Weasel and I were talking the other day about the recent refinery worker’s strike. The knock on effect is that the oil stops pumping, petrol becomes scarce, prices sky-rocket and everyone dies.

Initially, I thought, no big deal, we don’t drive and we have several shops within walking distance. Then Weasel wisely pointed out that the shops wouldn’t be receiving more goods because there was no shipping. Then she said her main concern was our medication. Both of us would have very long, very uncomfortable deaths without our drugs.

I thought about my life when I got sick and before I diagnosis and decided that I’d rather just die and be done with it.

So when radioactive squirrels rise up and destroy all that we hold dear and the world system collapses Weasel and I will be in the kitchen breathing in the gas. She very kindly said she’d check I was gone before going herself.

I failed to elaborate on the drug organising yesterday. We’d managed to accumulate an awful lot of cold/flu/sinus medication in the last year. I was able to combine a few bottles of cough syrup, throw out some very sticky and nasty throat lozenges and organise the rest in a sensible manner. I also discovered that all of my morning drugs now fit in my pill box, very handy.

Everything I did yesterday [dishes, wiping down the kitchen, organising drugs and going for a walk] means that I am pretty tired today. I’ve still managed to make bread, do a load of laundry, post some things and do a shop run. I’ll be calling Blanket Girl shortly and that’ll be Tuesday.

One thing I’ve been doing a lot lately is playing Katamari Damacy. We got it last year and I thought it was okay, but then I got sick and I didn’t touch it for ages. It sounded fun to me the other day and now I’ve been playing a lot. I love watching my times improve and seeing how big everything can get. My current biggest was 802m. I still haven’t managed to collect 1000 cranes though. Soon.

I started having trouble falling asleep a little while ago, I’d head off as usual when I was sleepy and I’d just lie there. For an hour or two. So I decided to stay up until I was good and sleepy, this puts me in bed at 12 or 1am. Then I sleep until 10:30. I’d much rather sleep at 10 and wake up at 8:30. I’m not sure why it is bothering me so much. It isn’t like there’s a reason I can’t sleep until 10:30. I haven’t got anything that pressing to do and the hours of the day I have are still the same.

I know how to fix this, it’s forcing myself to get up earlier so I’ll be tired and sleep earlier. I’m scared to do it though because so much of my body’s rhythms have been fucked with lately and if this is working in this pattern I don’t want to break it again. I’m not used to treating me with concern and wanting what’s best.

I met a puppy at the park yesterday. His legs were too long for his body and he was so happy to see me [aka anyone]. I got all kinds of love as he went by. There was another doggy that was bounding through grass that was taller than he was. I could hear the cartoon soundtrack in my head.

I don’t have any doctor’s appointments this week. I had an ENT appointment on the 1st but we cancelled it after I saw him during my last vasculitis appointment. I’ve updated my WG page for those of you who are interested – click The Illness on the right.

The paint in our bathroom has been falling off for ages. We had a house inspection a couple of weeks ago and today a guy came to get a quote for re-painting everything! Yay! Cannot wait to get it all tidied up and fixed. He’s also going to fix some cracks in the walls and refit the loose tiles.

Back in the day when I would go to the gym I used to work up a sweat and have to wipe it from my eyes. It was so automatic I didn’t really notice that I did it. Today I decided to organise all the drugs in the house. We have had a bit of an influx recently as I went from one prescription to many more. However, the kitchen was in a bit of a state and I didn’t have room to organise. So I did a pile of dishes, the kind where you have to stop and dry because you’ve run out of room on the rack. I have never been able to just do the dishes and walk away so of course I scrubbed the skin and cleaned the toaster, kettle and sandwich toaster, tidied up the side, wiped down the washing machine and the walls; it was challenging but not impossible. I ended up with sweat in my eyes and when I wiped it away the movement was so familiar… and foreign. And it felt so unbelievably good to clean.

I love cleaning. I love the instant gratification. I love that I can walk into a room and think how clean it is and love it for days afterwards.

I think part of my problem was that I used to clean, cook, workout and breathe with music. It was playing 24/7 for me. I’d listen on my bike, at work, in the kitchen, while I mowed the lawn, at the computer, tidying up, playing the piano or singing… music was there, keeping the beat and distracting me. I never had to think too much thank god.

I even used to listen to music while I slept. I still rely on The Cure’s Disintegration to lull me away sometimes. Being deaf robbed me of that and I lost my rhythm. I feel bad because I end up blocking Weasel out, but I need this right now.

… or doubling the antidepressant dose has had a positive effect.

Doodle was here tonight for musics with Weasel and South Park. Weasel abandoned us half way through one episode so I of course said to Doodle, ‘How about that local sports team?’ I listed clubs and teams in the city and then we had a rant about sports.

‘Sport is a group doing something physical’ was his opening.
‘Like an orgy?’ I asked.
I thought on it for a moment and continued, ‘I wonder if they have try outs… test you for stamina and which holes you’ll allow.’

Then I started wondering about the referees, ‘They must be very jaded.’

I totally want orgies to be a team sport.

I think I have too much time to think at the moment. Being trapped in my head by deafness and no longer distracted by constant illness issues means that I just sit in my head staring at the walls while my mind over-analyses everything.

It’s not doing me any good. I also realised that I used to shut myself up with music.

I can wear headphones, but it sort of traps me further because what little hearing I do have it taken up and I cannot interact with others. I asked for headphones with a long cord for my birthday, ones I can use at my computer so my Last.fm box will fill back up again. I’ve listened to a few things on the server, but it isn’t my computer. I love my computer. Plus I always feel a little silly using our huge flat screen TV as a monitor.

I recently acquired some Miracle Whip [drool] and so I have made many an egg salad sandwich much like the ones I enjoyed when I was four. It was the first thing I ever made by myself. One lunchtime my Mom was making it for me and I was drooling nearby and the doorbell went. She went to answer it and got to chatting. I waited as patiently as any four [five?] year old could and finally decided I’d make it myself. So I did. I’d watched her make it a hundred times, it isn’t complicated.

Anyway, the point is that my favourite food when I was four is the same favourite at 27. When I was talking with my Mom today we were talking about how I might be once I can breathe and hear and start living again. I’m scared. I’m scared that my iron self-control has lapsed and I won’t be strong enough to get it back. She says that I have always wanted to help and I’m happier doing things – I don’t like just sitting around; even when I was four. It made me feel a little better.

I’ve mentioned Junkfood Science before [I think/hope] – Sandy Szwarc basically converts many a science report into plain language and often points out that the studies that are reported to say X more often than not actually say Y. The article published yesterday, titled ‘The compassionate message was lost’ works for any disease and associated treatments. She mentions that anti-cancer drugs are often coupled with steroids and both can lead to weight gain. That’s my treatment for the Wegener’s. I don’t think I said explicitly that I was on chemo but I was – well, am. I’m on an oral one now that is less toxic than the injections I had earlier. Her point is that people who are that ill have better things to worry about than their dress size. Amen.

JFS often makes me grumpy or I despair for the human race. Will individual people ever be more important than business or money?

Weasel is going to see someone [tee hee] tomorrow so Horatio is coming to see me. I’m very excited. I feel better now than I have in six months*. I’m hoping we can inject some normalcy into our relationship. The poor boy has been very unsettled by my illness and I haven’t been equipped to reassure or examine it.

* That’s right. I finally feel a little stable and I’m leaning towards healthy/functioning. My project a day plan is proving successful. I sorted through my clothes, folded everything I was keeping and put it away, did the laundry [including carrying the basket up and down stairs!! I haven't done that in months], went for a walk, made dinner [simple chilli dogs - yum!], watched a few episodes of Ren & Stimpy, played some Katamari and spoke to my parents for two hours. I feel better now than I have in months.

Weasel and I have plans† to rearrange the library on Sunday. She wants to try having her desk in front of the window so we’re going to move a book shelf to the opposite wall and end up with more space which will hopefully mean that when the air bed is up people will be able to move around more comfortably.

† I made a plan! For a few days in advance! And I’m fairly confident I’ll be able to carry said plan out! This is exciting times for me. I’m scared to like it too much but I can’t seem to stop.

God I want to sing.

Made the best chilli I’ve ever made. My secret? I added the spices at the end, one or two at a time with a tasting after each one. I’ve made okay chillies before, with a good flavour but no heat. I’ve made chillies that were no flavour and all heat. Today I triumphed. I also thought about how the brownies I made the other day were the best I’ve made and I realised something: I’m cooking with greater attention. Because a) I haven’t cooked properly in months and b) I’m just slower these days. My hands hurt pretty much all the time so I have to think about what I’m doing much more than I ever have before.

I tidied up the dining room table in three goes.

I finally settled on Hillary and completed my voting papers. They’ll be posted tomorrow.

I watched the rain from the kitchen window. Watched a bird fluffing its feathers.

I wrote four e-mails I’d been meaning to write. I only have two left to do now. Until I clear out my in boxes and find twenty more anyway.

Spent some time mulling the counselling question. I don’t know how much of my current gruntleness is due to being ill and now that I can finally see some light at the end do I really need to go? I’ve already got the appointments and it certainly won’t hurt me to go. I used to be so decisive. This dithering is driving me mad. I want to just make a decision and know that I am capable of dealing with the consequences. When did a simple decision become so big?

Went for a lovely walk with my wife in the late afternoon sunshine. We saw many doggies in all shapes and sizes. One even barked at us because we dared to look at him from 30 feet away. Very cute.

Spent ages browsing poster sites trying to find landscapes that fit the criteria the counsellor laid out and appealed to me. I settled on the jetty at Derwent Water. Then I found it for £8.25. Sweet.

Weasel and I have recently switched to placing grocery orders every two weeks and using other places within walking distance to top-up in the interim. An order arrived today and it is like Christmas. There’s all sorts of wonderful things to look at and admire. Plans to be made for each ingredient. I’m not very good at squatting or bending over at the minute so it was all on Weasel today.

Blanket Girl sent me a birthday box which arrived this week. There was an amazing candle that had the cutest box – it looks like a little house. I kept wanting to light the candle today, but I didn’t because the whole house smelled of chilli.

Finally, Fergus makes a fine hat.

I made a list of all the things that need to be done around the house. My plan was that I’d be able to just pick one every day and gradually work up to cleanliness. Unfortunately, it has just overwhelmed me and made me miss the old me.

I never would have let the house get this messy to begin with. All of the cleaning on my list could have been done in six hours over two days and all would have been well. I cleaned after the gym on Wednesdays and on Friday mornings.

Instead now, I look at this list and realise I’m incapable of doing some of them and others will take me two days if not more. All the windows need washing and the last time I did it it took several hours and it was hard work.

It makes me sad.

Sad makes me feel listless.

Listless brings frustration.

Frustration brings anger.

Anger brings… emptiness.

I can’t be angry at anything to do with this. There was no cause, no higher purpose. It just happened and I have to live with it. The end.

Now I’m just waiting. Waiting to see if my hearing is okay. Waiting to see if my airways can successfully be widened. Waiting to see how much of my old life I can reclaim. Waiting to see if I have the strength of character to do it… waiting to see how much of me is gone forever.

Eleanor and Robin have both talked to me about work and it is not good. The office is moving on the 1st of May. I don’t now how I’m going to get to where the new offices are. I suspect it’ll be at least another two months before I can go back. My requirements were that I could breathe and hear. I don’t think that is unreasonable. It makes me sad that I just wandered away from that part of my life instead of making a decision to leave. I don’t like that I couldn’t control that part. Now I wait.

I see my GP tomorrow. I guess I’ll know where I stand with work then. I won’t get anymore statutory sick pay, so I guess I’m going on incapacity benefit. I hate feeling so useless.

I’m too ill to do the things I want to do and too well to do the things I did when I was very ill.

Nothing is charming or fun anymore.

I’ll feel better tomorrow.

I may have mentioned that steroids can make you a bit, flaky. Lately I’ve noticed word issues. I forget how to spell them and I mix them up. ‘Ancient’ I tried to spell ‘anchant’ and ‘awry’ became ‘arrye’. I was talking to my Mom yesterday and said something about ’self-deprecating’ except I actually said ’self-depreciation’. I also mixed up denial and another word which I can’t remember now.

Losing my words has been very strange.

I had a long day at the hospital yesterday, so I’ve updated my illness page with the latest. I get to have many surgeries! Good times ahead.

The good news is that my WG is officially considered to be quiet. It doesn’t feel like I hoped it would. I didn’t expect to be cured, but I guess I thought my symptoms would be gone. It makes sense logically, now that it isn’t running through my system wrecking havoc I can go and correct all the problems it created without further complications [knock on wood]. I didn’t mention on the illness page, but I do plan on having my nose fixed at some point too. I guess I thought I would be happier about this than I am.

Weasel and I were walking today and we got to talking about dogs again. We desperately want one. In the interim though she suggested that I start a dog walking service. It seems like the perfect solution. I don’t know how active I’m going to get to be in future, but I know that I can walk [sort of].

I made brownies today. With chocolate cream cheese icing. I do believe they’re the best I’ve made in a long time. My plan is to either make something or clean something every day in addition to my walk. I managed to vacuum the stairs and change the sheets last week. I just have to take lots of breaks.

One of my best friends in high school was Dustin. We don’t talk very often now but we do keep half an eye on each other. I hadn’t told him about WG and leaving work and generally being miserable because I didn’t know how to. I don’t know how to tell people that I’m sick without sounding whiny or pathetic. He sent me an e-card on my birthday so when I replied I dropped in a link to my WG page. I don’t feel happy with the way it played out, but I couldn’t figure out how better to do it. I have similar problems with other people I’ve known for years. They ask how I am and I honestly don’t know what to say. They ask what I’m up to and all I can say is being ill. I could tell them about my latest hospital visit that was exciting.

I don’t have any hobbies anymore, I’m not real anymore.

On a completely unrelated note, I like to browse my statistics to see what search terms bring people here. I remember to look probably four times a year. Anyway, I looked last week and I noticed that I have 850-1100 people visiting each month – or a minimum of 28 people visiting per day. I’m baffled because I only know about 12 of you. So now I’m wondering who the rest of you are. How about you comment and tell me how tall you are and what colour your tooth brush is. Cool, thanks.

Incidentally, it pleases me that 41% of my visitors use Firefox and only 37% use IE. Good work.

P.S. One of the best things about being able to hear in headphones at least? Insomnia by Faithless.