emerym’s Blog

Hi All,

Long time no post. I no longer suffer from KFD symptoms. Or is that just wishful thinking? I do get insane fatigue in the afternoon at times, but I’ve learnt how to deal with it and would rather not think about lupus, one of the things the doctors warned could follow..

Due to spam overload on the account linked to this blog a number of the valid comments from fellow KFD sufferers had gone overlooked for which I’m very sorry.

I will try and sift through all of the 16,500 emails over the next few days, reset the spam protection and respond where I can. I will also remove a number of unrelated posts so there’s less for people to search through.

Regards,
Mark

My daughter got a cold three weeks ago. I thought she got it from someone at school but It turns out someone in the larger family gave it to her after thinking they were better. (

This ones not your average 24 hour bug. Sitting in the lungs causing no end of coughing it wears you down. A week and a bit after Sophie got it she gave it to the rest of the family. Even super fit Laurence has started suffering from it. My wife totally lost her voice with it one day and had to stay off the phones.

I’ve had it for a week and a half now and the cough is changing. There’s less chest pain, but much more phlegm which I’m guessing is what helps make it airborne and pass it on.  Sleeping properly when coughing so much isn’t easy and as there were no signs of improvement I got fed up with it enough to visit the GP.  The Doc wrote up a prescription for antibiotics, but told me to wait until mid week before taking them in case an extra couple of days would see a change for the better.  Unless I’m suddenly better in the morning that was just wishful thinking!

A comment I got from the nurse rang a bell. She reminded me of the age old saying that I’d been told by my grandparents. It’s why I’d stayed out of the reception until the very last minute while others had sat down to cough all over each other.

“Coughs and Sneezes Spread Diseases” See the illustration by Herbert Mayo Bateman, October 1942.

So no “28 Days Later” apocalyptic monsters just yet, but I’m sure there are plenty of people ignoring it and passing it around, allowing the virus to find more hosts to try and mutate in.  Lets hope it dies off soon. I’d tried calling my team leader to say I was still out sick, turns out he’s out sick too.  I’m curious to know how many people have had this or are suffering with it now.  From the longer than normal line of people at the Doctors on Monday morning I’d guess a few.

Top Tip: If you find yourself on a train and the person sitting opposite you coughs or sneezes in your direction close your eyes for the next 30 seconds. Apparently a lot of colds get filtered out in the nose but manage to get into the blood stream via the eyes.  Also wash your hands and any fruit you might eat.

Why do I hate colds so much? Someone passed me the Epstein-Barr virus around Jan 2007. It’s though to have triggered the major problem I had with my lymph nodes and the resulting six months off sick feeling like I had the longest dose of the Flu imaginable.

If you have a cold please do the rest of the population a favour and minimise it’s spreading to others!

My sister and I got to see the Matrix films on Saturday. The IMAX format rocks!

Like the consultant my sister told me that I should go back on the medication. She thought that the pain was probably caused by something else.  I didn’t take any Saturday, by Sunday morning I felt tired but otherwise okay.  I took one Sunday night and went to bed. I wish I hadn’t.

3AM I woke with a major headache and pain in the arms again. I took some paracetamol and called NHS Direct.  I wish I’d not taken the paracetamol, it turns out I can take paracetamol and codean, which I have from when I had neck problems ages ago.  I also have other pain killers, I’m told in my condition they could have done me a lot of harm, so I’m glad I checked. As they don’t expire until 2009 I’d kept them all.  I’ve now got to wait until 8AM before I can take anything else.

Due the thumping head it’s taken me ages to put this post together but it’s now 5AM, an hour killed.  What to do for the next three hours…  I really hope the codean helps.

Pain, Pain go away, don’t come again another day.

I’m on Persantin in case my recent problems were due to a TIA. Unfortunately I’ve had a bad reaction to the medication. I’ve got a headache and severe pain in my joints and muscles in the shoulders, arms, wrists and knees.  I’ve tried to sleep it off since 21:00 but it’s now 00:30 and I’ve called the EMDoc as I desperately need some help with pain management.

Searching the web for more info on Persantin I’ve come across too much data on the elderly attempting suicide due to the reactions! I’m 42 and can take a fair bit of pain, I feel so sorry for the elderly that have this reaction, this must feel like a living hell. I’m writing this, fussing over our cat and looking at Flickr to try and take my mind off the pain while I wait for the call back from the doctor.

I was looking forward to watching all 3 of the Matrix films back to back at the IMAX in London tomorrow night with my sister. There’s no way I’m going if the pains not brought under control.

UPDATE: The doctor I talk to tells me that due to the blood thinning properties of pain killers there is nothing else I can take. Exausted I fall asleep around 3 or 4 AM.

Long time no post.

Yesterday I had a secaceous cyst removed from my scalp at the local hospital. I’d had it for a few years but for whatever reason it had been growing a lot since the Kikuchi and needed removing. Anyone else seen side effects like this?

Thanks to Mr Desai and his team it was removed quickly and cleanly. I’ll look a mess on Monday as I can’t wash my hair for a couple of days.

The nurse responsible for my primary care on the ward, Julia Goodall, was a breath of fresh air. Very down to earth and talkative. As well as doing her day job she helps support women who’ve been diagnosed with breast cancer. I gave her details of one of the many people I’ve come to know through my health issues. Dr Karen Lowton, sis, if you’re reading this, can I introduce you? I’ll call you Sunday… )

She thought I looked tired, that maybe I wasn’t getting enough sleep, wasn’t getting quality sleep or had too much stress in my life. Hmmm. Here I am writing a post at 03:30 Sunday morning as someones woken me up. Again.

Incase I had stress she told me about the Reflective technique to deal with any issues in my head. It sounds interesting. It’s like a diary, but a lot more personal and in the moment. Like filling a page with the F*** word if you’re angry about something that’s happened. When you’re in a better mood you then look back through the pages and reflect on how you felt, why you felt like it and what you’d do differently a second time around.

In the past month I’d started getting tired in the afternoons again. Friday 16th May 2008 17:11, after a pleasant day working from home, my body gave me a major hint that all was not well.

I’ve been having a large number of tests since; xrays, bloods (Tony Hancock would have called it “an arm full”), CT and three MRI scans, and have more to come over the following week and hopefully will have some answers soon.

I’m trying to stay positive about the whole thing. I’m still here, still kicking. But I’ve had two strikes and I’m not going to allow a third. In the words of Cypress Hill – I ain’t going out like that.