Reading through my archive you would notice a distinct lack of links. The reason for this is because websites rarely seem to stay forever. So either I just do long rambly descriptions of the link I would have given you or I reproduce the content [citing credit of course].

So today, when I introduce you to the Spoon Theory, I could tell you to go visit But you don’t look sick . com but if you’re reading this in 2010 and the website is long gone you’d miss out right?

Instead, I am hosting the Spoon Theory PDF myself here, download in 2010 and beyond with confidence.

Christine explained what it is to be sick so very well. My example? Showers. I love showers, I showered every day from the time I was eight. Now I find showers very tiring. I put them off for two or three days if I can. Washing my hair, shaving, soaping up – all of it, I have to stop and rest several times. I usually end up with a coughing fit and sometimes I have days like Wednesday when I vomit from coughing so much; even in the shower.

Everything I used to do automatically has to be thought about and planned for. I don’t think I’ll ever stop missing my healthy life. I am grateful that I made the most of it when I had it though. I spent a lot of years mistreating my body and not understanding it. Once I started working with it and respecting it things got so amazing. I don’t know what my new normal will be, I probably won’t know for at least another six months, but I hope that I am able to throw myself into it as wholly as I used to.

I am so out of practice with doing anything I have no idea how I’ll react. Horatio and I planning for me to visit him next month and it has become very big very quickly. I haven’t been on a train since last September. I haven’t travelled deaf before. My theory is that I will have to pay for the luxury of travelling the next day so I plan to go up on a Thursday so I can spend Friday resting.

I got another letter from the benefits people – our first lot of money will be in our account in the next five days. This is such a relief. Weasel nipped next door after our walk today and got the e-mail address of the cleaners they use. Hopefully we’ll get them in for a few hours each week and we’ll get the gardener back and I can relax and be happy.

Weasel told me that we couldn’t pay for her computer with a credit card so she used the debit card. We’ve paid for the computer and for our plane tickets to the US and we didn’t go into the red at all. We didn’t have to touch the savings account. This is very good news. We haven’t spent money on anything frivolous in months – in fact today was really our first time, we got Domino’s. After so much happy good stuff and the vouchers I got the other day we decided to treat ourselves.

I finally got official notice that my company is being liquidated. It makes me sad more than anything. There was potential, but it just felt like they were trying so hard to be unconventional that they didn’t have any solid business processes to rely on so they lost everything. I say they, but really it comes down to Ralph not being a business man and ultimately that inexperience had a price. They did make it eight years though which is more than a lot of small businesses.

I was not impressed with the way I left, illness isn’t the way I would have wanted to go. Now eight months later I’m no longer employed. I won’t have a job to go back to if I can work again, I’ll have to start over.

I started working there when I was 19, it was my first and only proper job. I don’t know what I think about any of this and I don’t know what I’m going to do with myself.

I mentioned my old journal entries a few days and talked about putting them up here. I was re-reading March 1999 a bit today – that was when Weasel and I met for the first time in person. I sound so young. I’m still not sure what I want to do with my archive. It raises some questions that I’m not entirely sure I can answer.

I took my bucket with me to hospital. I couldn’t trust myself not to vomit while coughing. Bah.

So I kept telling Weasel, ‘I has a bucket.’ Then I’d have Fergus say it too. He comes with me to all my appointments.

Weasel was playing with her DS while we were waiting and I liked to put Fergus’s nose on the screen and say ‘woof’. It worked really well for me.

The good news is that vasculitis people are pleased with my treatment and I can continue as I am. I see them again on the 27th, same day as chest doctor for convenience.

I didn’t sleep very well last night, the coughing needed me to be awake to enjoy it fully.

I feel crafty because when I had to get pre-checked for admission this one time I got pointed to another room in which to get blood tests taken. The regular old out-patient blood testing room is always crowded and I’d usually wait at least 30 minutes for my turn. But this other room usually only has four or five other people max. When I got there today there was only one other couple and they didn’t take a number so I got to go right in. Awesome.

Got two very nice things in the post today:

• News that I am entitled to incapacity benefit and it would be starting soon!
• Many, many vouchers for Domino’s!

The two could be related. Okay, not really. Benefit will be very useful to help with the house and garden. It will also help us breathe easier with day-to-day stuff like food.

Also discovered there is a Disable Person’s Rail Card which I am entitled to now since I’m all deaf and stuff. I’d rather have my hearing.

Today’s puppy at Daily Puppy was Raro the Boxer. He has this photo which I had to caption. For the record, I didn’t know how to spell flower in the proper way so after discussing with Weasel I decided to just go with correct spelling.

Raro has his flower and I have my bucket. We’re doing good.

I’ve been thinking a lot about my obituary I am supposed to write for counselling and I haven’t done it because frankly, it is depressing. Weasel said I should do it anyway since it’ll illustrate how I’m feeling. I think about my life and I cannot remember the majority of my childhood [I blame the medications I had as a teenager]. What I do remember seems to be more bleak than anything. I think I’ve had five good years out of 27. I never felt like I was excellent at anything, I’m a study in mediocrity. I don’t have much to show for my life. And now that I’ve been interrupted getting my oomph back is proving difficult.

We got to the hospital at 6:55am which meant that I was second in line. I had a private room this time which was a very nice surprise. I answered all sorts of questions and got poked and prodded then we waited. I finally got to go at 9.

I woke up at 12 and had a very nasty coughing fit. My head was killing me and I was not a happy bunny. Thankfully they figured out that I would be better sitting up. I had lovely oxygen and managed to fall asleep around 1 until 2.

I had something to drink and I found out that my pulse was very fast [130 minimum] and they wanted to keep me there until it came down. I had ECG – normal. So I got to do things like look at the pictures on on the ceiling. One of them featured bunnies dressed as bees. I also had to pee. I got a bedpan. It was complicated and I’m very grateful I’ve never had to use one before and I hope I don’t have to again.

I asked them to tell Weasel what was happening so she didn’t worry. I finally got back to my room around 3:30. I got to see a few more doctors. I finally got the okay to eat at 6. They said all had gone well so I could go home, I didn’t have to stay over night.

Later Weasel told me that the high pulse was a reaction to the anaesthetic.

I had a very nice nurse, when he found out Weasel was my wife he totally opened up because we were his people. He told us he was engaged to a nice man with a 10 year age gap between them. He was 19. He wanted to know how long Weasel and I had been together and said we seemed like a great couple.

I’ve put the medical stuff up on my illness page.

If you can’t be bothered to click, the short version is that my hearing loss is permanent. The airway widening went well I have 8-10mm now up from 2.5mm.

I keep going up and down about my hearing. I think mostly I’m just relieved to know where I am. I know all hope is not lost, there are a lot of good groups for deaf and hard of hearing people. Weasel and I are going to learn sign language. Horatio’s step-mum knows sign language and has access to lots of resources so she is going to get all sorts of things to me.

I’ve been coughing a lot. One doctor said this was because the underused airways that were inaccessible before are now being used again and they’re adjusting. Unfortunately when I cough bad enough I vomit so I’ve been carrying my bucket around with me and trying not to move too much.

Oddly I feel like I’m special now. Like just being ill wasn’t enough. Now I have something concrete. I’m not sure what this feeling is or what it means, I just know it is there.

This new normal stuff is harder than I thought it would be.

I am scared. I am excited. I am nervous. I am nauseous. I am coughing more than usual. My head hurts from frowning.

I cannot seem to distract myself.

Right now I am dizzy with potential. Tomorrow could fix so much if I land on the right side of the statistic fence. I am fairly confident I will be able to hear by this time tomorrow. Maybe not perfectly, we won’t know until it happens. But it will definitely be better than it is now. I am also fairly confident that I will be able to breathe a little easier and cough a little less. The question on that front is how long will I be able to; anywhere from three days to six weeks seems to be possible in others.

Things will be better. I just have to keep focusing on that. Right now is less desirable than 24-hours from now.

I’ve started a list of things to take with me. At the moment I’m going to sleep around midnight and waking at 10. When I wake up I don’t feel like eating until lunch time. So I’m going to ask them to not wake me up for breakfast and see how I get on. If I cannot sleep I’ll be okay, I’m taking the Nintendo DS with me. I’ve also got both my MP3 players.

I just hate the hospital so much. I’m not used to being around that many people. The routine that I don’t fit bothers me. The way my room-mates watch me. I know that this time will be easier than the last. So I have to focus on that.

I’ve been thinking about putting my archives up. I like the idea of having that part of me available at this moment in time. I will be re-reading each entry before it goes up again so I will know what is in it. I cannot decide if I want to put in each individual entry or if I want to have one page for each year. The idea is still percolating.

Then there’s the question of all my paper journals. I got my first one when I was six and that book is a hoot.

Guess I’ll see you all on Wednesday when I’m home and hopefully breathing and hearing.

I’m giddy with excitement! The Eurovision Song Contest is tonight! Oh joy, oh rapture!!!

You non-Europeans have no idea what you’re missing!

I went to check the start time [8pm BBC One!] and I discovered that they have a scorecard! I don’t have to write my own notes in an unofficial way! They also have an I-SPY game. Fun fun fun.

Weasel and I plan to make pizza and snuggle up to partake of the glory together. Good times. Will report back later tonight/tomorrow.

Those of you who missed the excitement of yesterday’s Debbie update [including comments], suggest you go back one and re-read. After Jummy’s comment I realised I needed to expand somewhat so I did.

Last night I listened to Depeche Mode 101 and afterwards decided I needed some Black Celebration it was only then that I realised I hadn’t ripped all our Depeche Mode CDs. We were missing five of them! I remembered why though, my sister told me which albums she had and I ripped the ones she didn’t so I could send her copies. Then I assumed that I had all of them. To be fair, I have 63 albums and 496 tracks now – so I wouldn’t have thought 58 was an unreasonable album amount. I’ve found that my music tastes have completely regressed. I’m craving the familiar.

It is mostly Depeche Mode with mid- to late-90s. Gusgus, Cibo Matto… I cannot wait until surgery to hear things again. I’m curious if I end up with sleeping troubles again, I used to have trouble with noise.

I got a text yesterday from Eleanor, the company has gone into voluntary liquidation. I have no idea what that means to me. I’m waiting for Ralph to let me know officially. I’m also not sure what this means to my benefit applications… Guess I’ll find out soon enough. I’m not going to start worrying about it until after my surgery. I’m not sure why Eleanor knew, she was asked to resign in a rather illegal way. I did see this coming so I’m not too surprised. I’m just glad Alex got out before it went. Will have to contact Robin and see what she knows.

Weasel and I spent an hour scrubbing bathroom tiles this morning. They’re bastards and we hate them. We managed to get the ones over the bathtub done so we can use the shower again. I’m going to do the other two walls over the course of this week. Then we can move everything back in again and we’ll have the shiniest bathroom. For a while anyway. I’ve noticed that things don’t stay clean after I’ve cleaned them. Very strange.

Eurovision Update!
I’m disappointed that Russia won – it was not a good song. And the ice skater was an interesting touch, but my comment was ‘he is no Jimmy MacElroy‘. I gave them 10 points out of 48. I gave Serbia 48 so voted for them, but I didn’t expect a win because they won last year. My second choice was Greece, and when it became clear that it really was between them and Russia I switched alliance. I was disappointed with Georgia’s considering how excellent their entry was last year.

I was saddened that we only got 14 points [three way tie for last place!]. It was a political loss, our song was not bad compared to recent years. We should have done better, but we’ve managed to piss off a good chunk of mainland Europe. Doesn’t help that the Baltic countries and the Bloc countries always vote for each other regardless of the song. Ah well, it is all part of the joy.

My comment on Romania man’s hair, ‘beaver pelt’. Anyway, the rest of my results:

I admit I am looking forward to next year, Russia should be a good host. I’ve seen enough Greek events really, so I’ll be happy in that regard.

Good night all!

I hate the news.

I hate reading about so many awful, preventable things that happen because some ass hat in some government or other couldn’t be bothered to think logically.

The latest one? The fact that there are 13 million children [and lord knows how many adults] without enough food in the US yet they insist on continuing the myth that obesity rates are rising and we’re all going to die.

Obesity rates haven’t changed in nearly 10 years. There is no proof that obesity causes any diseases or makes any disease worse – in fact most evidence is to the contrary with fat providing some sort of protection.

The rates for measuring obesity are outdated and not taking into account our healthier diets and ready access to most foods. Marks & Spencer re-did their sizing charts a few years ago, the reason was because they were still using sizing charts from the 1950s. This was immediately after the Second World War, people had their ration cards until 1954. Basically a whole society that was underfed and so of course they were slimmer, of course they were shorter.

Why spend so much time and money on fighting an invisible non-existent monster while millions of people suffer needlessly?

How do the people creating this fake ‘war on fat’ sleep at night? Don’t they feel sick? I feel sick just reading about it. I’m also so incredibly angry I brought on a coughing fit.

I’m angry because I read all of this and I want to do something to help. Do something to instigate change. But I have no idea what to do. I don’t even have the energy to do anything.

So I prefer to not follow the news. Impotent rage does not help me.

Now that that is out of my system, let’s move on… My ENT pre-assessment went well. Looks like all is okay for surgery next Tuesday. They didn’t want to look in my ears, they just wanted to ask all sorts of questions that I’ve answered in the past. I’m still all over the place emotionally. One minute I’m excited and I want to fast forward; the next I’m panicking and scared. I prefer having potential to no hope, and I won’t know which one I have until after the surgery.

The nice man who came round to paint the bathroom finished up today. It is stunning. It looks like new again. We’re also having a go at washing the blind, if it doesn’t work we’ll buy a new one. Because the shower curtains were down I had to have a bath this morning. I don’t like baths for washing in, they’re okay to soak in with a book. I think it was harder than showers too, I was very tired at the end. But that might just be because I woke up too early again today.

God is there anything more tedious for me to write about?

My socks! Many of them are developing holes that I’ll get to repair soon. Good times.

I hate my limbo life.

Edited to add
After Jummy’s comment I felt I should expand.

I left out some things I think. As long as you are behaving normally – i.e. eating a wide variety of foods and moving at least a little every day you will be whatever size it is that you are supposed to be.

Some of us are bigger, some of us are smaller and it is all okay.

I have a variety of studies I can provide links to and I will once I have them in a presentable order.

Some starting points Junkfood Science and a New York Times article.

More links!
Overweight and obese people with coronary artery disease have a lower mortality rate than normal weight people.
Obesity an advantage in dialysis patients
Essay on fat by Malcolm Kendrick, MD

There are so many more links. The more I read the more impotent rage I get so I’m going to stop there.

One other thing to keep in mind – most of these studies define overweight and obese using Body Mass Index [BMI]. BMI is complete nonsense! It doesn’t take into account frame size or build. This page will tell you that a woman should have 18-25% body fat, when I was tested I had 26%. At the time my BMI was 29 or 30. I was very athletic at the time [and only stopped because I was ill] and I have a large frame. I wear a size seven shoe for example, other women I know who are my height wear a size five. My hands are the same size as my wife’s and she’s seven inches taller than me.

The thing that drives me batty about all of this is governments trying to treat us as a series of numbers instead of people. I thank god that my WG doctors didn’t treat me like a number – on paper I didn’t have WG. It was only the experience and knowledge of my doctor that got me a diagnosis and treatment.

I think I ought to make it clear as well, I am not pro-obesity or pro-normal weight. I am pro-people. I want people to be happy and healthy. I want them to have access to enough food and I want them to have the chance to work their bodies. I want them to have a normal relationship with food. Why are there so many people who won’t eat a god-damn cupcake on someone’s birthday. Eating one cupcake won’t hurt you. I want people to live. Having that taken away from me has only highlighted how precious it is.