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.

Today has been so stuffed with adventure, I am quite unable to rest until I have cleared it from my brain.

I must apologise in advance if my language is particularly flowery tonight. It isn’t my fault, blame Mr W. M. Thackeray. You may recall on Sunday last I mentioned that I had some 400 pages of Vanity Fair to read before my book club meeting today. I had ten pages left when I arrived at the library. My fellow members indulged me and I finished it. I loved it, I would have loved it more if I could have continued to savour it. There are wonderful words, sentences and the characters are so well-rounded (Jos especially! ho ho!).

BUT! Let’s start at the beginning. The five minutes of walking up and down the stairs has made my calf muscles very angry. I’ve been limping about all day. Thankfully, cycling wasn’t a problem as that is more thighs. My arms are aware that the shake weight was used, but not too bad. I am pleased. My plan is every-other-day so I shall go again tomorrow.

I put my steroids up again on Saturday and last night I realised my ear had calmed down. I called the clinic this morning to cancel my ENT appointment and to ask what I should do re: steroids. I had one doctor tell me I had to be on a lower dose before I could have the rituximab and another tell me to up the dose until I saw the ENT. I was told the former was incorrect, I didn’t need to be reduced to have it and I could stay on 10mg until the infusion. She offered to chase that again for me.

Weasel and I cycled to the hospital for her appointment. It isn’t my place to say for what or the results, suffice to say she is okay. While we were with the doctor, my phone rang. I couldn’t answer, but it was Ellie. I listened to her message and since it wasn’t urgent headed home.

At home, I ate a sandwich I made yesterday and read the book. My vasculitis clinic nurse called, I apparently had dates for my rituximab infusions, just no one had told me. I go on the 24th and the 7th. It’ll be an all day thing.

I decided to head to the library early and had 15 minutes to finish before the others showed up. I did my best, but as said I wasn’t quite there. They chatted for a moment and let me finish. Technically, I was the only one who read it. Three people were unable to attend, one of them had read it, the other two hadn’t. Of the two who were there, one had read it before years ago so had flicked through and then watched the film and the other had just watched the film. It was still fun to discuss though. The book I had had copies of the original illustrations so I showed them a couple of my favourites and read one sentence I’d really loved:

“Our luck may fail: our powers forsake us: our place on the boards be taken by better and younger mimes – the chance of life roll away and leave us shattered and stranded.”

Home again, I called Ellie and arranged to meet following yet another appointment. Happily, another order of clothes had arrived. This time it was two coloured camisoles. They were lovely and I’m delighted. Suspiciously, everything I’ve ordered so far has not only fit, but looked good too. Shocking to have both. We’ll see what we think of the rest as they arrive.

I headed off to the GPs on the scooter again [still awesome]. It went well, but there was some confusion about what to do with a slightly elevated liver function. There’d been some crossed wires and now I’m not sure if I should be doing anything or not.

Ellie, her husband and their wonderful new daughter arrived around 6pm. Baby is absolutely gorgeous. So tiny, smells of new baby. I got to cuddle her a bit, was amazed when she gripped my middle finger and her whole hand could just hold the top knuckle of my middle finger. I got to give Ellie the baby blanket I’d edged [in crochet] for her and the cinnamon rolls I’d made Christmas Day for her. Ellie wants to cross stitch a little thing for the baby and I’ve offered to guide her through that.

After they left I had a spot of dinner, talked to Horatio, talked to Mal and realising my wired condition resolved to get it out of my system here.

So concludes my day of adventure.

I decided I wanted to step up my exercise. Walking 40 minutes was all well and good, but something more intensive might be appropriate. I decided to take my wonderful new scooter to my doctor’s appointment this morning so I could use my energy for exercise later. I thought I’d start gently: five minutes walking up and down the stairs, five minutes jump roping, six minutes with the shake weight and maybe some exercise ball exercises.

The first part of my plan worked beautifully. This was my maiden voyage with the scooter. Its top speed is a normal walking pace, maybe slightly faster. It is comfortable and quiet and I’m delighted with it. The appointment went well and I am keen to explore further afield.

The second part of my plan started out well enough, I did the stairs and I managed three minutes of jump roping before my legs fell off. I’m resting now, but I’m going to do the shake weight and the ball when I’m done.

I neglected to mention that Weasel, Doodle and I saw Ani DiFranco in London last week at the Union Chapel. It was our third time seeing her and it was a treat. I contacted the venue last month to find out where I could put my chair and if they had a hearing loop etc. Turns out they’re very kind to disabled types, arranged for a space for my chair and for Doodle and Weasel to sit with me. Unfortunately, they didn’t have a hearing loop.

We decided to walk to the venue as it was only 1.5 miles away. I took my powered manual wheelchair and we had a lovely stroll through Islington. The Union Chapel is gorgeous, I’d been dying to go for ages, I missed a Heather Nova show there several years ago and I’d been waiting for another opportunity. When we arrived they told me our reserved seats were down the aisle and on the right. Off we went, surprisingly, they were on the front row. I was gob-smacked. I stored my wheelchair under the stage.

The lovely Ruth Theodore opened for Ani, really impressed with her. I’ve decided she is the lady for Doodle and envisioned small guitar playing children. She said she’d been doing star-jumps [aka jumping jacks] in the back to warm up and I was delighted because whenever Weasel complains of feeling cold I suggest she do star-jumps. I’m not sure I’ll like all her music, but I certainly see the appeal and I know a Weasel and Doodle both likes her immensely.

Ani played a lovely set-list including my personal favourite Napoleon. She said things were going too quickly because she wasn’t talking enough between songs, so she took requests. Someone asked for Untouchable Face and that was superb. I never do these shows justice, so I’ll stop there. We had a lovely walk back to the station and made the 11:15 train so we didn’t get home in the small hours of the morning.

I’m having a wonderfully lucky run at Scrabble, I went out again for the third week in a row – with ‘undoing’. I won both my games this week too. The library is reducing its opening hours [boo for austerity] in March/April and we will be meeting at 10am Mondays now instead of 2pm. I’m slightly nervous as if I’m not doing well I will sleep that late. I’ve been reasonably good with 8:24 for several weeks so I am hopeful.

I’m off to see Horatio this weekend. I made more graham cracker fudge sandwich biscuits on Sunday and I’ll be taking him a box from the freezer. They turned out much better this time, but it took me three hours beginning to end. A lot of effort, but I’m craving them at the moment so I will keep doing it. Meanwhile, Horatio and I will continue catch up with Castle [I think it's started again anyway?] and resume Alias.

I totally figured out how to make passive aggressiveness work! Tell the other person you’re doing it.

Weasel and I practice the wash-dishes-as-you-use-them method. Sometimes if a Weasel is very busy she won’t wash hers. I’ll usually wash anything that’s hanging about when I wash mine so it’s not a problem. However, earlier this week I’d spent all my energy for the day so when I went to wash my bowl + spoon I couldn’t face washing hers too. So I left mine in the sink. Then I went to Weasel and told her that I’d passive aggressively left my dishes for her to wash in protest of her not washing hers. It totally worked cause she went and washed all the dishes after that.

I’m worrying a bit about book club this week. Our last book, Vanity Fair is very long and I haven’t moved as swiftly through it as I normally would. I have approximately 400 pages to read still, having read 470. I blame the beautiful words. He used ‘superciliously’ twice and whenever these lovely words show up they give me a little thrill and I pause to enjoy it. It makes for slow reading.

Today has been a challenging day. I think I’m doing that thing where because I’m fat I must be punished. I try not to do that because it doesn’t do me any good in the long run. Today I should have rested a bit from the last three and tried get my back to calm down. Instead, I took a shower and cleaned it while I was in there, went for a 40-minute walk, shopped*, made graham crackers and sandwiched them with fudge, caught up with The Young and the Restless [GAH! Victor & Sharon?! Seriously?!] and read the fat book in-between it all.

* Yes shopping. Nan has a no-mourning-clothes rule in place for her funeral. Unfortunately, my smart clothes are all black. I have a lovely purple shirt that I could wear, but I only have black skirts. So I decided to buy purple tights. I also have a grey top that requires a cami so I’ve bought blue one and a green one and matching tights. In theory this will give me at least one workable outfit. I’m also fairly annoyed with my lack of real clothes so I went on another bender to try and find something. I expect most of it will be returned, but I am hopeful that at least one thing will work.

Right, the lovely Mr Benedict Cumberbatch and his lovely cheekbones will be on TV in ten minutes so I best get myself prepared!

I have spent six hours in the last three days getting our upstairs rooms rearranged to cope with our new [to us] bed.

Before this project got under-way, our bedroom had our king size bed and four bookcases. The hobby/guest/spare room had my sewing desk, a filing cabinet, a clothing rack that I stored fabric on, the rower, a bookcase, a built-in wardrobe featuring old clothing and random odds and ends and an assortment of air-beds depending on who our guests were.

I got the rooms prepared and Stoat, Mal and Doodle all came over to get the bed installed upstairs. They were wonderful getting it all set up. I helped a bit, but my lungs didn’t like that and Mal made me lie down. I did a great job guarding the big van they hired though and I totally drove my beautiful new scooter into the shed.

The hobby/guest/spare room now has a wonderful adjustable double bed, a filing cabinet, my sewing desk and the rower. The bookcase has moved into our bedroom, the rack for the fabric is in the garden* and the air-beds and fabric are in the built-in wardrobe. The wardrobe was sorted through, I had loads of dresses from my teenage years of which only three fit and I only liked two of those. Now it is much better organised and the room makes sense.

* The clothes rack is over 10 years old, the bottom bars are slightly bent and it is weather-proof so now we have somewhere to hang plants.

The scooter is lovely, just right for me. I got the insurance sorted today so we’re good to go! I’m going to have to think of somewhere good for the maiden voyage. Especially since my wheelchair is still making the horrible beeps [see previous post] – it gets better though, it isn’t just one wheel any more! Both are doing it and the company still hasn’t got back to me, so I’m calling again tomorrow. Good times.

The notify sound on my phone is a carefully edited five seconds of the drums at the opening of Caught a Lite Sneeze [Tori Amos]. I’ve enjoyed it immensely, but it seems I haven’t listened to Boys for Pele since I put it on; I’m listening to it now and I keep twitching thinking my phone is going off.

My hospital is testing fancy new lung function equipment and I got to be a guinea pig on Friday. I had to put on a very tight white sports type shirt then she projected a grid onto it. I did the usual tests on the old equipment and the sensors in the machine watched how my chest moved. They’ll be able to show that the new machine measured my lung function correctly then. It was really interesting and it is exciting to think how it’ll be able to help infants/children/elderly people.

After that I had a vasculitis appointment. It didn’t go as well as I’d hoped. I wanted a date to start my new meds, but they don’t have one yet. I was hoping to see my ENT as my ear is being strange. It is making noises that it shouldn’t be. Unfortunately, they were very busy, so I get to go back again next Friday to see him. And because they’re not sure what is making my ear weird and given my other symptoms I’m back up to 10mg of steroids. We’ll adjust after ENT if necessary. I’ve been sick for five years now and I’m getting pretty bloody sick of it.

It’s hard because I can be pleased with getting the rooms sorted upstairs, but I can’t help but think that six years ago I could have done that project in a day, not over three. Ah well, this is life.

I made chilli today. I simmer it for several hours and when Stoat arrived he said my house smelled like a Greek restaurant.