Remember back when Google Reader allowed you to share items within Reader? Remember how awesome that was? Then they launched Google+ and it was supposed to be epic and better? And it so wasn’t. It was worse. Then they did the real name policy and suddenly people were getting banned and leaving. I’ve been sharing my Reader items there for a few months and I don’t like it. I did some digging and found a button to share to Tumblr from Reader and so I’ve moved over there. Follow with RSS or visit amyezekiel.tumblr.com – thank you!

My scooter and I got trapped in the snow last week and yesterday I finally had the chance to read the manual and figure it out. The circuit breaker tripped and so I reset it and ta-da! scooter works again. I took it today to my final laser hair removal appointment and the grocery store. Very lucky to have it.

Horatio and I had a lovely weekend with rather less video games and more TV shows. Really enjoying Alcatraz and we’re nearly done with season three of Alias. We made epic veggie burgers on Saturday, used a bagel as the bun and it was wonderful. On Friday my travels were made of fail. We were expecting rather a lot of snow, so I got a very early taxi [30 minutes early]. I’d arranged for assistance with getting on and off the train as I was in my wheelchair and my hoof is broken. I got to the kiosk and no one was around, so I wheeled over to someone to let them know I was there. On learning what train I was on, he suggested I get a direct service to my connecting station that was leaving then. I said my ticket wasn’t valid and he insisted so off I went. He said he’d call ahead to let people know I was coming. We arrived, the doors opened and no one was there to help. I stuck my good foot in the door to stop it closing and finally the train guard spotted me and got the ramp. I alighted and went to my next platform where I now had to wait an hour. My next train was running approximately 20 minutes late, we got moving only to stop shortly after. The conductor announced that there was a train on fire at the next station so we were queuing.

After 30 minutes we got moving again, then he announced that our train was running so late that they decided to cancel it. We all had to get off at the next stop. Thankfully, someone was waiting for me there. She told me to go to platform 4 and she’d come help me board the new train. I left and waited. There was another train for my destination on platform 5 and my assistance had disappeared so the conductor of platform 5 train got the ramp and off we went. It was a small local train stopping at the little stations, so it was a little adventure. Finally arrived at my destination an hour late.

The hearing in my left ear hasn’t been as awesome lately and the hearing in my right seems more awesome so I decided I needed another hearing test and maybe a hearing aid adjustment. I called to book an appointment and they seemed extraordinarily reluctant to give me one. I could understand if I’d been there every week for a year bothering them, but I haven’t had a test since 2009. She suggested it could be wax, I know my ears very well, if it were wax I’d get my ears cleaned. She wanted me to go to the hearing aid repair clinic first then be referred to the audiologists. My aids are fine, no change, its my ears that have changed. Grumble. Got there in the end, but it was difficult.

My foot is improving every day. I love being able to sleep without the boot. I can walk with a fairly ungainly lurch, without crutches. The pain is mild and controlled with ibuprofen. I miss going for walks and exercise in general.

While I was trying to understand Tumblr I had a look at Neil Gaiman’s. He has planned a Valentine’s Day surprise for his wife, Amanda Palmer. Apparently, they’ve only spent one V-Day together during their relationship and he is missing her. His surprise has been to publish details of where Amanda will be tonight after a gig and asked people to show up and blend in with the crowd. Then when Amanda arrives, they’re to greet her and then kiss her and tell her it is from Neil. I read it this morning and I tried to just let it go, but I’m really, really creeped out. I keep imagining myself in Amanda’s shoes and I do not like it. She has no consent here. If she doesn’t like the first kiss and leaves, she’s a bad sport. If she stays she is going to end up being kissed by 5-50 [Neil's numbers] strangers – in proxy of her husband. I can only hope that Neil and Amanda have discussed this sort of scenario before and she’s expressed delight. I’m not about to curtail someone’s kinks, but that pesky consent thing keeps popping up. I’m going to keep trying to let it go.

Having trouble writing now, so I’ll stop there.

One thing I wanted to talk about, when the triage nurse was admitting me last Saturday for my broken foot, she asked what my pain level was from one to 10. I said I honestly couldn’t tell her. It was no where near the most pain I’d ever had, in my brain I was thinking three maybe four. So I tried to adjust it for a ‘normal’ person and said seven.

Trying to read my pain levels is pretty much impossible now. I rarely take painkillers because they just don’t seem to work and the pain now often registers as uncomfortable rather than pain. There’s a reason my website title is Morphine Breath. I was taking 60mg of slow release tablets twice a day and every three hours I was topping up with 10ml of liquid morphine. I had to set alarms to wake me in the night to take it because if I didn’t the pain would be excruciating. After a dose once I could taste it a bit and I told Weasel I had morphine breath. The phrase amused me and here we are.

Thankfully, the my disease was put under control and the pain dropped off, but I don’t think I’ll ever be able to accurately judge my pain levels ever again. Not with those memories.

Anyway, yesterday, I went to the fracture clinic. Apparently, the A&E [Accident & Emergency, not Arts & Entertainment] people were a little a little overzealous. My ankle might be all right, the fifth metatarsal is definitely damaged, maybe just a fracture though. I had the temporary cast removed and I’ve been given a walking boot/air cast. I can put weight on my foot and I can take the boot off any time. I can sleep without it too. I had a bath when I got home and it was wonderful to feel clean again. He reckoned that I’d be better in four weeks. All round very good news.

Weasel and I finished watching Avatar: The Last Airbender last night. The ending was superb. There are spoilers ahead, so please skip the rest of this paragraph if you don’t want to know. It being aimed at children [as a show on Nickelodeon] I was reasonably certain the good team would win, but what was incredible to me was that despite my reasonably certainty I still thought they might twist it. The characters were so well developed, the timing of each final battle so precise that the possibility of failure and defeat were palatable. The moment when Aang lands on his blocked chakra and the Avatar State is activated was beautifully animated and acted. That entire fight with Lord Ozai gave me goosebumps. Azula was truly frightening in her unravelling. I was delighted with Prince [Lord!!] Zuko and how his story turned out. I could feel his goodness from the beginning, I didn’t believe his evil act. Iroh and the White Lotus taking Ba Sing Se so they could give it back. I cheered so Sokka, Toph and Suki as they battled the ships so cleverly. Watching Toph take the bridge was so fun. And finally, that wonderful, perfect kiss between Katara and Aang.

I’m still on Avatar here, but no more plot spoilers. I wrote about the diversity of the show before and I am delighted to report that it continued through to the end. My current favourite is the background crowds; there are equal numbers of men and women and they are all different sizes. I kept being surprised that there were women there. Finally, I’m so very excited about the new series [same world, 70 years later] coming later this year.

I’m off up north tomorrow for a weekend with Horatio. I was afraid I’d have to cancel because of my foot, but walking boot has saved it. I’ve arranged for help on and off the trains and I’m taking my wheelchair so I’m good to go! It’ll be nice to be somewhere without stairs. Meanwhile, the agenda is the same as usual; video games, Cribbage, Scrabble, movies and whatever TV shows appeal.

I’m really excited to leave the house actually, felt a bit trapped today.

In my efforts to be healthy despite my illness I was walking every day for 40 minutes. You may recall that I decided to add stair climbing, jumping-rope, shake weighting and ball exercises into rotation too. I did it two weeks ago, broke myself completely by overdoing it and then got a very painful ear infection.

Yesterday I finally had the chance to go it again. I did the stairs [a more sensible two minutes] and moved outside to do the jumping-rope for two minutes. I got three jumps in and landed wrong on my right foot; it rolled under and made a popping noise. I sat for a moment on the steps. Decided I couldn’t stay outside, hopped over to collect the timer and hopped inside.

I checked I could still wiggle my toes, then decided I needed to ice it. I hopped to the stairs, climbed them and crawled to the bathroom. Got an ace bandage and hopped back downstairs. Hopped to the freezer for ice, then the kitchen for a baggie. Finally got settled and wrapped it up.

I wait for a while then sent Weasel a text. She came home about an hour after I’d done it and after a brief examination she agreed it was probably broken. We headed to the hospital.

I took my wheelchair. The triage nurse took details, spotted my chair and got very confused. How on earth could someone who uses a wheelchair use a skipping rope? We were there from 5 to 8pm so between the following events, Weasel read more Moomin stories to me, I read a bit of my book and a newspaper. After a wait we saw a nurse who sent us to get an x-ray. The doctor looked at those and decided they needed a different view. More x-rays. Word came down that I’d broken the bit between the soft top muscle and my ankle bone and my fifth metatarsal. I got a temporary cast put on and an appointment for a proper one on Wednesday. I got given crutches and sent on my way. We spent another hour waiting for a taxi and got home at 9pm.

Crutches are difficult to use normally, but my lung condition has made it very challenging. Poor Weasel has become my gopher. My left foot is freaking out from the extra requirements and my other muscles are incredible sore.

Now on to other news:

• If anyone fancies a game of Words with Friends, invite me, amyezekiel.
• A snow storm happened while I was in the hospital and overnight. I tried to go to an appointment this morning and my scooter got caught in the snow. I had to crutch it back home. Appointment had to be postponed because taxis are all very busy.
• Weasel has been either working or sleeping for a couple of weeks, I missed her, but I feel that breaking my foot was a little dramatic.
• I’m fairly certain I’m going to have to cancel my visit to Horatio this weekend and that makes me sad.
• I’m not sure what to do about the hospital tomorrow, I’ll get there and see what happens. It’ll be my second rituximab infusion.
• Nan’s funeral was on the 2nd, I want to talk in more detail about it, but for now I’ll just say it was really wonderful.
• We had a wonderful family birthday/Christmas dinner on the 28th.
• I had an eye appointment, my vision and astigmatism is worse, so new glasses for me! I’ll get my current pair re-glazed after new ones arrive.
• I’m watching Lost on Lovefilm and I think I like it. It is very compelling at any rate and I’m only mildly annoyed with bits of it [like why is season three Kate suddenly crying all the time and acting so powerless when season one and two Kate was so kickass?].

I’m sorry for the gap in posting, I wasn’t going to do that any more, but it turns out that it is very hard to write when one isn’t feeling well. I liked to believe that I wasn’t writing before because I was lazy or scared. You’d think after five years of illness I’d stop being in denial about it.

My brain has been so sluggish since my infusion. I cannot get my thoughts organised into words. Also, I’m jumping topics so often I have a hard time knowing if I actually thought anything anyway.

I’ll just share a few random instead and not worry about coherency.

I was reading Yeah Flashback and they had Dum Dum suckers [lollipops]. It made me think of my childhood doctor; he had a little drawer of them in every exam room and if I did well I got one. He delivered me and I only stopped seeing him when he died [if memory serves, he might have retired and shortly after passed away].

I learnt something new this week: sugar consumption has little to do with whether one develops diabetes. I think the two became linked in my brain so long ago I hadn’t even realised I thought they were until I read studies to contrary.

Read thought-provoking article this week from Dances with Fat. The gist is: “People come in different sizes, this is the size that I come in.” The phrasing clicked with me and I’ve been pondering it ever since. I remember being in high school and sitting with my legs curled up in the chair with me, my chin resting on my knees. I remember sitting in church and leaning forward and resting my chin on my knees in the pews. I’d put the hymnal on the floor to read. I sit on my feet every day, I get uncomfortable if I can’t pull my legs up with me. I am flexible, I always have been and I use that as a way to take up less space. I dislike being the centre of attention. I have spent years swimming in shame at the amount of space I require in the world. It is only as I get older and more aware of people that I realise I don’t look that different from everyone else. I am entitled and allowed to take up the space I need.

I’m looking into another line of work. I keep trying to think of that miracle job that’s going to work with my disabilities. I was thinking it was time I started looking into a cottage for our annual holiday in October; then I thought of people who might like to find a cottage with specific needs too but no time to look. I could totally look for them. I do it now anyway. When Doodle was moving, I looked into properties that would work for him. I do it when I shop for clothes, I usually have an idea of what I want and I just have to find it. I tried to think of what this sort of service would be called. Doodle suggested personal shopper and that’s fairly accurate. I thought maybe research services. Would prefer joining and existing outfit instead of starting my own business, but I guess if it doesn’t exist I’ll have to do the latter anyway.

I’m going to go be disjointed, tired and confused somewhere else now.

I didn’t mean to not write for this long. I expected to miss the weekend because I was visiting Horatio. I thought I might write Monday night; but travel, Scrabble and plain tiredness meant I didn’t. I spent Tuesday in hospital getting my infusion.

I woke up early, I had a shower, ate breakfast and got myself put together. I walked to the hospital in the rain and arrived for 10am. They took MRSA swabs, placed a cannula and took some blood samples. I had a steroid injection and a piriton injection. Finally, the drip was started. The dose of rituximab was in a litre of fluid and they start the drip at 50ml/h. I had a mild reaction around the 100ml/h mark [started sneezing, my eyes and ears got ichy and my throat felt like it was closing off]. They left the flow slower for 20 minutes and then I felt fine so we were eventually able to reach the maximum of 250ml/h.

I finished reading The Golden City by John Twelve Hawks. I played a few games of Scrabble on my DS. When the lunch cart came round, I asked for whatever vegetarian sandwich she had. She offered the tuna. I said tuna was a fish, an animal. I ended up with watercress soup. Thankfully, I came prepared and had some peanuts & cashews and a cereal bar. I probably could have forced the issue, but I really wasn’t up to it. I used the free wi-fi on my phone and read a few feeds. At 4:15 it was done and I called a taxi.

It is incredible how tiring it can be sitting all day. My brain was sluggish. I feel like I’m still out of whack. The steroids brought insomnia as usual and yesterday I kept wanting to eat. Last night I couldn’t fall asleep until around 3am. I woke just after 9 so I’m confident I can get back to normal tonight or tomorrow.

As said, I was in Leeds last weekend, Horatio and I had one of our best weekends ever. We watched our one new episode of Castle and started watching JJ Abrams’ Alcatraz. We played a little Magic Ball and Gran Terismo on PS3. We finished season two of Alias. We had many yummy things, burgers with salad and chips, had pizza twice. Domino’s has an offer on for three small pizzas for £5.55 each. We buy three each, eat two and have the leftover one for breakfast. I took a box of fudge graham crackers and a pack cinnamon rolls to him. We played Scrabble and Cribbage. Best word for me: ‘epilate’ – very pleased.

On my journey home, I walk past two Subways. This time I decided to count my steps between: 280. Amazes me that they both manage to stay in business. I ate my breakfast pizza on the train. When I changed trains, I managed to get on the wrong one. I was waiting on the right platform, the next two trains listed would be fine for me. A train pulled up, I got on. Then I realised I was on the wrong train, thankfully, I could get off at the next station and on my correct train so no harm done. Never done anything like that before.

Two bits of random before I go. When I was cleaning out the spare bedroom in preparation for the new bed I found an ancient used condom in wardrobe. I’m certain it was there when we moved in seven years ago. I have added it to the list of strange things I’ve found left by previous tenants. In our old flat we found a pair of knickers behind a radiator, an inhaler and a photography of a woman in her underwear.

I’m subscribed to my local Groupon and recently an offer came through for Owl Hanging. There is a lovely visual there of tidying one’s owl and hanging it on rods by its feet. There’s a chance that I misread it though; owl handling experience makes a little more sense.

Yesterday morning, I sat down with my bowl of cereal and Vanity Fair [seriously, this book was my constant companion for four days]. I like my book on the right because I eat with my left hand. Unfortunately, the clear spot on my desk is on the left, so I was trying to get the book settled with the bowl in front and promptly dumped the whole thing in my lap. It was messy. Thankfully it was all on me and my chair, I clean up pretty easily, but my chair took all day to dry. Was so scared of sour milk smell I covered it in Febreeze. Back to normal today.

Today has been much calmer. I went off for a quick doctor’s appointment this morning then spent the rest of the day resting. I had a little X-men movie marathon so I could return the DVDs to Horatio tomorrow. Was talking to Horatio about it tonight and he told me that Vinnie Jones was The Juggernaut [bitch!], I had no idea! Pleased me.

I made a tuna salad sandwich of sorts for lunch. Two slices of bread topped with tuna, tomato, spring onion, pickles, cheese, lettuce, pepper and salad cream. Very yummy. Made scrambled eggs on a cinnamon raisin bagel for dinner. I’m fancy.

I got my bag packed for tomorrow and tidied up a little bit in the dressing room. Have a pile of thing to alter.

I’m exhausted, so I’m going to head off to bed.