The 4th & 5th; I feel like my breathing is getting worse.

The 4th of October. 

Several really weird dreams last night, involving prostitutes, hair dye, TV shows and cats. Not all in the same dream. 

This morning, I spent the entirety of Sunday Brunch typing up four days’ worth of blog, some of which were rather long, and uploading about 35 pictures which takes ages on the iPad. I haven’t published them yet because I talked about Christine’s presents which she hasn’t opened them. I also painted my nails, so clearly a very productive morning. 

Grandma came for lunch (good thing too as she can’t come next weekend because we’re getting more kittens on Saturday). Mommy made sirloin of beef and it was very pink which is my favourite, then we ended up watching the NFL. I did not fancy this so I left the table at that point. 

For the rest of the afternoon, I have been watching things on the box and having a go at crocheting a mitten. I only had enough wool to make a small one, but it went rather well; the only difficult bit was the cuff, but I can modify that. 

The 5th of September. 

Ugh, I have just muted the news because George Osborne is giving himself a massive pat on the back for all this “governing for the many” that the Tories are supposedly doing. God how I’d love to question him and Cameron but they’d never answer the questions asked so what would be the point?

Anywho. This morning I had a long chat with Sheila from CPS about something for her to put on the website about me I was having to explain all my issues and she was dismayed by how young I am. Yep. I was searching the internet last night for any treatment that might be being researched for lung GvHD/bronchiolitis obliterans but there isn’t. It also seems that there’s a high risk of it happening after a lung transplant anyway so even that might not fix me. I feel like my breathing is getting worse. I planned on going to the gym today but I got out of breath just making my lunch so I didn’t think I’d cope well trying to work out. 

Christine FaceTimed me during her lunch break because her presents had arrived, so I could see her open them. She was very pleased with her sweets (Roses Strawberry Dreams) and hats. She tried them both on they fit her giant head so a great success! For the rest of the afternoon, I have been crocheting a pair of adult-size mittens. Very productive. 

The 30th & 1st; A less depressing day, for sure.

The 30th of September. 

A less depressing day, for sure. I was at the chiropractor this morning which I definitely needed because I’d strained my neck at the gym. It now keeps clunking every time I look to the left, so I’m hoping it settles while I’m asleep tonight. 

I had to go out again this afternoon for renal clinic, but until then, I worked on another hat for Christine using the wool I bought on Monday. I might give her both and see which one she likes best, or she can just keep both. I got the majority of it done before we left at about half past two, then we arrived at the QE and we ended up having to pull over in the car so I could go in the wheelchair to my appointment while Mommy parked as there were no immediately visible spaces. 

She met me in the waiting room and we sat there for over an hour before being called in. We were prepared for this and had reading material, but a lady next to us was livid even though she was not new and ought to have been used to it. Nothing much to report from Dr. Hewins. He’s added Doxasozin to go with the Irbesartan, and apparently my kidneys are slightly underperforming so there’s a lot of protein in my urine but he’s not very concerned just yesign

The 1st of October. 

Busy day! I was up earlier than I had expected to be after a look at my diary showed me that my hair appointment this morning was an hour earlier than I thought! I wanted a total change, some drastic colour, so I showed James some pictures of autumn leaves to use as inspiration and we came up with a plan. I was hunched over Vogue (I have to, to be able to read it without my glasses) when I saw a small dog at my feet! A lady had brought her Yorkshire Terrier with her and was sat on the other side of the mirror to me so I gave it a little pet. Somebody else came in with a baby too, so I was having a great day. I had a little chop from Michaela, tidying up the sides, back and fringe, and I am to make Blossom a flower hat. 

Afterwards, we had a trip into Sutton to get some micellar water and cotton wool pads, then we went to the sorting office to pick up a parcel we missed yesterday. 

We came home for lunch, then went back out into town because I’d seen a dress on the Topshop app that I wanted to get, but after looking around the main shop and the Selfridges one, we couldn’t see it anywhere. I decided to keep looking elsewhere for a substitute and actually found a really good one in Oasis which I purchased before we came home again. 

This evening I have wrapped Christine’s presents which was really fiddly because they were of no real shape. I hate doing untidy wrapping. 

The 28th & 29th; The most monumentally shit of days.

The 28th of September. 

A day of ups and downs. I felt good when I woke up, and we were going to have a trip to the new John Lewis so I could look at wool. Unfortunately, they do not have a good selection of the type that I wanted. I did get some buttons and a bamboo crochet hook because I’m finding the plastic one I have isn’t smooth enough. Anywho, we went to House of Fraser where I got some, although it cost more than it would have if I’d just ordered the wool I wanted and paid for next day delivery. So I was mad about that, then on the way back to the car, a woman whacked my arm really hard with her enormous, heavy handbag and didn’t even stop or turn to apologise or acknowledge me. I felt like bursting into tears but there was no point. I should have reversed into her or run over her toes. Stuff like this just makes me feel invisible and shitty and worthless. So that was good. 

After lunch, I went to the gym, and that made me feel better. I got all my work done and listened to a podcast that cheered me right up. However, I did laugh out loud a few times so looked somewhat weird if you caught me at the wrong time. Smiley boy made his first appearance in a while but there were no mats for him. Two boys using a machine next to me had doused themselves in body spray to the point where it choked me, and I was grateful when they moved on.

The 29th of September. 

The most monumentally shit of days. This morning I was screaming at the TV because of an able-bodied woman defending her use of disabled parking spaces and toilets. Except she can’t defend it, because there is literally no justification for doing that ever. It makes her a lazy, selfish piece of shit. Total scum. I dream of walking across a car park like she can but I can’t. She went on about how life is being made so much easier for disabled people but I’d like to see her spend a day in a wheelchair trying to get around. Badly built kerbs and doors you can’t open. She hasn’t got a fucking clue. 

So there was that. I have spent all day working on Christine’s birthday present, then just after half past four, Mommy came in after a phone call and told me Helen died in her sleep on Saturday night. Helen whose retirement party we were at last week. She was fine, looking forward to all the things she was going to do. And now she won’t. Then about twenty minutes later, I got a message from Joely saying Tom had died this afternoon. They got married last year and I knew he didn’t have long left, especially after a recent spell in hospital. 

It’s just a really shit day. There’s nothing else to say. 

The 2nd & 3rd; The duck and waffle was my favourite.

The 2nd of October.

Christine’s birthday!

Up early, trying to find a bag to put the presents in and advising parents on fashion choices. Daddy was having a crisis because he didn’t feel like both parents could wear pale trousers or they’d look like twins. After a great deal of agonising, he got changed our he would’ve been sad all day.  

The train journey was uneventful, bar the moment just before we arrived when I realised that I had left the presents in the car. I was so angry with myself, I hit the table and wanted to cry but didn’t. We took a cab straight to Duck & Waffle and waited for Christine by the lift where it was very chilly. 

The lift took us straight up to level 40 (so very high), and we checked our coats and the wheelchair before going to our table. We had to have a lot of discussion about what to order because it isn’t a traditional menu. We all had a seasonal spritz, then some n’duja and Gruyère bread (I couldn’t eat it – too spicy), Dorset crab, roasted octopus, goat faggot, puy lentils, duck and waffle, seasonal vegetables, spicy ox cheek doughnut and dark chocolate brownie sundae. Everything was shared, except my pollock meatballs because I didn’t fancy the other small plates. The duck and waffle was my favourite. 

We finished earlier than expected so had an hour to kill before Dressed by Angels, so we went to Spitalfields Market. I spied a Konditor and Cook and felt the need for a brownie, only to find myself recognised by my old pal Lizzy Hathaway-White who I knew back before I became ill and we were supposed to go to college together. She gave us a free small Curly Wurly birthday cake and I bought four brownies, and it was all just wonderful. Pact coffee were doing a pop-up nearby so I got a flat white from there to get rid of the taste of the terrible one I had at the end of our meal. We bimbled through the market and I spotted a Bread Ahead stand where they had chocolate doughnuts. I had to have one. 

We did eventually get to the exhibition, where we saw so many clothes! Costumes from The Red Shoes, Sherlock Holmes, James Bond, Dracula, Downton Abbey, Doctor Who, Game of Thrones, Hamlet (worn by actual Cumberbatch), Dr. Parnassus (worn by Heath!), Titanic, Kanye jacket from the Brits, and the Lobby Boy costume from The Grand Budapest Hotel. 

Again, it took less time than expected. We had a wander around Brick Lane but then there wasn’t much else to do! We ended up saying goodbye to Christine at Shoreditch the station, and we hailed a cab back to Euston. We were really early for our train, so after getting some drinks, we sat around for an hour, watching people run for trains. I was so tired, I just wanted to get home and get my shoes off, as I could feel my right foot swelling. Once on the train, I plugged in my headphones and ate my doughnut, getting very sticky fingers.

The 3rd of October. 

Oh, I had a big sleep. I can always tell I’ve been in London because my cotton wool pad after cleaning my face is covered in filth and my breathing is worse for all the crap I’ve inhaled. Living there would require full-time oxygen in the house. 

This morning, I wrote about yesterday while watching Saturday Kitchen and catching up on Great British Menu. It seemed to take ages! Also got Christine’s presents in the post so hopefully they will arrive on Monday and she is going to FaceTime me when she’s opening them. 

After lunch, I finally got round to reading the paper, and I had to rinse my hair because it was so full of product. It’s not completely clean, but I can at least brush it now without fear of breakage. Daddy and I went to see The Martian at ten to four and it was lots of fun. There were some stressful parts which saw me clutching at my face, but the majority was good, clean, Mars hijinks. There was slight overuse of the word “luckily”, but otherwise no gripes. I liked the LOTR and Iron Man in-jokes a lot. 

I just watched everybody in the film and in the cinema moving around. Everybody who is ambulant. I am so jealous of them. I keep thinking “Why me?” and I hate that because it is futile. I just wish there was something that could be done. I will never get a transplant because in theory, my lungs won’t get worse, but there’s also no hope of them ever improving. Between a rock and a hard place is a hard place to live. 


The 26th & 27th; Such an exciting life I lead.

The 26th of September. 

Today has been weirdly busy without me actually doing a great deal at all. I had a decent sleep (apart from an unpleasant dream about bugs) and spent my morning reading all the bits of the paper I deem interesting. I am very into the idea of making Ruby Tandoh’s pretzel rolls. 

I had my lunch, then wrote up four days of blog and worked on this crochet experiment until Jen came to go through cat paperwork before the potential adopters came.she arrived at the very busy time as we had an AA man and an RAC man here to look at the van we’ve rented to help Christine move tomorrow. It is missing a cap on the brake fluid reservoir and no one seems able to do anything because it’s not their responsibility. Daddy does seem to have got hold of someone now after five hours of people asking around who can locate a new van for us so there’s hope. It does mean he probably won’t be able to come out to see this thing in Centenary Square tonight which is a shame because he’s the one who really wanted to go. 

Anywho. Jen and I were going through the paperwork when the adopters arrived so I brought them through the chaos to the kittens. They were very inquisitive, sniffing everything and not running under the bed like I thought they might. Basically, after some talking and general questions, they decided they wanted the kittens, had brought a cat-carrier and they’re gone! Very sad. But I shall get some more to socialise (I’ve done a good job) when they’re ready!

Now to ice some cakes. 

The 27th of September.

Today definitely not busy at all. A day of just very fastidious work. Mommy and Daddy have been gone since before I woke up helping Christine move (I would have been no help whatsoever) so I’ve been alone in the house all day. 

What have I done with this freedom? I have crocheted. Oh, how I have crocheted. I was trying a beanie hat that is supposedly for an adult but I finished it this morning and it is way too fucking small for any full-sized human. That happened at about lunchtime, so after I ate, I went on Ravelry to hunt for different patterns and found one that I thought I could do. 

I had recorded The Gamechangers (hello, sexy bearded Daniel Radcliffe) so I watched that while I worked. I got a text from Becky at about quarter past two asking if I wanted to go and see the wedding photos which I very much did, so I put my wool down for a while and went over the road. When I arrived, Becky was lying on the living room floor because she has some sort of back injury, and we watched a slideshow of all the photos, plus all the ones from the photobooth. There are quite a few that I want copies of so I’ll have to go back over with a memory stick. I had a chat with Rocky and he seems so enormous compared to the kittens! Huge. 

I needed to come back to tablets, so I returned, had my hydrocortisone and continued crocheting until I finished the ball of wool. Now I’m perusing the internet for more and a metal 6mm crochet hook. Such an exciting life I lead. 

The 24th & 25th; My eyes were suddenly full of tears.

The 24th of September. 

So happy. Awake early but necessarily. I did have time for coffee this morning before we had to go out, unlike yesterday. I had to give the kittens their breakfast and lunch and hope that they would self-regulate while we were out all day. 

We got the train from Wylde Green to New Street because we thought driving in would be a nightmare on the day all the shops in Grand Central were opening. The train was busy but I just sat down and avoided eye contact with all the other passengers until we arrived. From what we could see our Grand Central, there were loads of queues. They also had a live band who played Uptown Funk insanely loudly and there was a flash mob. I’m sure it was entertaining if you were in the queue but we just wanted to get to our train. 

There is nothing to say about any of the train journeys except that I listened to Ryan Adams’ 1989 there and Rhodes’ Wishes on the way back. 

We got a cab to Timberyard where we met Lauren for lunch. TY does not have a fabulous vegan selection so she had to just have coffee and eat later, whereas I had a croque monsieur and a chocolate crodough. So much pastry chocolatey sugary goodness. We mainly talked about what Lauren is up to, and after about an hour and a half, Mommy and I had to go and get our tickets for Curious Incident from the box office at The Gielgud. Just as we left, a lady in an array of crazy amazing colours told me I looked lovely so I felt pretty great. Everyone at the theatre was very accommodating with my chair and we got seated early. There was a school party in our vicinity and I really hoped they would behave. I was not disappointed. The show was wonderful. Naomi was only doing a small part, she just had a few lines in various bits but her work was mainly physical, which she is so brilliant at. I’d completely forgotten the story so I had a quick Wikipedia catch up. Kaffe, who was playing Christopher, was brilliant. I could completely believe that he was autistic. The set was magical – what appeared to be just a box had so many secret panels and gadgets that took us everywhere and yet nowhere. Daddy would have loved it. At the end, my eyes were suddenly full of tears and I couldn’t explain why. I managed to keep them in.

After the show, we met Naomi at stage door and went for coffee and cake at Damson and Co, so that was dinner! We caught up on her life, what she’s doing, why she’s back in London. It’s all fine, she’s happy and life is good. Then we had a short backstage tour and Naomi got Kaffe to show us how all the traps work, and we talked about how exhausting the show is. 

At half six we really had to go, so Naomi sorted an Uber and a great guy in a Prius came and took us back to Euston while we talked VW and China polluting the world. 

Tonight I need to hug the kitties. They’ll be sad. 

The 25th of September. 

Very quiet day. I took Zopiclone last night to help my whizzy brain sleep but it didn’t work, so today it’s like I have a hangover. I’m just really slow and tired, so very glad we had no plans today. 

I got up at about half past nine and have slowly padded about the house all day. I wrote about yesterday and finished most of the badger hat. I need to get some buttons to do its eyes. 

This afternoon, I started work on a little experiment and watched unimportant things on tv. I’m just waiting for it to be bedtime, really. I feel a little bit sad but I think it’s just chemicals, and I need sleep. 

The 22nd & 23rd; Another day, another clinic.

The 22nd of September. 

Is it weird that I still have dreams about being at school? They’re always similar – I’m either doing GCSEs or A-levels but they won’t count, so I don’t need to do any of the work, and I’m still ambulant. I wish they’d stop. I have no desire to be back in education. 

This morning I did a blog post, then had to fill in forms for the O2 Academy so I can have a disabled space at the Death Cab gig and for my new CEA card so I can continue to get free cinema tickets. I hung out with the kittens and they were freaking out about the heavy rain because I don’t think they’ve experienced it before.

This afternoon I went to the gym and saw none of the regulars, except the chap who always wears a hat. I was coming toward the end of my routine when my headphones started having a fit and I wasn’t getting all the sound. I can’t cope with the gym music so I finished early, and was in the middle of stretching when I had a phone call from Jen because someone wants to adopt the kittens! She’s coming to meet them on Saturday and we shall see how that goes. I will be sad, but then I’ll get some new ones. 

I have done the stripes of the badger hat this evening, now I just have to attach them, and I think that’s going to be tricky. 

The 23rd of September. 

Another day, another clinic. Awake at half past seven, no time for coffee so I had to pick up some filth from Costa to wake me up lest I drop off in the waiting room. I read the whole paper, did the puzzles and had been trawling Twitter for entertainment when Ram called me in. There wasn’t much for him to do today, just wrote me a massive prescription so I don’t have to see him for two month. We took it to pharmacy and got a copy of heat to peruse while waiting. 

Went into town when we were finished to get facewipes and handcream because they are on offer and I have only one packet in the house. We got home at half one and I was starving so I had no doubt the kitties were too, so I fed them straight away before making my own lunch. I spent the rest of my afternoon doing more of the badger hat and watching stuff on the box. Not massively productive. 

I am very much looking forward to London, Lauren and Naomi tomorrow. Plus Timberyard which means crodough!


Get every new post delivered to your Inbox.

Join 2,822 other followers