The 9th of May.

Second catch up sleep completed. I reckon I probably have one left before I am back to normal, but that won’t be tonight because I have to get up at six for ridiculously early lung function tests tomorrow.

I wrote up a blog post this morning, but I haven’t sorted out the photos and stuff so it is yet to be published. I was upstairs getting dressed when I got a text from Mommy warning me of the imminent presence of the window cleaner (she had just gone out so saw him further down the road) so I dove behind the bed to protect my dignity. Turned out that wasn’t necessary because he didn’t appear for another forty five minutes.

After lunch, I went with Mommy to pick up Grandma from lunch club at church, then after dropping her off at home, we went to the QE for my follow up with Mr. Kolli. He had a look at my lashes which look good, although the right eye will need to be checked again in a couple of months. He also checked my pressures which had gone up to 25/26 which is bad. Have to start doing steroid drops once a day and in a month he’ll check them again. Hopefully I continue to be asymptomatic, I can stop the steroids and my pressures go down. If that doesn’t happen, I’m not sure what the plan will be. My eyes explode.

The 10th of May.

Well I definitely did not have a great sleep because just as I was dropping off, I heard a dripping sound. The rain was coming through my ceiling. I had to go and wake up my parents, who did what they could (at midnight) to stem the flow. Thankfully the rain stopped and has stayed away, but it’ll still need fixing because it’s very near my head.

Then I was up at six for my lung function tests. We arrived at hospital at eight, and I saw the same girl as I did in November, and I had to get in the box again. I think my lungs have got to a level of shitness that requires a specific test that can only be done in the box. I was in there for nearly an hour because I had to do two of the tests three or four times, plus she is nice so we were chatting.

I then sat and read my book for an hour and a half while Dr. Thompson saw the patient before me (for ages). When it was finally my turn, I was in there for about ten minutes? My results are the same as six months ago, so that’s fine. We talked about him putting the kibosh on my second liver transplant and everyone saying I would die, but five years later here I am, no second transplant, no more superbugs. He was glad I am not suing them for emotional distress. As if I care; I am just glad to be here. He couldn’t believe it was 2013. Here I am, still defying the odds. Having conversations about how long my 23% will keep going for. We don’t know.

The 3rd of May.

I woke up at 5am. Like I’m not going to be sleep-deprived enough this weekend. I couldn’t even force myself to stay in bed as long as I normally can so I was up at half past seven.

Still, it meant things got done. Mommy made some bread, then we went into town where I got some lipstick from Selfridges and a box from Paperchase so I could send Esmée the fox to John and Maddie. We were home by half past eleven. Then Mommy went to vote (I already sent off my postal vote ages ago) and I watched Riverdale.

After lunch, I sorted out some clothes to take to Mach, then sat and watched more of Scandal. I’m nearing the end of season 5 so if I commit I think I will do this. I don’t think I’ve watched so much of anything so quickly before. I also put the luggage tags on the dogs, so all that’s left to do is pack in the morning! I’m so excited.

The 4th, 5th & 6th are pictured.

The 7th of May.

Oh boy, I am so tired. Beyond tired. I think I had about five hours of sleep and considering that’s on top of two short sleeps, I am wiped. We had to be out of the house by ten, so I got up as late as possible, but still spent most of the journey home with my eyes shut, cold from the air-conditioning and in agony from my back. When we got to the services, I had a second coffee and broke out the Pom Bears I bought yesterday which perked me up until we got home.

I curled up in my armchair as soon as we arrived, and we watched Professional Bake Off while having lunch. Then, while the rest of the country was basking in the sun, I went upstairs, shut my curtains and had a ninety minute nap. I am never tired enough to nap unless I am ill, so fingers crossed this is an anomaly.

I couldn’t stay up there all day, so I had an iced coffee to try to make sure I stay awake until bedtime. I’ve put up a bunch of photos and videos from the weekend. I don’t know how to write about it. Maybe just photos.

The 8th of May.

Sleep last night was so good. A solid ten and a half hours, oh it was beautiful. My bed is the best.

It’s been a quiet day – the start of a week of recovery. I have a couple of appointments and a gig on Friday, but the rest of my time is going to spent doing not a lot. I might go to the gym on Thursday, but that’s only if my early morning lung function tests haven’t worn me out.

So, I have been sat in front of Scandal, keeping my fingers busy crocheting nothing of note, resting my back. This evening I had a chiro appointment, and that was incredibly necessary – so much kneading of knots in my neck and stretching out my back as far as it would go. I’ve had the ice pack on my neck since I got home. Looking up for three days straight is really bad for one’s muscles. 

 

The 1st of May.

It’s our last day with Little Pidge! Shaki rang this morning to discuss arrangements for her, because she’s off to Exeter tomorrow. Shaki will be here about quarter past eight in the morning, so I’ll say my goodbyes tonight. I’ve written up some bullet points about her but it’s very basic. She’s a good kitty, I’m sure once her wound clears up she’ll be homed really quickly because she is lovely.

This morning, I wrote up a blog post, we cleaned Little Pidge’s wound, then I wrote the little bios of the dogs I’m taking to Mach on luggage tags. I also managed to help out a girl who’s going and was looking for tickets for some shows, two of which I could assist with. We’re going to go to a couple of shows together, so I’ve done a good deed and made a new pal!

After lunch, we popped to Tesco to get some instant coffee for Wales. Last year I had none and was sleepy until I got into the town every day. I bought mochas because they’ll be slightly less awful than the lattes. It’s a last resort.

Then, I sat with the cat and we watched Scandal some more. Tomorrow I won’t have my companion!

The 2nd of May.

My back is dreadful this evening and that does not bode well for this weekend. Two very long journeys (well, three-ish hours) are bad, just sitting in the car. Today all I’ve done is sit in the living room. I think I’m just going to have to drink enough to not notice the pain.

The weather has been horrific for most of the day, and I had a book being delivered (new Joona Linna eeeeee), so I decided not to go to the gym. Instead, I put together the present I’ve made for Esmée, then tried to come up with a way to occupy myself for the rest of the day.

We’d just started to eat lunch when I looked at my phone, and found out that John Underwood died two weeks ago. I am stunned. I have known him for a few years, since before his transplant, and we talked a lot about GvHD and how it is to live in hospital. He’d had his ups and downs, but he had seemed to be improving. It was slow, but he was taking steps, both literally and figuratively. I don’t suppose I will ever know what happened and that is difficult. I suppose I’m just in shock. I did not see this coming.

The 29th of April.

I’m going to be straight with you – today has not been very interesting.

I was happy to see Tom on Sunday Brunch and he was on top form (and very well dressed I might add) so I spent my morning watching him and writing up a blog post. We tried several times to clean the kitty’s wound (I’m going to call her Little Pidge because because she mews like a pigeon with a sore throat) but she was really very cosy in bed and we couldn’t bear to disturb her. I also ordered some more wool using one of my birthday vouchers to make another jumper, with a different pattern. Got to decide what to make for new baby Esmée.

This afternoon, we persuaded Little Pidge to get out of bed with treats, I painted my nails three times (let’s not go into detail, it was a mess) and I started season 5 of Scandal with the kitty on my lap. I have two weeks to watch two seasons and for at least four days I’ll be without time or Wi-Fi. Going to be a challenge.

The 30th of April.

I’ve had a rather productive day!

Up and dressed in gym wear, listened to The Riverdale Register, and cleaned Little Pidge’s wound before she had settled down to get cosy in her bed, and decided I’d have my gym trip before lunch.

Once I got there, I’d just done my first set of squats when a lady came over to me. I took my headphones off to talk to her, and realised it was the mother of a guy I went to primary school with. She checked that I was who she thought I was, then we had a nice albeit brief catch up on how we both are, what her son’s up to, how my family is. Then we both got back to our respective workouts and I’ll probably see her around in the future. Small world! Upstairs, I did my usual routine, then at the end I decided to get on the BodiTrax machine to see if there’s been any change since I first went. Pleasingly, my fat percentage has decreased by 3.2% or 1.9kg, and I’ve gained 0.9kg of muscle, do everything is going in the right direction! I also discovered, through standing up for the time it took, that the steroid injections probably haven’t worked. Maybe I need a second set, maybe I need more time, or maybe this is it. I don’t know.

When I got back, I had my lunch, then watched the last two episodes of How to Get Away with Murder and crocheted some of Esmée’s gift, before going to sit with Little Pidge and watch more Scandal. Powering through.

The 27th of April.

Baby news! No, not royal baby news, couldn’t give a monkey’s about Prince Louis. No, John and Maddie (whose wedding we went to last summer) have had their baby! She is called Esmée and she is small and pink and angry-looking but I’m sure she’ll cheer up soon.

I’d just got a blog post written up when Denise arrived with a kitty for me! She (the cat) had been taken to the vet by someone wanting to put her to sleep, purely because she has a wound on her side, we think some kind of allergic reaction to a bite, and they couldn’t cope with it. But Brynn didn’t want to do that when she is so young (we think only about a year old) and otherwise healthy, so he called us. We have to clean the site with hibiscrub every day, but she’s very friendly and amenable so hopefully it shouldn’t be a problem.

I stayed with her for an hour until we had to go to the QE to have my right eye done. Thankfully, because there were only three lashes together, Mr. Kolli wanted to get me done first and quickly which I was only too happy to go along with. It was him doing the procedure today, and he did just the one injection. However, today’s was the most painful I think I’ve had. Still, it worked swiftly, he zapped the rogue lashes and whacked the patch on. I had my custard creams, then was discharged to spend the afternoon trying to ignore the itching and sitting with my new friend, who we can’t decide on a name for.

The 28th of April.

It has been a very good day!

I woke up a little bit early and watched Riverdale in bed (#JusticeForMidge) before getting up and dressed to see Adam this morning.

I got to Yorks just before him, swooping in on a table as two guys left it. Vulture skills. He popped up behind me as I was about to message him so we had a big hug then got coffee and cake. He told me some very exciting news which I will have to keep secret for a while but I look forward to it being shared. I got to give him the little cinnamon bun I crocheted and he is going to put it on his Dean shelf. He told me about how things are going at Oxford and I told him about Porno Live because he is a Belinker too.

Daddy came to pick me up because we had tickets to Infinity War at half two, so we had another massive hug and Adam went back to the station while we got in the car. I can’t say anything about the film but I have a lot of feelings. I nearly did a cry, but I also cheered a lot. It was very stressful.

Back at home, I got the new kitty (still can’t decide on a name) to fall asleep on my lap! Cat Whisperer is me.

 

The 25th of April.

My back was a bit sad this morning but I can’t take that to mean anything yet. I’m going to give it a week, then make a decision.

I had to be up early because I had an appointment at the GP at ten to discuss my prescription. The hospital decided they should probably take over my regular drugs and because there are so many, it seemed to make sense to make an appointment to go in and go through it with them because enough mistakes have been made with them in the past for me to be wary. It turned out that some of my concern should have laid with Sridhar who wrote the letter to the GP because he got several of the drugs/doses wrong which is not helpful. Thankfully Dr. Bagchi is very sensible and knows to believe us about what we need vs. what might be written. Now we have all that planned, it should be fine when I next need to get some drugs. She called me “motivational”. That’s me, Little Miss Motivator.

This afternoon, we caught up on some of the tv missed last night, and then Mommy went to Grandma’s while I sat and crocheted my jumper sleeve while watching iZombie and Buffy. Tonight I am out again, this time for the My Dad Wrote A Porno Live show with Sadie! We are very excited. I’m having dinner with Mommy and Daddy first because they’re going to go to the cinema to see the Potato Peel Pie film, which is fine with me as I have no interest in that.

The 26th of April.

Oh, I fell straight to sleep last night. Porno Live was excellent, hilarious and harrowing, and I had just enough wine to not dream, but not so much that I felt the effect this morning. Perfect amount of wine.

Spent the morning in my pyjamas, finishing up the second sleeve of my jumper, then I went to get dressed for the gym, putting on one of the four pairs of leggings Sadie bestowed upon me last night.

I did more in the gym today than on Tuesday. Not everything I usually do downstairs, because there were people in the way of the equipment, but got along happily with everything upstairs because there it was almost eerily quiet. I stared at a girl for a bit too long because she was so strong and I wanted to be her. There was also an old man and I didn’t particularly want to be him but he was carrying a sweater that looked ever so soft that I kind of wanted to wear.

Back at home, I’ve watched some Buffy and Scandal, and I’m going to start assembling my jumper.

The 23rd of April.

It has been a very boring day.

This morning, I wrote up a blog post, sewed up the seam of the first sleeve of my jumper, and got very bored of hearing about the new royal baby. So much baby news. Now he is born and home, one hopes it will die down once we know his name.

I had an ultrasound with Andrew at one, to check if there were any strictures or thromboses in the lower arm. After checking all the veins, and looking at the visible tissue, it seems my veins are fine, there isn’t any fluid anymore, and now there are just fat deposits in my arm for no reason! So I’m going to get back in touch with Anne Dancey to explore my options. I can’t leave it like this.

Then we had two hours to kill, so we bought some crap sandwiches from WH Smith and read our books. Much book-reading today. I finally went in to the x-ray suite at quarter past four, where Dr. Blaney was waiting. I lay face down, trying to breathe comfortably. My lower back was exposed, and I then had an x-ray probably every twenty seconds while Dr. Blaney did lots of injections. I think he was doing some local anaesthetic, then putting in a bigger needle and using that for the steroid. It took maybe five to ten minutes and was slightly uncomfortable, but not enough to put me off having them again. If they work, that is – it’s hard to tell at the moment. They might work immediately, it could take a few days, or they might not work at all. If they don’t, I don’t know what I will do.

The 24th of April.

Well, I think I might very tentatively say that my back may be slightly improved?

This morning it was quite tricky to tell, because I didn’t do anything to really test it out. I got up, had breakfast and coffee, and listened to The Riverdale Register while getting dressed for the gym. Mommy and I printed out all our tickets for Mach so they are sorted in folders for when they’re required, then I did the first two rows of the second sleeve of my jumper.

After lunch, I went to the gym for a short session. Partially because I didn’t want to overdo things, and partially because Mommy had to be at Grandma’s for twenty to four, so I needed to finish earlier than I usually do. Basically, I skipped all the stuff I do downstairs, so I just did the circuit of machines upstairs. I didn’t have the pain I was experiencing last time, but that was a very bad day. The pain is definitely not gone, but I think it might be a tiny bit better.

Tonight I am out at the mac seeing Tez and the seats there are not the most comfortable, so that might give me a better assessment.