Gigs!
Imogen Heap on 12 February. I took my wheelchair and managed to get to the front. The hearing loop was broken. The show was very well put together. The opening acts reminded me of Ross on Friends playing his ’sound’. She had a gorgeous shirt on that I coveted for Weasel. Cute boots too. Got a lovely blue tee-shirt with her tree logo on.

Depeche Mode on 20 February. Ecstasy! Horatio drove down on Friday night. Joined Weasel, Doodle and I. We watched South Park and ate Dominos. Saturday we drove down to the O2 Arena. Parked. Bathroom run and merchandise purchase. The 2009 tee-shirts were marked down to £10, so I got two shirts. Walked [I was pushed in my wheelchair] into Greenwich. Tried to see the meridian line, but the hill was too steep for me to get up. Very late lunch. Back to the O2. Found our seats. Enjoyed Nitzer Ebb rather a lot. Best opening act I’ve seen in ages. Seats were amazingly good. Exceptional set list. Highlights: Walking in My Shoes, In Your Room, Never Let Me Down, Stripped and Behind the Wheel. Made it home around 1:15. Sunday we had breakfast, played Monopoly, then Horatio drove Doodle home and continued home himself.

Doctors!
I’ve seen the chest doctor – he is happy. My lungs are much the same as before the dilatation. I’m definitely coughing less [yay!]. He thought I’d lost weight even though I’d gained 5kg since I’d seen him last [supposedly].

I saw my ENT, my ear infection is finally cleared up after nearly three months. I can wear my hearing aid again which is very nice.

Sign language! Singing! Arts & Crafts!
I’m still loving the BSL classes. I want to practice more. We have our 102 assessment in a couple of weeks. We’ve just finished sports and hobbies.

Singing lesson was cancelled last week, so I’ll have it on the 10th. I’m really pleased with my progress. I’ve been practising much more and I think I’m doing a reasonable job.

I’ve been playing the piano too. I’m just looking at some of Tori’s songs – ‘Here. In My Head’ and ‘Sister Janet’ today. I’ve very slow, but I find that I’m getting better at reading the music.

I’ve drawn twice this week too. Not for long, but I’ve done it. I also read a sewing pattern and asked my loved ones with experience for advice. I’m hoping to have the pattern cut out soon then the fabric.

My parents!
Still haven’t decided if/when they’re coming to visit. It was supposed to be May, but who knows. While in therapy I told her about how I was blessed to be a ‘peace marker’ when I was born and that I’ve been told that my entire life. When you’re five and trying to keep the peace that means you back down and don’t fight for anything. I think that explains why I have trouble asking for things [I probably won't get it] and why I have very little passion [no point in wanting anything, I wouldn't get it]. So after talk with her, I talked to my Dad. I explained half of this and told him that I think I’m treated differently to my sisters. To my surprise, he agreed with me! We had a chat and I’m hoping good things will happen. Additionally, he talked to my Mom during the following week and when I spoke with her she surprised me too. They sent some money to me to keep in a savings account so they could use it when they visit. My Mom told me I could use that money to hire help with the cleaning. All I had to do was let them know I’d done it. I was shocked. I also thought maybe it was a trick. I talked to my therapist about it and she rightly pointed out that the only way to know what’s going to happen it to do it. So I’m going to research carpet cleaners and pay them with my parents money. Still reeling. My therapist and I agreed I’d do it within a month.

My sister!
Is awesome.

Random!
I roasted a turkey. I’ve been craving turkey sandwiches. I’ve not done it before, but thanks to my sisters guidance and a bit of research I did it!

I’ve bought tickets for my family to see Alice in Wonderland next Tuesday. Very excited.

Yesterday Stoat and I went to the health food co-op shop and I stocked up on my bread ingredients and other staples to the tune of £70. Afterwards we went to a local park and watched swans, geese, moor hens and coots. The coots diving for food were particularly awesome, check out this video.

Doodle, Weasel and I are seeing Tom McRae on Thursday. Fun.

Going swimming tomorrow. Love swimming. Will remember to take my card this time.

I hope it is just how I feel today/right now.

I had an off day with singing on Sunday I went for a long stomp-y walk to get it out of my system. Yesterday I had an amazing voice lesson. I am learning a lot. I didn’t know I did this, but I don’t sing at my full volume because I had a history of being ‘too loud’. So I ended up with a quiet and unsupported sound that didn’t do what I wanted. Turns out I just needed to have a bit of a shout and engage the right muscles. Doodle and Weasel recorded a few tracks last Saturday for me to sing with, I’m very excited.

Therapy today was very good. I can see very clearly that I am coping better now than ever before, I can see that I’m getting into some sort of rhythm and balance. Unfortunately, this means that a lot of my buried issues are coming up now and I have to deal with them. Like, I think my parents treat me differently than my sisters and I think they put too much pressure on me as a ‘peace maker’. I’m so incredibly close to just telling them not to visit this year, I don’t want to see them. Gah.

Book club was on Wednesday, we read One Good Turn by Kate Atkinson. We had a wonderful discussion once we were able to get into the library. I left early with all my things carefully packed and walked over. When I got to the corner near the library, I realised I’d left the key at home. Normally, there are library staff lunching on a Wednesday. They weren’t in; so I went across the street to what looked like an occupied house and rang the bell, hoping to use their phone. No one was in. Thankfully, Jo showed up just then and she had a Blackberry; I called Weasel and she called work people to tell them she was going then brought the key. I’m just pleased because I only called myself ’stupid’ once and I took immediate action to fix the problem without berating myself. Our next book is The Life of Pi by Yann Martel. I’ve read it four or five times, I’m excited to read it again and to discuss it.

Played the piano more today; Teardrop by Massive Attack [found some dodgy sheet music online]; practiced some scales and played some old performance pieces. Progress.

Doodle, Weasel and I are off to see Imogen Heap tomorrow. Very excited! She’s an excellent performer. This will be show number four for me I think. She’s playing Royal Albert Hall in November, I’d like to go again if our finances will allow.

I was slow sure, I was imperfect sure, but by god, I did it!

My therapist will be pleased.

I played for an hour all told and my back is killing me and my right hand hurts. But I don’t care!

I couldn’t hear very well with just the single hearing aid so I’m sure it was unnaturally loud, but again, I don’t care!

I haven’t felt like playing in such a long time, just the desire to play in the first place felt incredible. I’m really hoping this represents a turning point of sorts and I feel like doing things again.

Hope hope hope.

I’ve been playing Bookworm Adventures 2 my best word so far is ‘unattached’. I want to get more words with 10 or more letters.

I have had three very long walks over the last three days. This is really when I can see any changes the last dilatation has made. My air is definitely moving better. I’m not coughing as much, but when I do cough it is more violent. I expect this will improve over the coming weeks. I think I’ve recovered completely now. On my walk today, I crossed the street to walk in the sunshine and by happy coincident happened to be in the path of a very excitable puppy. She saw me and started straining against her lead to come see me. I got a puppy kiss, puppy nibble and learnt that she was three months old. Absolutely adorable, I think she is a chocolate lab. So cute.

Sign language class was fun on Friday, we’ve been learning dates/times/holidays etc. and we had to write a diary of our week. Then pair up and sign each other’s weeks. My partner is fairly typical; she works, has a drink with mates, dinner with boyfriend, gym etc. Now because I’m unemployed, I end up doing a lot more. I made bread, did the laundry and had a singing lesson. It was fun and I got to learn a lot of new signs. Oh, I don’t think I said, but I passed the first assessment back in November.

I’ve had to re-re-re-re-re-start Weasel’s skirt, the one I’ve been knitting for years [small exaggeration]. I messed up the star alignment and it looked silly. I tried to convince myself it wasn’t a big deal, but I couldn’t. So out it came and I’ve started again. Perhaps I’ll finish it by the end of the year.

I am starting to feel ‘normal’ again. I’m still coughing impressively. I like to wiggle my eyebrows at Weasel and say, “I’m so hot, no wonder you married me.” Then we laugh. And I probably cough again.

I’ve been watching films. I finally saw Citizen Kane; not entirely sure why it was so acclaimed. Lisa was right though, there was not cane in Citizen Kane.

I did a fancy thing. I’ve installed Wamp server software on my computer and a local copy of WordPress. Now I am designing my new layout without upsetting my host. This is even better because if things go according to plan I will get to help Mary build her virtual assistant website and now I’ll be able to do it comfortably.

Today was therapy day. I hadn’t realised how much better I was doing until I sat down to discuss it. She described my day-to-day activities as ‘busy’ which surprised me, I feel so… lazy for lack of a better word. I’m going to continue to record my activities, but adding ratings for fatigue. I am feeling better; hopeful, excited in some places. It creeped up on me. She also gave me another tool, a responsibility pie. I’m to take something that is making me feel bad or guilty, and dole out pieces of the pie to people/things that are responsible. I get my piece last. So if I think I’m 90% responsible for something, I can use the pie to see if that’s true. If I could think of an example, I’d totally put it up.

Weasel has gone out dancing tonight so I get to indulge in mashed potatoes for dinner. Yum!

My throat is very sore, but I can feel that my breath isn’t being ‘caught’ on it as much. I’m coughing a lot as is usual after these things, I’ll know how things are in a few days.

Out of context, the previous lines are actually really kinky.

We’re of course talking about my lungs and my tracheal stenosis. Which is what my discharge papers called it.

It was fairly standard as far as hospital stays go. I had some nice room-mates and we talked for hours and hours [which might be why my throat is still so sore]. We asked for toast at about 10pm just because it sounded yummy. I walked the corridor after midnight because I couldn’t sleep. The next morning I went to see my ENT, I have an ear infection. My right ear started making buzzing noises in December and it hasn’t stopped. Happily, this infection hasn’t hurt. I have ear drops and I’m not to swim or wear my hearing aid for a fortnight. After that I went to see vasculitis; my blood tests were normal, despite the wrist pain. So the plan is to decrease the steroids by 1mg ever two weeks stopping when I get to 2mg.

I’ve been sitting and watching TV/movies since I got home yesterday. Feeling very floaty, which I expect is from having all the anxiety and adrenalin.

The best part is that I get to go and do it all again in 12 weeks!

Horatio and I had a very nice visit, difficult in places, but totally worth that. I think he is much happier now overall which is the main thing I’m taking away. I made a fantastic garlic soup for our entertaining engagement on Sunday. Really pleased with how it turned out, I’m totally making it again sometime.

Horatio had to spend a big chunk of time working this weekend and I realised why having Weasel work from home was so hard for me. I feel like I’m in the way. I want to go about my day as usual and I feel like I can’t because it’ll distract her and take her away from work. So no piano playing, little TV watching, quiet quiet quiet. So we talked about it and I’m going to do whatever I feel like [within reason] and if she doesn’t like it she can go to work. Except I wasn’t so blunt and we had a very nice chat that will make us both more comfortable.

I started a nice big dish of roast vegetables yesterday only to discover that my aubergine was rotting from the inside out. Very gross. So I got some leftover wraps from the freezer, made some rice and called it dinner. Today I got a new aubergine and a courgette and now everything in smelling very tasty. I have some toasted onion baguettes to place them on and halloumi and goats’ cheese to melt on top.

I’m going into hospital tomorrow for my dilatation. I’m oddly nervous. I’ve done this before, I’ve recharged everything I want to play with, I’ve booked my taxi [6:45!] and have all my papers. There isn’t even that much riding on this, my doctor has told me that this probably won’t have any noticeable effect on my breathing.

I’ve had a sneeze lurking in my right nostril all day. I’ve tickled it and sneezed several times, but it insists it needs to go again. I’ve tried rising my sinuses. It’s making my right eye water. Gah.

Really need proper sleep tonight, it has been too long.

* Jesus Christ! 11 years!? December 1998 never seemed so far away.

Anyway, leave a comment just saying hi or anything else that comes to mind. If you’re stuck, tell me what you put on your perfect slice of toast. I had plain old butter this morning and it was heavenly.

A special ‘thank you’ to Horatio for posting this for me. Apparently, my host has decided that I have tried logging in too many times [I'm totally not logging in too much!] and has blocked my IP address. For the third time in less than 24-hours. Not happy.

* She may have been going to put people out once they are on fire. I’m not clear on the details.

BlanketGirl has been going round finding all the BigFish free game offers and sending them to me [and others]; I installed almost all of them and I started Azada. Very fun for me and friendly to my no spare cash situation.

Speaking of no cash. This is because we paid off my computer [cleared our savings account] and had Christmas and birthdays. Hopefully, we’ll be normalised by March. Meanwhile, Weasel has an appointment regarding her getting a tooth implant and that will take a little longer to recover from.

I try not to end sentences in prepositions, but I am not always successful. And I personally think ‘always’ is a word. ‘Alot’ is not though.

I’m going to make mushroom burgers this week and roast veggies with couscous. We’re heading to the shops very soon.

I am very tired. I think it shows. I am also nervous for my pre-op appointment tomorrow and vasculitis on Tuesday. I really don’t want to be having a flare.

The things I write here are not normally amusing and I think part of that is because I do not interact with people. I don’t like doing it, they piss me off. So I don’t get to describe encounters with mechanics or school teachers or children. I could tell you about the asshole I saw driving along talking on his mobile even thought it has been illegal to do so in this country since 2003. I could tell you about the other asshole I saw walking along in the cycle path on a main road in the opposite direction of traffic simply because his hipster shoes didn’t offer enough grip for him to use the snowy pavement. My four year old Doc Martens did just fine though.

There were many kitty paw prints in the snow. Those were cute and provided a balm for the anger I felt at my fellow humans.

I was walking to therapy and back again. My hands are still fucked so that makes cycling challenging on the best of days, add in the snow/ice and it just wasn’t going to happen. I’m pleased to be home now for the rest of today.

Therapy was good. We talked more about ways to encourage excitement, recording my achievements and enjoyment levels of day-to-day life and how to learn to let people just be different instead of bad or good.

Sign language starts up again tomorrow. I am excited, but I am also concerned about how I’ll do it with my hands all angry. Stupid hands.

I keep misspelling words and using the wrong ones, I’m going to blame my hands and leave it there.

Christmas Day was excellent. We had lovely food [curtsey of Chef Stoat]. Wonderful conversation. A lovely walk at dusk. Fun fun fun with Christmas bingo and Christmas Mad Libs. The charities we donated to this year: British Heart Foundation, Médecins Sans Frontières, Cancer Research, CamTAD, Cambridge Rape Crisis Centre and East Anglia’s Children’s Hospices.

The weekend was spent eating too much, moving too little and generally lazing about.

Tuesday I went swimming. My back is absolutely normal now thank goodness. Now I just need my hands to cooperate. Cycling was very difficult.

Hands. Grumble. On the 18th, I woke up and my hands hurt. I normally wake up and they’re asleep [pins and needles]. I know this is because of the peripheral neuropathy caused by the WG, it is fine, I normally just flex my hands and move about and everything is cool. Since the 18th though, my hands have hurt and refused to wake up and fall asleep quicker than usual. I’ve had trouble holding the phone, cutting my food, typing, reading [holding the book is hard] and chopping anything is completely out. I don’t have any other WG symptoms and this show up long after I lowered the steroids to 1mg, so I’m hoping it’ll go away. I see my doctor on 12th January.

There was cleaning on Wednesday and I made chilli. My chilli recipe is literally a list of ingredients, no measurements. Making it brings me much joy. I made cornbread to go with and oh my it is good.

Yesterday Doodle came round after work. We watched: Eddie Izzard: Stripped [to make up for the fact that we forgot to go to our show on the 4th], You and me and everyone we know and The Thing. We ate: Dominos pizza and Oreo Truffles. We drank: pints of Cranberry & Blueberry juice, orange juice and Sprite with a shot of gin. We grew: A Magic Christmas Tree. We played with: tiny glow sticks.

Today was super cool. Weasel turns 30 tomorrow and Mal turns 58 on Sunday. We went over to celebrate everyone today. Weasel asked for pennies so she could get an fantastic custom-made skirt for belly dancing and Weasel, Doodle and I pooled together and got Mal a necklace and earrings set. We played games, chatted and had a wonderful time.

Fergus got an eye patch [like a pirate] from one of the crackers we opened today. I was getting concerned about his eye since he wasn’t interested in taking it off and asked Weasel to have a word with him. When I came back downstairs, they’d moved the patch to his other eye. He has been walking around saying, ‘Arrrrghf’ to everyone. He has also increased his ‘nom’ frequencies, Weasel nearly lost a hand. Dread Pirate Fergus.