she will get back to you as soon as she can.

Posted by Big

Monday, March 05, 2007

I have a kidney infection!!! 

The doctor described my urine as "extraordinary"!

She barely needed to dip her testing stick into my proffered cup of urine. All talk of flu and pregnancy was forgotten and antibiotics are now coming to my rescue.

It almost feels like a victory. I was beginning to wonder if I was imagining how bad I felt, wondering if I was just being lazy. Flu, schmu, I thought, I'm perpetuating my feelings of lethargy by pandering to them.

But now I know I've got a proper thing - a thing which can be treated!

I'm so excited, I might go and have a marmite sandwich...