Archives For eyes

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 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 17th of April.

I was supposed to be out tonight but I decided against it; felt like more trouble than it was worth.

This morning, I put up a blog post, then went back upstairs to put gym clothes on and try on the jumper I finished yesterday. Doing it with a smaller hook has made it fit me just right – I’m glad I didn’t go half a millimetre less or I’d be in trouble.

After lunch, I went to the gym. Had a very productive session, and all the youths are back at school so not getting in my way. I had to keep giving people looks that conveyed “No, I haven’t been punched in the face, please don’t ask me any questions”. It ranges between purple and yellow at the moment.

Got home at about half four, and I was going to get changed, have dinner and we were going to go back out. However, from looking at Twitter, the recording tonight is massively oversubscribed so there’s no guarantee I’d get in, Steve isn’t working, then there’s the palaver of picking up Daddy from the airport before me. It all just felt like much hassle and I can’t be arsed so I am staying home and I’ll hear it when it goes out.

The 18th of April.

One day of sunshine and all the men take their shirts off. Seriously, it warms up even a little bit and we are forced to view all the torsos in the land.

I did not much fancy sunbathing. I had an appointment with Trine at eleven this morning, so I had to deal with all the necessary pain that comes with that. The right side of my lower back has been really bad so I could’ve let her work on that for the whole time, but my neck has its own troubles. Love the squeezy painful pressure and ice.

After lunch, I have binged on Scandal and crocheted. The other jumper again, but longer and hopefully not so itchy. I also rang the QE’s eye department, because someone there had got confused and cancelled my appointment with Dr. Barry in May and rescheduled it for July with Mr. Kolli. I can understand why, but I had to explain to them that I see two different doctors for different reasons within the same clinic. It’s complicated.

The 15th of April.

I had planned on getting some things done this morning, but it didn’t quite go the way I’d hoped.

Had breakfast and did my blog post, then I completed the last few rounds of the second sleeve of my jumper. By then it was about eleven, and the handover of the Commonwealth Games to Birmingham was due to begin. However, nothing started happening until about half past, but that was when Mommy had to take Daddy to the airport because he’s gone to Disneyland for a work conference (yes, really). I kept watching, waiting for the closing ceremony to get good/relevant, but by the time Mommy got back (an hour later), the terrible speeches had only just finished. Finally, our Mr. Blue Sky bit was really well done; I was very proud of us! However, Brum the car was missing. He needs to be the mascot for 2022.

After lunch, I went upstairs to sort out my new business cards and update my blog logo so now my new glasses feature. And eventually I got back to the jumper, attaching the sleeves to the body and starting the yoke decreases.

Slightly purple shadow under the eye today. Lovely.

The 16th of April.

I have finished my jumper! Well, I have to sew up the armpits and weave in the ends, but that’s all. I think if I do another one with this pattern, I’ll have to come up with a different way to do the neckline, because I don’t like the way it ends up sort of cobbled together. Next, I’ll have another go at the other one.

Been a pretty quiet day for me. Just much crocheting. I had an appointment with the hygienist at two, otherwise I would have gone to the gym. She was very pleased with the state of my mouth – bleeding score of zero! Don’t let anyone tell you that you have to have an electric toothbrush to take good care of your teeth. I use a manual one and brush and floss twice a day, and I am doing pretty well. We ended up having an interesting conversation about the pros and cons of various methods of hair removal, mainly eyebrow threading. Conclusion being I am curious but more about my pain threshold than anything else. Speaking of which, she asked about my black eye and I’d completely forgotten about it. It looks much worse than it is.

The 13th of April.

I am not sure how easy it will be, but I’m going to try to write this with only one eye. It’s tricky trying to work out when the pen is going to hit the paper because I have no depth perception.

It’s been a really boring day, I’ll warn you now. I got a blog post done this morning, then we had to be at the QE for half twelve for my eyelash appointment. I was seen by the nurse just after one, then when I saw Mr. Kolli for the bit where he draws on my face, he said that for infection control reasons, my position on the list was going to be much later, so I wasn’t going to be done until half three at the earliest.

As I hadn’t got my two o’clock tablets and I’d finished my book, we decided to come home. Had lunch and drugs, picked up a different book (The Power), went back!

Mr. Kolli was more supervisory today. I was congratulated once again on my stoicism while being stabbed in the face but it really isn’t that bad. I felt it much harder to keep my eye open this time, but the doctor seemed to cope. Three big lashes, three fine ones. Hopefully I have some left! Then my whole eye was slathered in ointment and I have a double pad on secured with tape, which I can take off at bed time. I got some free custard creams for being brave, and here we are.

The 14th of April.

I have not quite escaped the bruising this time. Slightly less experienced doctor means more injections so I have several tiny pink blobs under the eye. Getting the tape off last night was not fun at all. I am very glad we have the stickiness-dissolving wipes because otherwise we would have ripped off half my face.

I have spent my day in the house, despite the sunshine. Never mind the miniature black eye I am sporting, there’s also the thrice-daiky ointment which only adds to the shininess. Makes a gym trip not top of my priorities list.

Instead, I have crocheted the sleeves of my jumper and finished season three of Scandal. I haven’t got to the end of the second sleeve, but I should by the end of the day.

And of course Theresa May has decided to join in with starting World War 3, so I’m going to start looking for a bunker.

 

The 6th of March.

Back to the crochet habit. Might as well!

I woke up still tired, wanting to stay in bed but I forced myself up. Rosemary was coming round for lunch, so we had no trips out. I spent my morning writing up a blog post, then I started another sausage dog. This one is brown and cream, which is not a combination one sees often in them but it’s in the book and if it looks shit then I won’t give it to anyone. Rosemary did like the one I’ve already done, in black and brown, because he looks like her dog, Otto.

While she and Mommy had lunch, I watched the first episode of season five of Agents of S.H.I.E.L.D. Absolutely batshit insane – jumped forward seventy five years into the future in space. Obviously.

This afternoon, I made the head and ears of the dog, watched some Bones, and booked Mac into the vet for his secretary vaccinations tomorrow afternoon. Got a viewing on Thursday.

The 7th of March.

Tired. Up early for hospital. Not haematology, as was also previously in the diary for today, just ophthalmology. Mr. Kolli, not Dr. Barry. Today was about rogue eyelashes. The clinic was running very late – they were missing a registrar – so I didn’t get seen until an hour after my appointment time. That was fine – I got a lot of Eat Up! by Ruby Tandoh read. I wish I could give it to my thirteen year old self and keep her from developing an eating disorder to begin with. I wish I’d be able to read that instead of Wasted.

He checked my pressures and they haven’t gone down very much, but he wants me to try to get the prednisolone eye drops down to twice a day before trying anything new. He’s going to get me booked in to do the left eye again, then do the right eye a few weeks later. It would be tricky to drive my chair if they did both at the same time.

We’d been planning on going into town to do some shopping, but by the time we got out, there wasn’t time, so we just came home for lunch.

Mommy went to Grandma’s, then when she got back, we took Mac to the vet. He was a good boy, just very chatty on the way! If only all trips there were so easy.

The 31st of January.

Today has been fine, although I got a disappointing email this afternoon so now I feel quite gloomy.

I had a better sleep, thankfully, and got up when my alarm went off. I wrote up a blog post, then I got back to work on Woody. The leaves, for want of a better word, of the pine cone take ages, and I have to sit in a position that is really uncomfortable for my back while doing them which is not ideal.

After lunch, I finished the pine cone bit off, then I decided that I was going to do some exercise. It was one of my New Year’s Resolutions to start working out again, even if it was much less than before, because I can still regain some muscular strength, even if I can’t do things I’d do in the gym. So I got out my yoga mat and did some very basic stuff, mainly on the floor for about half an hour, which was enough.

Since then, I got an email from Anthony Nolan about the blog I wrote for them. They want to publish it on Friday, but have edited out a lot of the best and most important parts, because they are either “scary” or “don’t offer a shared experience” for patients reading it. I wasn’t writing it for potential patients, I wrote it to be published in the press somewhere and why will they pick it up now a massive chunk is missing? I’m aware my story isn’t very inclusive for other patients but my uniqueness is exactly why it’s so incredible. I can still put it on my blog but what’s the point when the audience is so small?

The 1st of February.

It is too cold, bleah. I had to have my extra blanket in bed last night, but I at least had a decent sleep.

This morning, I did much crochet. Simon the snowman now, and currently he has legs, a body and eyes. Very productive, but not very interesting.

After lunch, we had to go into town because it was time for my eye test. I had a long chat with the optician about what’s been going on since my last test two years ago, when I had the eye GvHD but hadn’t started any treatment. We went through all the drops in currently using, and I showed her my last letter from Dr. Barry on myhealth which was useful.

My eyes are a bit worse, as I suspected, so I’m having a new prescription and I decided to try on some new frames as well to see if there was anything I preferred to the ones I currently have. I tried on several pairs, and have chosen a green pair by Jono Hennessy, who did my previous pair, so they’ll arrive in 5-7 days. I’ll have to come up with a new logo for the blog!