The 28th & 29th; This afternoon, I was under a blanket.

The 28th of June.

I feel pretty crappy. I’m still more breathless than normal, even though the cough is barely there now. I think I’m going to text Igor – get my bloods checked and see what he thinks about having a venogram. When I got downstairs this morning, I was coughing a lot from being all dry, so I needed a drink, but couldn’t move to get it and Mommy and Daddy were taking Grandma to church. I got to the kitchen eventually. Watched Sunday Brunch, ate brands on toast, had my hair washed. 

This afternoon, Mommy and I watched the start of a new series on BBC4 called Cordon from Belgium, and it’s pretty terrifying. The premise of that kind of aggressive flu epidemic is really scary. No wonder I wash my hands all the time. 

Daddy brought up the cheery topic of my will at the dinner table. I know I need to do one, but it feels like tempting fate. I don’t want to be ready to go. 

The 29th of June.

It feels like summer outside but not in my body. Still weary and cold – this afternoon, I was under a blanket. I rang the photopheresis team because I’m there on Thursday and Friday, and they said to go in to have my bloods checked. 

We had to wait until this afternoon, because this morning, Mommy was helping.Sheila with the toddler group round the corner. Jo took some blood and ran it through their machine, and unsurprisingly, my haemoglobin is on the low side – 9.2. They’re going to order some blood and I’ll go in early on.Thursday morning to have at least one bag before treatment. I don’t know why this keeps happening now. I eat enough iron. 

Since we’ve been back, I’ve ordered all the stuff for the hen do, so I’m getting quite excited about that. Party!


The 26th & 27th; I think my body’s just being pathetic.

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 24th & 25th; I have been crippled.

The 24th of June.

Bleah, I do not feel good, I did not particularly feel like getting up this morning. I had breakfast, coffee and wrote up a blog post before we went out to the QE for oxygen clinic. I took the new wheelchair and only made one error in hitting a doorway. I thought I’d have to do all the walking like I did in the assessment, but it was just a stab in the ear and a chat about how much I’m using, which I was grateful for.

When we got home m we had lunch, then Mommy took me to the gym. It was the first time I’ve been since I got the cough, and I was just going to see how things were. It didn’t go well. My heart rate was taking much longer than normal to come down, and by my sixth machine. I was just feeling sick and it wasn’t going to get better, so I dragged myself over to the mats so I could stretch, then got changed and waited for my ride home. I’m clearly not ready to go back yet. I’ll try again on Monday. I did see a woman with the best ass I have seen in real life though, so that’s something to aim for. 

The 25th of June.

Oh my God, I have been crippled by my gym visit. My bum muscles hurt so much, every movement is pain. I hobbled up and down the stairs to get some clothes – need to move my summer clothes upstairs. 

Mommy’s friend Rosemary came for lunch, and we had a bit of a chat about her new puppy, Otto, who it seems is quite scratchy. I still want to meet him though. He’s a sausage dog! She couldn’t stay for ages as she had to get back to him. After she’d left, I went to do some stuff on the iMac, and Mommy went to Grandma’s, so I then caught up with No Offence and Hannibal. 

This evening, I had an Old Hallfieldians Society meeting where I learned many things, like how our treasurer was at school with Hugh Bonneville and Nigel Farage, and he and Farage used to smoke together. Tim couldn’t give me lift home as he had a date with his wife which I think is adorable. 

After dinner, Mommy and Daddy laughed at me, heaving myself out of the chair, saying “Ow” with each exceedingly slow step. I’m not looking forward to going upstairs again. 


The 22nd & 23rd; My right leg is 4cm bigger than my left.

The 22nd of June.

I was so exhausted, I had a beautifully long sleep without the aid of drugs. This morning, I wrote up a blog post and made another bear leg. I’m being very slow on this creature; must do better and get it finished. 

After lunch, Mommy washed my hair and went to Grandma’s, so I watched Hannibal and Humans. Will Graham’s hallucinations are becoming a little annoying to me. But no doubt there will be more, so I’ll have to just get over it. 

I’ve spent a lot of the day being enraged by David Cameron’s latest wheeze to get rid of all the migrants who aren’t earning £35,000. It’s going to decimate the NHS. His son probably had foreign nurses, along with all the other staff who are part of the system. He obviously doesn’t respect any of the work they did. It’s like he’s forgotten he even had a disabled son. It’s the only way I can maybe understand the way he doesn’t give a damn about the people who rely on the NHS for a job and to stay alive. And no one ever questions him. 

We measured my legs and found that my right leg is 4cm bigger than my left. I am concerned it won’t go all the way down and I’ll need another venoplasty. I hope not. I really don’t want to deal with all that again. 

The 23rd of June.

I was not ready to get up when my alarm went off this morning, but I had to force myself out of bed as I had to go to the chiro for 10:45. We’re leaving it two weeks this time, so once my foot is back down, I can go back to the gym. On the way home, we went to Pets At Home for bedding for Hamilton, M&S for crumpets, juice and other stuff, and then Tesco for stuff that wasn’t at M&S or was cheaper. 

This afternoon, I’ve finished all the bits of Mandy’s bear, just need to assemble it now. I’ve also shaved my legs and that’s about it. Not particularly productive. 


The 20th & 21st; I miss having everywhere.

The 20th of June. 

Back in London. Awoke about half nine, spent my morning writing a blog post which I then lost and had to rewrite in its entirety, which was frustrating. Read the paper, did the sudoku well and the crossword poorly, then had cheese on toast for lunch. 

Our train wasn’t until ten past four, but I was pleased to be there early as I’d forgotten my lipbalm so got a spare from Boots and a coffee, then hung about, waiting for the train. Our assistance man put us right in front of where our train door stopped, which was rather fortuitous, and it meant we got on the train before the rest of the rabble (it was a very busy train). 

The assistance chap was waiting for us at Euston (unusual), and having paid 30p for a wee, we got a taxi to the hotel in Shoreditch and arrived about half six. It’s all very fine, comfy beds, nice bathroom, so I’m quite happy. I’d booked a table at a place called Mr. Buckley’s which is five minutes up the road, having found it on Google maps yesterday and thinking the menu looked good. It was! Frozen pineapple and passionfruit daiquiris, then I had barbecue pork chops with sweet potato puree and a side of heritage carrots and peas, then chocolate cake. Extremely full. 

Now we’re back at the hotel, slightly damp from rain and watching Harry Potter before bed. 

The 21st of June.

What a very sleepy bear I am. I didn’t sleep well, being hot, noisy Street, not my pillow. Never mind. We got up, dressed and packed early and went out to get breakfast in the Pavilion Café in Victoria Park where we met Christine, Kim and Will. I had a really good bacon sandwich, then we had to trek quite far into the park to find where Christine needed to be. Once she’d gone to get start funnel, we found a place near the start to cheer from, sufficiently embarrassing/encouraging her. She’d said she normally gets bored at about 7km, so we chose a spot near there where we’d see her on both laps, and we managed to spot her both times and Kim and Will held up their banner. We also saw her at the finish (near the biggest pile of bananas I’ve ever seen) but she was sprinting so she didn’t see us. 

We met back up with her in the Runners’ Village, where Kim and Will took their leave, and after going through Christine’s bag of freebies, we went for her to get some food, she and Mommy sat down and we rang Daddy to say Happy Daddy Day. After finishing, we wandered back towards central London, stopping near Bethnal Green where Christine got the tube home, and Mommy and I got a taxi to St Pancras to get lunch (they have better food places than Euston) before going to get our train. 

Watching everyone run was strange. I’ve completely forgotten how it feels to run. I haven’t tried in so long. I watch people get out of breath and they can somehow carry on, even when their muscles hurt. I can’t even get to that stage. My muscles don’t burn because my lungs give up first. I miss being able to run with the wind in my hair, feeling free. Go where I want, do what I want, get away. The new wheelchair will help with that, to a degree, but it doesn’t give me new lungs. I miss having everywhere. 

Back at home now, very tired and with a swollen right leg. More furosemide for me!


The 18th & 19th; Bizarre but brilliant day.

The 18th of June.

Another totally insane day in my life. This morning was nothing of note, really – I think my leg might have returned to normal but it’ll indicate while I’m in the chair all day, and my voice is nearly back too.Nobody has looked at me with concern when I’ve spoken. Hooray!

Mommy drove to the station where we were going to meet Daddy after having picked up the tickets. We were really early so then to kill time, we bimbled to the Bullring and back, having not found a birthday card for Aunty Audrey. On the way back, we bumped into Carol! So had a lovely (albeit brief) chat and we’ll hopefully see her next Friday.

We met Daddy in the mobility place, which was unusually busy, and Mommy went to get the train home so Daddy and I could drive home later. Our train was delayed and changed platforms, which makes me the most stressed person in the world, so I was getting increasingly irate. This was not helped by the couple stood directly in front of me who would not stop getting off with each other, hugging and stroking each other. NOT IN PUBLIC. Thanks.

When we finally left, the journey was fine, and as soon as we were off the train, Daddy power-walked us to the BBC. We got our tickets scanned and stickered outside the radio theatre, then we had time to waste before the show. We went and had food in the Caffè Nero opposite The One Show, so I ate my ham and cheese croissant while spotting people from the news (Huw Edwards and Lizo Mzimba, amongst others). At about half six, we went back to the theatre as I was waiting to hear from Sara about when I might see her, but then she tweeted me to say she was not poorly,but she’d emailed the producer and hoped everything was great. Bless her. I hope she feels better.

A handy thing about the wheelchair is that I get taken places first, so I got to sit on the front row. While waiting for it to begin, I got talking to the chap behind me who turned out to be one of the writers! Then Sandi came out and asked to be reminded of a name, which came out over the speakers and it was me! I raised my hand and she came over and gave me a brownie made by Susan Rae and we had a photo and I was so happy. Sandi!

Every one came out and they did the show (totally excellent, must listen), and after, while I waited for Daddy to get my chair, I had a chat with Susan about brownies, and the producer gave me the signed front page of Sandi’s script! Framing that.

Then Jo Whiley was on our train home! Just bizarre but brilliant day.

The 19th of June. 

Very big sleep. I set my alarm for 10am but then gave myself another half an hour because I could. So tired. When I finally got downstairs, just after eleven, I wrote about yesterday, and Kate came to flush my line. She commented on how I actually have a jawline and cheekbones now – she hasn’t seen me for at least three weeks. It’s odd, people saying how different I look, when actually, this is what my face is supposed to be.

This afternoon, I’ve just been watching TV and being very sleepy. Curled up in my chair a lot. My leg had inflated from me being sat in the wheelchair all day so it’s been up on a stool. 

I had a text from Becky saying bridesmaid dresses are due in the next ten days (fingers crossed)! Hoping her dress comes with them.

Must remember to do Daddy’s card and presents tomorrow before we go back to London.


The 16th & 17th; Less than a day left on the antibiotics.

The 16th of June.

Ugh my voice is still really croaky – I haven’t had a proper voice since the 25th of May and I would like it back now please. I think it might be taking so long because my mouth gets really dry in the night. Not much I can do about that.

I was back at the chiro this morning and my back is still bad – I got very stretched out in my lower back. I have to try to force myself upright when I walk or it’ll just get worse again,and I back in another week. Trine said she wouldn’t want me in the gym yet because it’s still so tight. Gah.

We went into Sutton afterwards for another trip out in my new chair (taking suggestions for a name – she’s a girl) and I got some handcream. I managed to reverse out of lifts without hitting anything so I was pretty pleased with myself.

The 17th of June.

I am so glad I only have less than a day left on the antibiotics because they are messing with my digestive system. A gram of fluclox a day is a lot!

This morning I made the head of Mandy’s bear, and tried to write for Lauren’s selfie zine, but my brain wasn’t in the mood for that. I know what I’m going to write about, I just wasn’t being very eloquent.

This afternoon, I painted my nails and Becky came over. It emerges that she’s doesn’t have gallstones, or if she did, she has passed them, which is a good thing, but it leaves a mystery as to why she sometimes gets so much pain from different foods. The wedding and bridesmaids’ dresses have still not arrived, which they should have, so that’s all a bit stressful. Hope they come in soon, I want to try my dress on!

I’m really excited about tomorrow. Eee!


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