Archives For prednisolone

The 24th of December. 

I am quite the walking disaster zone. When I do walk, anyway, that is to say my feet feel like they’re covered in blisters, so putting any pressure on them is horrific. For a while this afternoon, I put them in a basin of cold water and briefly, they were soothed. The skin on my back and chest has been so itchy, I’ve been rubbing up against things like a bear, and my tongue is developing ulcers like nobody’s business. I’m doing mouthwash and spraying them with steroid but I’m not sure it’s having the desired effect. The torso rash could be explained by the antibiotics, and i finished them this afternoon, so by tomorrow evening it should have calmed down if it’s going to. If things continue though, I’ll be going back on steroids. 5mg to start with, and I’ll have to go back to hospital so we can come up with a proper plan. Just what I wanted for Christmas, the return of the desire to commit suicide. 

So I’ve done fuck all, just trying not to think about all the different forms of pain I’m feeling and focus on having a happy Christmas. Even if we all feel like shit (except Mommy, pray it stays that way), we will have a nice day. We are having the first fire and it doesn’t seem to be making my cough worse, not sure about anyone else, but hopefully we can keep them going this year. 

The 25th of December.

Merry Christmas! Mine started with being woken up by Mommy because everyone else was awake and Christine was starving. I got up as quickly as possible and padded down the stairs, wincing at every step. My feet are agonising all of the time – I think the last time they hurt this much, I was on cyclosporine. 

We had our traditional Christmas breakfast of bread, eggs, cheeses, meats, game pie, plus all of the condiments. I had a breadbun so floury, I had to be vacuumed. Covered, I was. 

Back upstairs, Christine and I opened our stockings. Mine contained some touchscreen gloves, tissues, a little Lindt bear, a Hotel Chocolat star containing chocolate snowflakes, a maze puzzle/game, Lulu Guinness vaseline and a Christmas tree brooch that should flash but doesn’t. Never mind. I put my Self-Portrait dress on with leggings, my cashmere socks and massive cardigan (to accommodate my arm) so I was working a very glam/cosy look. 

Mommy went to pick up Grandma, and when they returned, it was present time! I did not partake in the champagne drinking because that would only make my mouth worse, so everyone else had some while I distributed the presents. I hadn’t realised quite how securely I’d wrapped my presents so it took people a little while to get into them. Then again, that just made it last longer. I was given the Mrs. Christmas Pandora charm, a voucher for Wool Warehouse, a bag of Jelly Babies, some coffee beans, more Bucks Fizz marmalade, all the books I asked for (The Girls by Emma Cline, Where Am I Now? by Mara Wilson, Playthings by Alex Phelby and Hard Boiled Wonderland and the End of the World by Haruki Murakami), a book about the art of The Little Price film, a Moomins calendar, two Essie nail varnishes, The Little Prince Moleskine diary for 2017, some thermal tops and socks, some very soft and cosy festive lounge trousers, and a mug and bowl with kitties on. Then Mommy and Christine went to finish the cooking of the dinner, and I looked at my book about The Little Prince. 

I ate my lunch rather slowly, having to chew on only one side of my mouth, but I did not finish last because I tend to have less than other people. We had a little rest, then pudding. Mommy had made me a chocolate mousse, and that was much easier to eat. 

After lunch, we decamped back into the living room, where we started the fire and I put my feet into a bowl of cold water again. I cannot describe how painful it is – like knives in my feet, all of the time. The steroid cream on its own is not working, so I’ve started back on 5mg of pred today. I’m going to get a moon face and become incredibly depressed again, but we don’t have a choice. 

We watched Christmas Bake Off, then the Easts came round for Doctor Who present swap. Becky was very pleased with her “Go away, I’m marking” mug and Toft teddy bear, and I got a ten pack of Paintbox wool, so I can make many colourful things. 

We had Doctor Who on pause for nearly an hour before getting it started, so when it was finished, they returned home to do their final lot of presents, and we settled in to watch Strictly with Christmas cake. 

It may not have been the perfect Christmas, with 3 of the 5 of us being ill (4, if you include Grandma’s general difficulties), but we are all at home and together, and that is what is most important. 

The 22nd of March.

Well I am just thrilled to be telling you that Oscar the smushy kitty that I want to catnap was just in our garden, so I decided I’d see what he’d do if I opened the door, so I unlocked and opened it, and he didn’t run away! So I went onto the patio and after a little bit of coaxing, he came up to me! He smelled my hands, then once that was alright, he let me stroke him! However, Mommy then tried to take a photo and her presence scared him back down the garden. I gave him a minute, then slowly followed him and we had another little stroke on the step of the bridge. Then he decided to go and play with the frogs again so I thought I’d leave him then. But I’m so happy!

I had a Zopiclone last night let myself sleep until just after ten, but then I did feel it was time to get up. I watched Sunday Brunch, had lunch, then we washed my hair. This afternoon, I’ve crocheted an apple as I can’t finish the bunny until my new wool arrives. I then got ambitious and tried to start a pair of socks, but I was incapable of deciphering the pattern, so that project was unravelled. I might try an aubergine.

Two days off furosemide and my right arm is starting to get boggy.

The 23rd of March.

At least it seems the 5mg of pred is working. The rash is slowly fading, and last night my toes weren’t as itchy. I think the fingers and toes have been helped by using a stronger steroid cream.

We went out late morning for a trip to Sutton that was rather unsuccessful, as I only got one of the three things that we went for. I’m at the dental hospital in the morning so we can try again in town. Anyway, I agree lunch in the car before my chiropractor appointment at quarter to one. It was much better than last time, so my next appointment is in four weeks instead of three.

Then I was back at the gym. Not so much entertainment there today, just a man who was jumping really high onto some boxes. It was very impressive, but I refrained from applauding after the first jump (I think it was the first time he’d done it) because I wasn’t sure it was appropriate. I am hoping he is an athlete or a policeman, not a criminal, as those are the only professions I could think of where you need to jump that high.

Tonight I’m finishing an aubergine I’m making for Christine. Hopefully my wool comes tomorrow!

The 20th of March.

I was woken by Mommy coming to tell me that the cute grey kitty with the short legs was sitting outside Christine’s bedroom window, and his name is Oscar! I now feel we must catnap him. I’ll put up posters saying “Is this your cat? NOT ANYMORE.” Then we watched the eclipse through binoculars on a piece of paper, before I was fully steroid-creamed and got dressed.

This morning I did a blog post, then shortly after lunch I went to the gym. I went earlier today so as to avoid the guy I keep seeing who uses the mats when I want to and it makes me irrationally annoyed. I did end up having a chat with a huge man that I have seen a few times, and he was asking how long I worked out for etc, and he thought I was a runner! I found this rather amusing as I’m not sure anything could be further from the truth. I don’t even have the physical capability to run.

As we got home, we saw Becky coming home from school, having spent her afternoon making cornflake cakes. Her dad has flu though so I didn’t get too close. I can’t afford to get poorly again.

The 21st of March.

Yeah I’m back on steroids. My fingers and toes get so goddamn itchy, especially at night. I couldn’t stand it any longer, and the rash hasn’t even got the slightest bit better. I decided to stop taking furosemide today too, see if my arms swell up without it.

Daddy and I went out at half eleven to see Chappie before it isn’t on anymore. It was okay. A lot of it was quite clearly a metaphor for God – “Maker, why did you make me so I could die?” I particularly didn’t like the scene in which the kids were throwing rocks and setting Chappie on fire – it was almost like watching child abuse. Also, everyone had terrible 80s hair which I couldn’t understand.

We then proceeded to watch rugby all afternoon, getting very stressed at the crunch. In the prelude to said crunch, I read the last bit of So You’ve Been Publicly Shamed and it was really good. So interesting. I should really read Lost At Sea, seeing as it’s upstairs. Apparently, I must read Them too. So they’re on the list!

Tonight, Mommy and I went to Bank to celebrate Lauren’s 21st birthday! My little one, being a proper grown-up now. I’ve known her nearly 10 years and I’m so proud of the woman she’s become. So the food came and the bubbles flowed and we drank to my friend. I am so full and tired. Sleepy bear.


The 21st of January.

It’s been a good birthday. Started with stopping steroids so that’s a bonus! For breakfast, I had Nutella-filled French toast which was delicious, obviously. Then presents! I got a waffle maker, a bag of Jelly Babies, Edd Kimber’s Patisserie Made Simple, and two (pending) Pandora charms from family. My new slippers were an early present from Grandma, and I got some wool and a book of adorable toys to make so clearly I’ve started one already. 

Mommy went to Sutton to buy my Pandora but they had neither in the shop, the Edd Kimber book and stuff to make Cubanos with so we had those for lunch. Amazing. Oh and while Mommy was out, the postman chose the time I was in the toilet to ring the doorbell. Thankfully I was able to get there!

This afternoon I began this crochet and Mommy and I have been watching TV. I’ve had flowers from Becky and Heidi, other crochet kit from the rest of the Easts, and we’ve had an indian and birthday cake for tea with Most. I spoke to Aunty Audrey at length as she forgot to send my card, bless her. All my lovely friends and strangers who aren’t really strangers sending me birthday messages, I love you all dearly. I’m overjoyed to just be here. I’m a little bit emotional. 

The 22nd of January. 

I hate how polar my emotions seem to be. Yesterday I was so happy, then I had a terrible sleep so I’m exhausted, I feel generally crappy, and my tummy feels off as well. 

This morning I went to Bad Apple to get my hair cut before goes off to have her baby, so I gave her the jellyfish I made for the baby when she arrives. We have cut my bob back in and I’m only allowed trims until she gets back. I’m going to see James on Tuesday so we can do something mad with colour, as I am bored. 

This afternoon, I really didn’t have an appetite, so I ate some soup, and I’ve just been working on my first animalaaa from the new book, but I’ve run out of wool so I’ll have to finish it tomorrow. 

I’m rubbish and uncommunicative.  





The 14th of December. 

Our tree is all lit up and decorated! I had a nice sleep with the help of a Zopiclone, and spent my morning watching Sunday Brunch and Mommy washed my hair. 

This afternoon, I have been detangling lights and choosing baubles to go on the tree. It’s so pretty now! I can’t wait to do my wrapping and put all the presents underneath.

The 15th of December. 

2 milligrams of pred! So close to being off steroids, my last day should be Christmas Eve. What an excellent present that will be! Oh, I’m crossing everything I have in the hope that everything goes to plan. 

This morning I had a wonderful delivery from the fabulous Grazia team! A box wrapped in a bag and lots of sellotape contained a little note and a CD with my photos on from last week which I haven’t had time to look at yet, plus a vanilla sugar candle, two O.P.I. nail polishes (Hey Baby and Taupe-less Beach), a Nails Inc nail polish, a Topshop freckle pencil, an eyeko shadow liner, two Revlon lipsticks (Stylist and Wardrobe), some St. Tropez skin illuminator, Windle and Moodie day and night cream, Laura Mercier eyeshadow, Christian Dior eyeshadow, Pür Minerals eye toner, Rimmel Wonder’full mascara and some Maybelline eyeshadow. A real box of delights!

This afternoon I met up with Elle and Luna who is now two months old! She was very late but it was fine as I had a book in preparation for some hospital waiting I was expecting to do. But she came and I got to have a squidge and even some smiles! She is such a beautiful baby, and I can see both parents in her face. Bah I love her.

Had a short trip to hospital for the ECP girls to have a go at my line – Sharon managed to get it flushing really well,but it’s still not giving anything back. We think a kind of fleshy flap has formed on the one side so you can flush through but when you try and draw back, it just sucks itself shut and you get nothing which is super frustrating. It’ll still be fine for ECP on Wednesday and Thursday though, so that’s fine 

Grazia tomorrow! Eee I’m super excited.  

The 22nd of November. 

I had a really big sleep (for me) until half past nine, and after I had my breakfast, Mommy washed my hair and I was able to get away with not putting quite so much product in it today as my face has started to decrease in size, I think. 

I was forced into going to see Interstellar today (I made a bargain with Daddy that if he came to Mockingjay, I’d go to Interstellar) and I hated it. 

I cried at least four times. When Cooper realises he’s missing his children’s entire lives, and when the professor dies, and when Cooper’s trapped behind the bookcase, so frustrated because he is watching the people he loves and can’t seem to communicate with them. It was everything I hate about my life and everything I fear about what might happen after it. 

When we left, I was just sad and angry. The film I saw yesterday made me want to use my voice to try to save people, and the one I saw today made me wish I was already dead. 

The 23rd of November. 

Six milligrams! I think this is the lowest dose of pred I’ve been on since the beginning of June, when I went from 0 to 20 overnight because the topical steroid wasn’t making my mouth and skin better. I do hope I’m able to continue in this fashion. 

I had to take a Zopiclone last night because I got sudden heartburn which I soothed with some Gaviscon, but then my body was all freaked out and I needed some help to fall asleep. 

Today I dressed incredibly comfortably in knitted jogging bottoms and my angry kitty sweatshirt. It’s nearly advent and I do not care; I will be an elf if I wish. I have spent my day being cosy and crocheting myself a snood. I’ve now run out of wool, dearie me. I have also watched many things on the V+ box – so much recorded stuff which I probably shouldn’t bother watching. I should finish reading my book. 

The 12th of November.

Very little sleep. As in maybe two hours? My body is fucked. I had haematology clinic where I saw Ram for the first time in two months after sitting around for a few hours. he said how I look so much better than last time, and how I seem to be in a better place, which I agree with. He trusts me to continue to taper my steroids – yeah I should think so! We had to wait an hour for pharmacy to do all my drugs, so we didn’t get home until about two.

Not a great deal happened this afternoon, but tonight is Katherine Ryan! Climbing up the stairs was really difficult but I think it was still easier than going around the outside. The amount of staff watching me mount the last few steps felt like an audience of people who are scared you’ll fall all the way back down and smash your brain. I was allocated a shitty seat, but I knew it was sold out so I couldn’t move elsewhere. However, they then realised that those weren’t my seats, and I needed to sit somewhere else which was a bit further away but higher so I had a better view. And I’d just got settled there when someone came to tell me I had to move again because I was still in the wrong place, and I actually needed to move to right in between a couple and two other dudes. I tweeted The Glee Club about it a lot at the time and they’ve ignored me which is unusual.

So I sat there and was grumpy to begin with, but the support act grew on me and then Katherine was really good. She greatly cheered me up, and I had a mug of chips and laughed a lot. She talked about teenagers, and one of the two in the audience was sat next to me. When I was 18, I’d just had a liver transplant.

Daddy was waiting downstairs when it finished, so he drove me home and I ate some peas and am going to bed.

The 13th of November.

Today has been a mixed bag. I had a terrible sleep, went downstairs and developed a very sudden, painful earache. Mommy went to Boots and got some earwax-dissolving stuff which we put in, and I decided I’d go out with Mommy for her to give blood while I had a coffee and watched the German market-goers. I also needed to replace another lightning cable, got a cardigan from Mango, and some Christmassy jogging bottoms from Superdry. The most important thing we did though was to visit the German Christmas markets which started today! I have had my first red sausage of the year and I’m really happy about it as for the past two years, I haven’t been able to eat anything because my mouth GvHD was playing up.

While we were out, before I had the sausage, I developed this very odd chest pain which felt really pressurised, and we couldn’t figure out what it was. Is. We only had about an hour at home before I had to be at Bad Apple for my cut and colour (selfies to come, worry not!) so we tried Gaviscon, Deflatine and general winding, but nothing has worked.

I managed to cope while I was having my hair done – apricot roots, pink ends, smudged in the middle. Messy and I love it.
Went straight to town again from Bad Apple and Daddy dropped me and Mommy off so we could go and see Henning Wehn at the town hall! I had a pretzel and a hot chocolate for tea.

Henning was ace, as I expected, and he tested his newest lecture for The Unbelievable Truth on us, so I’m looking forward to finding out if I spotted the truths. I had fun, but I think I would have enjoyed it more if my chest hadn’t been so tight and painful. We think it might be pleurisy, but we’re going to the QE in the morning. I just hope I get some sleep.