Archives For Edward’s Menagerie

The 1st of July.

Standard Saturday. To a degree. This morning I didn’t want to get up but forced myself. I blogged, then I read the paper and did the puzzles. Very sub-par performance on those today. After lunch, I went over the road because Becky, Lorna and I were going back to the dress shop for our second dress fittings. My straps had to be shortened again and now she’s pinned up the bottom so it should all be fine now. 

When I got home, I watched an episode of Hannibal, and part of Humans while I crocheted a raccoon ear. Just as I was finishing, Daddy called down the stairs to ask if it was a good time to go and see Ant-Man. As it happened, there was a showing in half an hour so I sorted myself out and off we went. 

It was a pretty busy screening with lots of children, far too many for me to shush. I did have to turn around and give one a stern stare for messing with its feet. The film was fun, lots of silliness, and we stayed until the bitter end of the credits for spoilers. 

Got back and it was time for tea! Mommy had done Tom Kerridge’s côte de boeuf and it was tasty. Now I’m not looking at Fabrice Muamba on The Cube because it’s stressful, waiting for Katherine to be on (when I’ll hide behind a cushion).

The 2nd of July.

Jessie is finished! This morning I sat in front of Sunday Brunch and worked on his tail (apparently, Jessie is a him). It was the first time I’d done the fur stitch and it was tricky at first, but I got the hang of it. I actually finished it earlier than I expected it to!

After lunch, Mommy washed my hair, then she and Daddy went to get Grandma from church lunch, and I got up to date with Humans and Hannibal. The rest of my afternoon was just piecing Jessie together. Mommy was really happy when I presented him to her. Big hug. 

We’re watching The Biggest Loser and they’re dealing with their fears. They’re all afraid of failure and not changing their lives. They’re so lucky that this is all they have to worry about. I’m afraid of things like my parents dying, I’m afraid of being wrong about life after death, if it does exist and I have to watch everyone on earth without being able to participate. Like being behind one way glass. I’m not scared of getting sick again. I have accepted my lot in life, and it doesn’t thrill me. I’d certainly rather die before my parents. Sometimes I think it would be okay for it to all be over. But for some reason, I still have hope.

The 28th of July.

I’ve had a very productive day, without even leaving the house. Not so much the morning – just blogging. But after lunch, Mommy and I decided to make Konditor & Cook’s Curly Wurly cake. My role was to warm milk, sugar and chocolate together before pouring it into the rest of the mixture. They had to bake and cool, so Mommy went to see Grandma, and I watched the first episode of Agent Carter and one of the episodes of Hannibal that’s on the box while I started making the body of Jessie the Raccoon.

When she came back, we made the frosting and I filled the middle, then coated the whole cake with a thin layer of frosting before putting it in the fridge for an hour. Christine rang, then we watched Mock the Week from before we went away, then it was time to finish. I piled on the rest of the icing and decorated it with some chocolate swirls. I’m quite pleased with its appearance, just have to taste it later! I’ve finished Jessie’s body, now working on the head, and that’s going to be tricky. 

The 29th of July.

Jessie’s face was a disaster so I’m trying again. If this goes wrong I might cry. 

Had to get up at 7am for haematology clinic. I was fully ready to yell at Ram but when it came to it, I couldn’t. I was in by half past ten, and he read me Andrew’s emails, and basically, because it isn’t getting worse and it’s not medically necessary, he won’t do another venoplasty because he doesn’t want to screw up my veins more. I only have two ECP sessions left, at the end of this month and three months after that, so essentially, there’s not a huge amount of point in having those so we’re going to stop and the line is coming out. I did cry. I’m just sick of being angry about it all the time. 

This afternoon, we took some Curly Wurly cake over the road and had dramas on the house, then I was at the chiro with just a bit of neck aggravation,back in three weeks. We’ve watched an episode of Cordon, and I’m now trying really hard not to fuck up Jessie’s had number two. 

The 26th of June.

Woke up with a still broken lower half, so I’ve tried to move more today to stop myself seizing up so much. I’d got half-dressed and so was still in pyjama shorts when Kate came to flush my line, and she brought a student with her. I do love being an opportunity for learning. 

This afternoon, Daddy and I went to see the Minions movie. It was kind of disappointing. As much fun as all the gibberish is, I just didn’t find it as clever as the Despicable Me’s, and there was no Agnes and she is my favourite. The younger members of the audience seemed to enjoy it a lot though. I took the new chair and negotiated lifts and didn’t hit anything! Most pleasing. 

Came home to the good news that the U.S. Supreme Court has ruled that all the states have to allow gay marriage, and the horrific news of the terror attacks across the world. Such polar opposites. 

The 27th of June.

I have had a day off not doing very much at all. I got up about half nine but didn’t really want to. Mommy suspects anaemia again but I think my body’s just being pathetic. I keep getting a really dry mouth overnight and I think it’s because I’m still on furosemide, but I can’t come off it because my right leg is still too big. On Monday I’m texting Igor. 

I spent my morning reading the paper, and being rubbish at the puzzles. Then a fairly leisurely afternoon of sewing up Mandy’s bear and finishing off season 3 of Dexter, then painting my nails. 

I heard news of another one of the Alton Towers girls having her leg amputated. I feel a bit bad for the two of them, because it will change their lives to a degree, but frankly, not that much. To be honest, I’d rather have lost a leg than the full function of my lungs. They’ll have some rehab, then what will it stop them doing? Nothing. They’ll get loads of compensation to buy a fancy prosthetic leg and probably pay for some counselling. They’ll be fine. 

I’m not bitter, not bitter at all. 

The 27th of May.

Very, very tired. Woke up at 5:25 coughing and got up at six, because we needed to leave early to deal with rush hour traffic on the way to the station. All the assistance stuff went very smoothly, and Heidi met us at Bristol. I have her Rufus the Lion (he’s a bad plumber) and we went to Real Adventure, the ad agency she works at. I still have no voice, so I waved at everyone and sometimes whispered.

Everyone gathered in a wee auditorium and the was a little presentation, Mommy read a short speech that I wrote, there were some pictures from fund-raisers they’d done like running marathons, doing a Tough Mudder, and eating lots of doughnuts, then the cheque of over £4600 was handed over. It feels so good to know that at least 46 donors will be registered and possibly lives saved with money raised in my name.

Afterwards, Heidi took Mommy and I for lunch at Hart’s Bakery. I had a flat white, a ham hock and cheese toastie, and a slice of toffee and banana came. It was all incredibly delicious, and I am still full! We arrived back at the station really early, so we just got magazines and more coffee and people watched until it was time for our train. I had several major coughing fits and an old lady offered me a sweet but I politely declined, we went past a field of tiny horses and also Hallfield so I was really happy, then we got a taxi home.

Now I am in my pyjamas and pooped.

The 28th of May.

I took two Zopiclone last night and they didn’t even work – I just can’t stop coughing and it is driving me round the bend. I think I slept a bit this morning, but it’s so hard to tell I get as I wake up coughing so much. It’s the worst kind of relentless tickly bastard cough that just taunts you. 

I bought some Hudson sandals in the ASOS sale back in April, but when they arrived, they were too big, and were sold out in the next size down. I was really annoyed because they looked really good, so have been hunting for them ever since, and found some on eBay for £20! Apparently the heel on one is slightly higher but I can’t tell, and I tried them on this morning, and they fit, so hurrah!

Becky came round this afternoon as I haven’t seen her for ages, so I communicated as best I could and it was nice. I’m not expecting my voice to return until the weekend at the earliest. I hope it doesn’t take too long – I’d like to be able to order my own food at The Hand and Flowers next week.


The 5th of May.

Well my dreams last night weren’t horrifying so that was pleasing. I did wake up to some GvH on my back so I’ve gone back to 5mg of pred and the cream to get on top of it before it becomes anything.

This morning we went into town to get the new Jeffery Deaver book and some flip-up sunglasses for Daddy, and we picked up our train tickets for the 15th and 16th – at the end of the holiday, Mommy and I will get the train to London, and on Friday night, Christine, Kim and I are going to the Channel 4 Comedy Gala, then on Saturday, Mommy and I are going to the forensics exhibition at the Wellcome Collection.

This afternoon, I’ve been on my own, so rattling through things on the TiVo box and I made the other three legs for Seamus. I’ve got Rufus the lion next, then a duck.

I am so looking forward to going to Lyme. The election will be over and I can breathe the sea air and do nothing (even more nothing than I already do).

The 6th of May.

Last night I had a very long, complex dream which at some point involved catching fish on a beach and lots of travel. I must stop writing about dreams because people hate that.

This morning was nothing of note, then at half past twelve I was back at the chiro, and everything is pretty much fixed in my back now. There was no kneading of my bum muscles today. Back after holiday, then hopefully we can start stretching out my visits again.

This afternoon, I’ve been trying to back up my iPhone again, but to no avail. I did manage to get my music sorted but it still failed to do a proper backup. Bah. I will do it eventually!

I’m so glad the election is tomorrow and the campaigning will be over (if there is no need for another one in six months, please God). On Friday I will just be plugged into my iPod so as not to hear all the speculation about the (hopefully) new government.



The 3rd of May.

Oh fucking hell can’t I have a non-drugs-induced sleep without seriously messed up dreams? Last night, Bart Simpson was my brother who went on holiday to Spain and became obsessed with ham and somehow this resulted in me having my eyes pulled out. Then I dreamed I was covered in scabs and couldn’t stop bleeding. So neither of those were fun.

This morning I started Sir Nigel’s marmalade, watched Sunday Brunch and made Seamus’ had. After lunch, my hair got washed and Mommy’s got dyed, then I spent a good hour on my bedroom floor, tidying piles of paper and sorting stuff for charity. It resulted in a sore back but a slightly less messy bedroom. I did say I’d start sorting it once I was feeling up to it.

Since then, I’ve caught up on Agents of S.H.I.E.L.D. and read the weekend Guardian magazine with Rebel Wilson and I love her so much. I’ve also been told “fuck you” by Jamelia which is amusing – I must have struck a nerve. I saw she is some sort of ambassador for a selfie/self-esteem campaign and was flabbergasted by her sheer level of hypocrisy. She didn’t like that.

The 4th of May.

Resorted to Zopiclone again last night. I’ll try without tonight and just keep my fingers crossed. I would really not like any more disturbing dreams.

I got up at half past nine and spent an hour of the morning making a leg for Seamus, then I developed a really dreadful headache, like the blood pressure headaches I’ve had before. It took two co-codamol and a good few hours to go away. It’s pretty bad when a headache causes me to physically grimace.

Once it was gone, Daddy took me to the gym, where The Boy Who Smiles At Himself turned up. He was very frustrating today, spending at least an hour on a mat while basically just reading newspapers and magazines, and very occasionally doing a few bicep curls. He also did some sit-ups in a very bizarre way, holding onto his ears, almost using them to haul himself up. Had the other mat not been free, I would have had no problem asking him to move. There was also a woman using the leg press in a very weird way, barely moving six inches back and forth and bouncing up and down. I really couldn’t see how she was gaining any benefit from it.

Oh, and guess who deleted their tweet last night? Methinks get manager realised she did not come off particularly well in our exchange.

The 17th of April.

Awake at half past five. Why? Stupid brain. I tossed and turned for a llittle bit, started listening to the Today programme, then got bored and watched an episode of Dexter. Mommy day my light was on so she came in to say hello, and I asked her to bring up my Tramadol so I could take it and give it a chance to start working before I started moving around.

I spent my morning frantically finishing Michaela’s black sheep, working right up until quarter to one when Daddy and I had to go to hospital for more bloods. Clinic was totally empty as it hadn’t started yet which was lovely, and Igor appeared promptly. All my cultures came back negative, but my CRP (infection marker) was 200 (it should be less than 5) so he wanted to make sure it was going in the right direction. We looked at my x-ray which showed no fractures, but the spaces between my vertebrae are smaller than they ought to be. If the pain doesn’t go away then I’ll need an MRI. Got some antihistamines from pharmacy as Tramadol makes me itchy, then Daddy took me to Black Sheep!

I got to see baby Blossom (so small!), and it was so nice to see Michaela back! I told her and James that I wanted short and vibrant, so now I’m a pink and blue pixie and I love it.

The 18th of April.

Three episodes of Dexter this morning. Plus several podcasts before I actually fell asleep. I’m so mad at my body because I’m not even on steroids – I ought to be able to sleep! I had my Tramadol upstairs already so I had it about forty minutes before I actually got up. After breakfast, I went through the weekend Guardian which took up until lunchtime.

This afternoon, I have finished Anna’s elephant and taken a frankly absurd amount of selfies because I am obsessed with my new hair. I feel pretty great about the way I look right now. Super fly. Yesterday, Michaela couldn’t get over the change in my face, which Ram also noticed, and I’m just like “Yes! This is what I’m supposed to look like! Do you now understand why I get upset about looking different “?

My right foot is swelling again a little so I’m taking furosemide but it’s still quite uncomfortable inside my slipper, so I might have to lie on my back with my legs in the air for a while. I’d also really like to go back to the gym but the pain hasn’t improved enough yet. And I have ulcers in my mouth that are not cooperating with the treatment I am doing, so tongue injections are a possibility this week.