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

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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!

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.

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.

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.

“You cannot manage what you cannot measure.”
Bill Hewlett (Cofounder Hewlett Packard)

I’ve been watching the sky for the past few weeks, today was bright enough to start my hours power walking again.  I think I’ll be taking a tripod some mornings, the early morning sky can be a beautiful thing to start the day with.

image_084.jpg

http://picasaweb.google.com/emerym.42/Photomatix

Peter explained that it’s the toxic byproducts from digesting some foods that have probably been causing me problems.  It sounds like this may have been building up for many years.  The body wraps these toxins in fat and deposits them in a number of locations, for example around the eyes.  I’ve got a batch of tests pending to back up the conclusions drawn so far and check some other potential problem areas.

Peter also said that I’d have to eat some more of the problem foods to prove that the improvements were down to their absence from my diet and not other factors. Once all of the problems were known my diet would be reconstructed.  With that in mind, when my wife offered me some soup that evening that contained 8% potato I ate it. The next day I felt like rubbish.  I wasn’t as bad as before, but it wasn’t a good creative day either.

While waiting for an evening conference call on Tuesday I had a search on the web for a more definitive list of the foods in the group.  To my surprise I’d been eating more items from the group than I’d previously thought.  Summarizing what I’ve found on Wikipedia and other sites:

“The highly toxic and hallucinogenic belladonna, also known as deadly nightshade has a few close cousins in it’s Solanaceae family: The Jimson weed, mandrake, tomato, tomatillo, tobacco, bell peppers, potato, eggplant, petunia and capsicum (paprika, chile pepper)”

Up until the diet change tomato, potato and paprika or chile pepper were regularly part of my evening meals.  At the team dinner that evening the roast potatoes remained on the plate.

My advice to others with long term fatigue? See a Nutritionist before you see your GP!

I’d like to get all the people who say food has no impact on fatigue on one side of a room, the ones that accept it can on another and a pile of cream pies on a table in the middle. I’d get out of their way and let the fun begin, everyone needs a good laugh every now and then.

Then there’s the fight within.

I’ve been talking to Peter Cox, he’s a Nutritionist. I have known issues with caffeine, aspirin and Edam cheese, the cheese and aspirin problem goes back 30 years. It turns out aspirin is in the same food group as tomatoes, potatoes, chilli, aubergines and capsicums. My wife and I were cooking with at least one, but normally two, sometimes three of these every day. Apparently it’s possible to have a reaction to food as long as 72 hours after ingestion, by which time it’s off your list of possible causes. As the reaction isn’t sudden and severe enough to make you realise it’s food you and any doctors you consult look to other causes.

“Food is only fuel ” I was told by one of them. But I’m realising that for me it has to be some of the many right kinds of food, and none of the bad foods. Fill your petrol tank with diesel and how far do you get off the forecourt? Not far. What if the mix was 80% petrol? Maybe the engine runs but not at full performance. It looks like my body’s been fighting against these foods for some years with energy from good food being expended to fight the bad. If your body’s a temple mine’s been a battle ground, eventually getting so worn out that combined with some stress I’d become open to the virus that triggered the disease of the lymph nodes and everything that followed.

I’ve been off those foods for a couple of weeks now. Through a lack of cereal in the house I’ve also not had cows milk. I’ve also been eating foods spread out during the day to see how I react to them. Pink Lady apples are now on my list too, although I’m fine with many others.

The last few days have been so much better. I still get a bit tired in the afternoons but not as bad as before and the mental fog has reduced. At last I think I’ve turned a corner and see daylight at the end of the tunnel.

The change in diet combined with all the walking I do has had other unexpected benefits too. My sinuses are not as bad and my weight has dropped to 13 stone 3 and the wife can see signs of a six pack. I’ve not been this light in 26 years!

Getting Sophie to Maidstone for her performance at the Hazlitt Theatre looked like it could quickly become a nightmare. It was a mad rush to get to Bromley South as usual, having just missed the proper bus by seconds. On getting to the station we find there is no train to Maidstone East. We’d been lucky so far, we’ll be thinking about engineering works in future.

On the station platform a confused Chinese lady asks me how to get to Ashford International. English is obviously a problem for her so I draw pictures with a train, bus, arrows and station names. I get a lovely smile and “Thanks!”

She’s got two very large heavy bags with her so I help get them onto the train. At Maidstone I help her gets both bags up and down the stairs to the car park for the bus. One is so heavy she could only have dragged it.

I ask when the bus will depart and arrive in Maidstone. Depart 12:10 and arrive around 13:10, they only do the run once an hour. That would give Sophie less than 20 mins to get to the theatre and change ready for curtain up. I ask about local cabs and their charges. “Don’t worry papa” Sophie says, “I’ll just have to get ready quickly”. The Metro Bus supervisor makes comments about what he’d do if he had a single decker to hand.

He thinks the Chinese lady, Sophie and I are together. It’s an easy mistake to make as Sophie has some Chinese in her from her mothers side. He asks where the three of us are going, I point out that we’re not together, the lady needs to get to Ashford International.

He goes to the car park then returns moments later to say “If you could get on that bus” pointing to a double decker with “Not in service” showing. Other passengers ask if they can get on to which he replies “No, that’s your bus” pointing to the one that will depart in 25 minutes.

Sophie and I have a private double decker non-stop all the way from Sevenoaks to Maidstone East! Rest assured I will find some way to repay their kindness. The staff from Metro Bus saved the day!

The Win2K version of iTunes was downloaded and installed. On plugging in the iPod I’m greated by a message saying that a newer version is needed, which of course doesn’t support Win2k. Bother. I eventually get it working on the one XP desktop we have in the office. I gave up trying it on her XP laptop with its USB 1.0. Time to buy a load of RAM and plan some more XP upgrades.

My daughter had an iTunes gift voucher. Easy to turn into music, a video or game, right? Wrong. To create an account to redeem a voucher you need to enter credit card details! Children should be able to create an account without one. It would also help prevent them from accessing any age restricted material. I think I’ll be getting a Pre-pay Mastercard for her iTunes use. I guess there aren’t enough children with iPods or too many are Americans with trusting parents handing over credit cards.

With everything working the 3rd gen iPod Nano is a very impressive piece of equipment. The sound is great, GUI well thought out and responsive. The 320×240 video playback is very good despite the small screen size. My daughter thinks it’s great, shame about the Windows issues. Maybe it’s time to introduce the Apple Mac to the family? That would give us “LAW”. Linux, Apple and Windows

I logged into the office remote access portal just to see how well it works over ICS with a 3G connection. The ~6MB Citrix ICA Client for Windows downloaded in a few minutes and I was soon logged in looking at a lab server. I was very surprised at how well it all worked. There was far less latency than I’d expected. It’s no wonder so many carriers are now doing 3G USB Wireless Broadband. They’ve got to recover their 3G license costs somehow, nobody’s doing video calls.

My daughter is appearing in Panto this year at the Hazlett theater in Maidstone. Today is one of the few remaining rehearsals. With only hourly trains and a 70 minute journey door to door there’s no way I can get home and back in time to do anything useful at home, so I’ve no option but to wait it out.

I walked around the shops for a bit until my fatigue started. It’s not been too bad tolday, but I don’t like being out in busy crowds feeling like the brains under-clocked. Some things work on auto-pilot, but my reactions are a lot slower. I got myself back to the theater, but as parents are not allowed in during rehearsals I have to sit in the ticket lobby of the Exchange

I brought along my old laptop to tinker with, and my daughters old MP3 player now that she’s the happy owner of a 3^rd Gen iPod Nano. I’d rather run down a AAA cell than the phone. I should have packed a good book, boy does the time drag by!

I used to have a Canon T90 but gave up on 35mm film. As I’ve yet to replace it with an EOS 30D I have to make do with “snaps” from my Canon 4MP SureShot or 2MP HTC TyTN.

One nice thing about the TyTN is that I can control the camera via MortScript to give me some exposure bracketing. The not-so-nice thing about the TyTN is that it’s exposure compensation controls don’t give you quite the results you’d expect. To the naked eye many of the shots look the same. Even so, Photomatix is able to take two or more of the images, create an HDR image and then tone compress it down to something that can be displayed or printed.

In the quick 2-image test I did tonight it’s easy to see how the colours are pulled back into the shot. It looks much closer to the real thing.

Christopher, Paul, Hamid, Phil, Andrew, Karin, Belinda, David, Jeremy and Daniel. Thank you so very much.

An equally MASSIVE THANKS! to all the friends and family who helped me through the past six months.

For the last month and a bit I’ve done an hours walking first thing in the morning, 4 days a week. Come rain or shine I’m out there powering around my seven laps, listening to tracks such as The Chemical Brothers: Galvanize, The Boxer and Believe. Doing the walking 06:00-07:00 is also a great way to see the sun rise and day starting, cloud cover permitting. Using Google Maps and a ruler it looks like I do ~ 1.5Km including the walk to the park from our house. It’s been a great help getting me back into a routine ready for my return to the office.

I’ll be back from Monday 20^th August, part time at first to prove I’m okay.

The walking has had a positive effect on my waist. I’ve had to dig out some old jeans as I’ve gone from a 38inch waist down to 33 inches. I’ve also dropped from 14 stone down to 13 stone 10.5

A good steady beat helps keep up the momentum. I’m going to have to resurrect one of my old HP Jornada’s for power walking music as my TyTN phone was declared dead on Friday morning after I’d spent hours trying to get it back to life. It’s been handed over to Vodafone for repair.

While shopping in Bromley at the Glades today I walked past a Bungee Trampoline and couldn’t resist parting with the £5 to prove to myself how much fitter I am these days. Not only could I do a 360 flip over, I managed a double-flip several times and attracted a small crowd.

Half were probably thinking “What’s that old git up to?” I don’t want to know what the other half were thinking..

That’s it for this post. Lets see how Mark 2.0 does back at the office!

“Feel the fear, do it anyway”

which I prefer to other shorter things like “Just do it” or “No Fear”. Now I’ve Googled the line I find a lot of people are using it in songs, self help books and CDs. I wonder who came up with it first?

I’ve recently finished Stephen King’s “Cell”. A very addictive book that I was given by my Mother. Thanks Mum! I read it in about a week.

I think I’ll start “Moondust: In Search of the Men Who Fell to Earth” soon.

Denise and I then got the head cold that Laurence had and swimming had to go on hold.

By July 10th I felt better and took Sophie swimming with me. I managed a few of my “Matrix Moment” laps underwater (“You think that’s air your breathing?”) in the hour we were there. A few strong surface swimmers saw what I’d achieved and tried it themselves. The furtherest they could get was 3/4 of the length. My swimming style under water is more relaxed, almost whale like and burns oxygen slower. The other swimmers are too aggressive, trying to use their surface style and run out of air too quickly. The faster you go the less chance you have of getting to the other end.

Towards the end of the swimming my neck and throat were tightening up, which was rather disappointing.  Thanks to the recent help I’ve been getting I’m feeling much better, in the week that’s passed I’ve only had the problem a few times and with less severity.  I can also manage an hours power walking (0600 start, part of my recovery program) and have a much more positive mindset – People saying I won’t be back for months doesn’t bother me anymore (partly due me thinking they’re wrong, my recovery is better than they realize, partly my acceptance that I have a few more trips to the specialist to make before I’m given the all-clear to return to the office). My wages dropping is just an annoying event that will be dealt with if and when it happens. As it probably will I’ve taken steps to reduce it’s impact.

Steve in NY had made the comment that he hoped things returned to better than normal. I’d like to think he’s right, what I hope people will see when I return is Mark 2.0, a Marked improvement on the old version.

The remaining problem with the shoulders, neck and throat have all been put down to the same cause by three doctors. What I hope will be my final set of treatment starts Monday 10AM in London. At the moment I’ve no idea how many times I’ll need to see the specialist and how long it will all take to resolve. Hopefully it will move along as quickly as the days when lymphoma was first suspected.

I hope to start my return to office after the first couple of treatments, interleaving any further treatment with trips to the office.

It’s been a couple of weeks now since I had bad fatigue. Last Thursday I had to take a nap for a couple of hours as I felt extremely tired and couldn’t fight it any more, but there was no aching or pain with it and I’ve only reached for the tablets a couple of times since due to headaches.

As my strength has been steadily coming back I’m going to start some gentle swimming tomorrow. I was talking to someone about swimming last weekend when one of their kids piped up saying “It’s good for the body and soul!”. Such young words of wisdom