The 15th & 16th; The words wouldn’t come.

The 15th of September.

I woke up at twenty to nine this morning! Oh it was glorious. I can’t remember the last time I slept that late. I can’t imagine it’s going to become a regular thing though. That would asking too much, I think. I go down to 10mg of pred tomorrow though. Getting there! We will have to slow the tapering after 10 though – I do not want to jeopardise this. My plan to be steroid-free by the end of October is still on track.

This morning, Mommy and I went to Tesco to find me something to have as my main meal at lunchtime as tonight I was out at an OHS meeting, and for some reason, I was craving vegetable curry. After a lot of searching, we did find some and some pilau rice and then I was happy.

This afternoon, I tried to write about photopheresis, but the words wouldn’t come, so I watched crap on TV instead. I wasn’t very trembly today and it feels like a waste.

Then tonight was the OHS meeting. We actually had a quorum! Things got a little bit tense at one point, but were salvaged by an excellent idea from the headmaster and after a good hour and a half of chat, I got a lift home from Shiva and collapsed into an armchair. Bedtime.

The 16th of September.

I took 10mg of pred this morning and by tonight I’ve noticed all the blood vessels in my hands coming up so I had another 5. It’s fine, we just can’t jump in 5mg increments though. Need to taper a little more slowly.

My sleep the other day was a one off – I was up at ten to five again. So tonight I’m tired, cold and trembling. It’s been a very quiet day – I didn’t go anywhere. Although the majority of this afternoon planning a trip to London to eat things. I realised I don’t need to go to all the places, so I culled a lot and now we’re going on the 16th of October, yay!

Becky came round to tell us about school. It all sounds so stressful. Children are little shits now. I would never have dreamed of doing the things she tells us about. 

Clinic tomorrow. Hopefully Ram will actually be there this time.


The 13th & 14th; Part of me is really sick of life.

The 13th of September.

It seems every day at the moment ends with me feeling terrible. I felt fairly normal this morning, but since about lunchtime, my heart rate’s been 113ish at rest (it’s normally about 83) and I’ve been extra breathless. I couldn’t even walk across the road to Becky’s for the party tonight.

I have spent most of the day in the armchair, rising to go to the kitchen to investigate interesting smells and see what else Becky had brought to put in our fridge. For the majority of the day, the house has smelled of pulled pork, plus there were cheesy dough balls and all sorts of other things going on.

I read a lot more of The Girl With All The Gifts too – nearly finished! I also ate a lot of sweets whilst doing so as I’ve just felt so crappy and eating all the things seemed an appropriate response.

And tonight was Becky and James’ engagement party! I pretty much stayed in one place for the whole time – in the kitchen. Outside was cold and the effort required to stand up for a long time was draining, so I sat at the kitchen table and talked to whoever passed through. It also meant I got first dibs on all the food. And there was so much food. Four lasagnes, falafel of different types, bread, turkey, chicken, salmon, mini pies, our pulled pork, plus so much more and then many salads etc. then all the puddings! I can’t even list them all.

I left after cake, because it was ten o’clock and I was wrecked.

The 14th of September.

We’ll tonight I don’t feel totally horrendous. Which is a plus. I had a relatively decent sleep after last night’s frivolities, not really waking up until nearly eight!

This morning was Sunday Brunch and finishing The Girl With All The Gifts. We had pheasant for lunch which Mommy brined before roasting and I think it definitely made it more moist than it would have been otherwise. This afternoon, I caught up with last night’s X Factor, spotting people we’d seen. I was also looking at loads of street food places and other restaurants that I want to go to in London but visiting them all would be nigh on impossible without a full-on itinerary for about a week plus a hotel and taxi fares because of the wheelchair. It just isn’t going to happen.

And we buried Oscar today. At the bottom of the garden, with Ceefer and Toffee. I was fine, then Daddy put the little box of ashes in the ground and suddenly we were all crying and Mommy was squeezing my shoulder very hard. Thankfully, almost as soon as we re-entered the house, Becky and James were at the door with flowers to thank us for helping yesterday so they then provided a very welcome distraction.

Part of me is really sick of life, and another part wants to punch that other part in the face because things could be so much worse.

photo 3

Processed with Moldiv

The 11th & 12th; Here is my exhausted, nauseous self.

The 11th of September.

Trembling again tonight, but not so much as yesterday so I did get some writing done today – mainly about GvHD, a little bit about photopheresis.

This morning Mommy washed my hair, and we rang the QE because my arms are still retaining fluid. I’m going to need the stent putting in. This afternoon I had my pelvic ultrasound! I had to have a full bladder, so by the time it got round to my scan (4.20pm), I was rather anxious to pee. I was scanned, then I was allowed to relieve myself, then I had to have a transvaginal scan which was unexpected but fine. She found no abnormalities, so that means no scrape, just the coil, hooray!

I started The Girl With All The Gifts and it appears to be about zombies which I had not realised. It’s good though. Definitely different to the Murakami.

I am worried that my Chris Riddell drawing has got lost in the post.

Last night, after I finished writing, I was feeling sick, and I was so tired and cold, I started getting really scared I was getting poorly and I was crying at Mommy, and I just felt terrible. I asked her to take a photo of me in the position I was in, how awful I was looking and feeling, so that I could put it on here because I feel like sometimes I just show you this brave front of me carrying on and all the positive things, whereas in reality there are times that are utterly shit and I don’t expose this side enough. So here is my exhausted, nauseous self.


The 12th of September.

Terrible night, awake and asleep, no decent chunk of time, horrible. First thing I did was get on the Apple store in all possible manners, but I was too slow, so my new phone will not arrive for 3-4 weeks, frustratingly. Have to cope with shitty battery life a bit longer.

Had my line flushed; that was all very straightforward. This afternoon I went to Fiona’s to squidge baby Phoebe. She decided to be awake and smiley and sleepy this time so we made lots of silly noises together and apparently I wore her out as she is fast asleep now.

Tonight I want to eat all the things and Hamilton wants to eat the carpet it seems. It’s very loud. I don’t think he can actually get at it through the slits in his ball though.

Christine come home tonight!


photo 2

Processed with Moldiv

The 9th & 10th; I’m having weird food feelings/relationship right now and I feel a bit sick and ugh.

The 9th of September.

Well I’m not sick, and last night I was really scared that was going to happen overnight so I was pleased to not wake up in pain.

This morning I bimbled and watched TV, and this afternoon was more photopheresis. I finished A Wild Sheep Chase – need to read something slightly less surreal now, I think. I bought loads of Murakami books though, so I’ll have to alternate them.

After leaving the QE, we went into town to look at boots and chunky cardigans but I think I’ll need to wait a bit longer before any decent stock comes in. None of the cardigans have buttons! It is most befuddling. And Mary has left Chanel! Well, she’s moved to the John Lewis one in Solihull so we’ll have to go visit her. Our replacement is called Elise and I bought Le Vernis in Vendetta from her. She also sprayed me with some Beige which is quite floral and I like it a lot.

Tonight has been all about the Apple launch. The battery on my 5 is dying and that is something that has supposedly improved. The live stream was a bit dodgy – they finally got rid of the translator I could hear after about twenty minutes. She was so irritating!

I need specs now. Got to make a decision.

 The 10th of September.

I am so trembly tonight and it’s incredibly frustrating. I’ve been like it all day and I wanted to do some writing but the trembling shook not only the pen but also my focus.

I spent my morning getting angry at O2 because they would not give me my PAC code so I could leave. After tweeting and live web chatting with very unhelpful people, I eventually spoke to someone reasonable on the phone who gave me the code and was sorry about all the harassment. Then Mommy took me into Sutton so I could get a SIM card from EE and I am switched to them and it’s all fine.

My afternoon has just been me being irked by my trembling and watching catch-up TV. Becky came over for some stress-offloading. She has many plates to spin at the moment.

I’d ordered a Marc by Marc Jacobs salted pretzel necklace which came today so that cheered me up.

I’m having weird food feelings/relationship right now and I feel a bit sick and ugh.

Processed with Moldiv photo 3 photo 5

The 7th & 8th; I would so very much like to be back to my version of normal.

The 7th of September.

Lorazepam day means that I haven’t been fully with it. I’m fairly sure nothing drastically important has happened, but I will re-read anything I wrote in my other notebook.

I know I can’t read books in this state, so Sunday Brunch was an excellent distraction this morning, and after Grandma came round for lunch, she and Daddy went to her old room to watch the Grand Prix, and now she’s back at Boldmere Court.

I can feel where my skin is going to split and it hurts. I would so very much like to be back to my version of normal.

The 8th of September.

Tonight I feel terrible – cold, tired and shaking even more than usual. I will be in bed by nine tonight.

Photopheresis went fine, nothing to really report. My time was a little bit longer than usual, and as Mommy needed to be at Grandma’s for two today, we were anxious to get going on time. In the end she was only about ten minutes late, and I spent the afternoon writing stuff and watching rubbish TV.

We cleaned out Hamilton’s cage, had dinner, and now I am honestly just waiting for it to be bedtime because I am done with today. I’m sorry this entry is so short and uninteresting but I’ve got nothing to say.

Processed with Moldiv

The 5th & 6th; My feet are requiring constant elevation to stay a reasonable size.

The 5th of September.

I had a fairly decent night, awake on and off from half four until half-seven, when I got up. I’ve had to keep reminding myself that it’s Friday, not Saturday for some reason. 

Katie the nurse came to flush my line this morning, and I haven’t seen her since the 1st of August so there was a fair bit to update her on! The line was fine, and Mommy and I changed our dressing. The scab has all come off and it’s basically healed now. So I shouldn’t need the dressing for much longer.

I needed to replenish my stock of sweets (I have a little big by my armchair that I occasionally dip into) and get some more bedding and sawdust for Hamilton, so Mommy took me up to Tesco, M&S and Pets at Home. A lady on the checkout in M&S asked who I’d been fighting with, and I could say “the floor!”

This afternoon I have been writing. I finished off a piece about anorexia, and I am part of the way through one about mobility (or lack thereof).

Tonight I feel weirdly fluttery! It’s like my heart is racing, but from taking my pulse, I know it isn’t. It’s not fun. 

The 6th of September.

Today has been alright. My body’s been a bit sleepy – my brain wants to move, but my body just can’t be arsed. It’s an odd sensation.

This morning, I read the paper, did some blogging and some other writing. I finished the piece on mobility. At least, for now. It all will need editing. I keep having ideas for other themes to explore. 

After lunch, Daddy and I went to see The Guest. If you’re looking for some gratuitous violence, a bit of dark humour and quite a lot of brooding Dan Stevens, you’ll find it there. It’s not a massively thought-provoking film, but it provides a good time. 

I had to use Daddy’s arm to help me get up the stairs in the cinema, and my arms are still a bit boggy. My feet are requiring constant elevation to stay a reasonable size. I’m not sure why – we need to discuss this with someone on Monday. Have photopheresis, see another doctor. 

Today I have been overloaded with Tom Kerridge – he was on Saturday Kitchen Best Bites, then Paul Hollywood’s Pies & Puds, then on Women’s Hour on the way home from the cinema. Having also gone through both of his books, I am now just beyond desperate to eat at The Hand and Flowers. I need to eat his food. 

Processed with Moldiv

photo 2

photo 3

photo 2

photo 3

The 3rd & 4th; Strangers (you know who you are) are great.

The 3rd of September.

I am so tired. This morning I was actually sleeping at half six when my alarm went off. I had to get up because I had haematology clinic and if you’re not early, you’re there for hours. It actually turned out to be a wasted trip though because Ram wasn’t there and everyone else is useless to me.

We went into town to take back some trousers that Daddy had rejected because they had no wool in them and get some replacements, then we came home for lunch and promptly went out again to the chiro. I haven’t had any twinges, and Trine just found a few niggles to work through, so my fall has obviously not been too traumatic.

This afternoon, I published some blog posts and watched some trashy TV. I also got a lovely present in the post! It was a basket of various goodies, such as triple chocolate cookies, Haribos, Neal’s Yard shampoo, Soap & Glory stuff, candles…it was just full of delights. Strangers (you know who you are) are great.

And yes, tonight I’m knackered and I’m going to bed immediately post-Bake Off.

The 4th of September.

I was hoping for another reasonable-ish sleep but that didn’t really happen. Never mind. I am down to 20mg of pred now, so things are moving on the right track, albeit slowly. I reckon I might be off them by the end of October if things go to plan?

My day has been really very boring – I have written stuff and watched TV, and this evening was supposed to be an Old Hallfieldian Society meeting but it was cancelled last minute, so it’s been rather a sleepy and mundane day. I have drunk a lot of coffee.

I’m trying to write again. We’ll see how that goes.

photo 1

photo 2

photo 3

photo 4

Processed with Moldiv


Get every new post delivered to your Inbox.

Join 2,481 other followers