Archives For January 2014

The 13th of January.

It’s been a bit of a weird day. I woke up at half six which I’ve just become accustomed to now. I just listen to the Today programme until a socially acceptable getting up time (usually I just wait to hear Mommy leave the bathroom).

We washed my hair, then I had an appointment at the Dental Hospital for a clinic at 11:30, but we were early which was fortuitous as we bumped into Carol! We haven’t seen her for ages, so that was a delightful surprise. She’d just had some wisdom teeth out so was a bit dribbly but able to chat, so we caught up on life before her lift came. She wanted to know if we’d made a paella in the pan she sent us yet, and we hadn’t, so that was dinner. It was scrummy.

Mrs. Richards was very sorry to hear I’m back on steroids but is confident that we can take care of the dosage ourselves. She, the junior doctor and the nurse were all massively impressed with my oral hygiene. It’s ’cause I floss. Then we went to BCH to see little William who’s having issues with his bowel (we first met in Ward 8 at BCH when I was having my liver transplant and he was having a small bowel transplant), except he was in theatre so we talked to his mum Sarah, in the parents’ room. I haven’t been to Ward 8 since January 2009, and being in that same place, although they’ve done building work, was very strange. I hated that ward – it is where I was at my weakest; unable to even lift my own head. It is where I was at my worst, my most humiliated and depressed, and I have no good memories of it.

Wills came back, we said hello before going, as he was still very groggy from the anaesthetic. This afternoon, I watched Let Me In, and started reading The Luminaries by Eleanor Catton. I think I need to read it in substantial chunks. Tonight is Sport Relief Bake Off!

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The 14th of January.

I feel dreadful. I’m exhausted; I keep waking up early and I’m just running out of energy.

This morning, Mommy and I were at the chiro, so both of us are feeling super-aligned. My back started hurting last so night so having an appointment today was very convenient.

After being home for about 45 minutes, Mommy took me to Yorks where I was having lunch with Sam. I had hash and eggs and a white chocolate chip brownie, both of which were delicious. I also filled up a loyalty card so I got a free coffee! We both had a lot to update each other with, and he had brought me some beautiful flowers! They’re in a vase in the fireplace now. At one point, Joe Lycett (@joelycett) walked in and I had to exercise a lot of self-control to not go and scream in his face, as I’m somewhat of a fan. I don’t think he would have appreciated that.

Mommy managed to finally get the family charm from Pandora, but unfortunately, it won’t fit on my current bracelets so I’ll have to get another one.

Since we got home, I’ve just been so droopy. Becky came over for a bit, and I ate a vast amount of gummy bears.

Daddy bought a new tv at the weekend and went to collect it from Currys this evening after work. However, he got it out of the box and the screen is smashed! So that’s good, thanks Currys.

I am going to bed after the Bake Off. My body is a git to me sometimes.

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The 11th of January.

Wow, tonight’s tv has really left me wondering just who is commissioning shows now, or who they think their audience is. Especially on BBC1. Some programme called Reflex, which is essentially Total Wipeout but with families and in Britain, then we started watching The Voice but it became so sycophantic, we’ve ended up watching Splash! and it seems positively highbrow in comparison.

A man from ASOS arrived at about 9am, but thankfully I was dressed as I had to answer the door because Mommy was at Tesco and Daddy was still in bed. I spent my morning reading my first magazines from Stack and the paper. First was Victory, a sports photography publication made in New York, which I unexpectedly really liked, and second was Jashanmal Quarterly, which consisted of interviews with editors about magazines. I didn’t love that one so much.

This afternoon I had a tidy of my room as its state had become annoying to me. I also finished Hadley Freeman’s book, confirming to myself that I am awesome. What next?


The 12th of January.

I’m so tired tonight, but I couldn’t tell you why. I suppose my sleep quality wasn’t brilliant – I woke up and got my head all buzzy with thoughts, but I did drift off again. I woke again at eight, and decided to get up. By the time I’d got downstairs, Mommy and Daddy had left to take Grandma to church. I meandered about, making breakfast while I watched Sunday Brunch.

Then Mommy and I watched last night’s episodes of The Bridge, then I spent the entire afternoon reading Birdman by Mo Hayder. I devoured it, and now it’s done. So I’ll have to get the next one in the Jack Caffery series.

I just feel listless. I don’t know what to do with myself, and I just want to eat. That is boredom and tiredness.

The 9th of January.

Today has felt very busy, but I’ve been sat down for most of it. We went to the QE for 10am today for my first photopheresis session with my veins. It didn’t start off brilliantly, with me being stabbed and not bleeding, but then not stopping bleeding when the needle came out. Then they thought they’d have a go with the PICC line, which we were not optimistic about, and were correct – it’s just too small. Then we had to wait for my right arm to stop bleeding before we could try going back in. So eventually I got going at 11:40. Then I pootled along quite nicely and was finished just after two o’clock, which was a lot quicker than we expected.

We waited for a little while afterwards, to make sure I didn’t leak, then we left and got home just before three. I had coffee and changed my jumper, then we went to Grandma’s. Took more flowers (she has a small garden in there now) and some cards, then we went to Miller & Carter and waited for Daddy.

Sophie from the deli was there! She sort of squealed my name and ran over, so we had a brief hug and chat, then we went to sit down. Daddy wasn’t too later, but he’d told us his order so our food came and we chowed down. I was so hungry, I didn’t even take a photo! I had an 8oz sirloin steak medium rare with chips, béarnaise sauce and lettuce with blue cheese and Stilton dressing. Then I had chocolate brownie and ice cream which I couldn’t finish. Yes, I am now utterly stuffed.

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The 10th of January.

Woke up at six but feeling okay. Got on the scales and I’ve put on another three pounds, which I can just about tolerate but that’s pretty much my limit. I’m now in a strange place where I try to get back to my “normal” eating without consciously restricting my intake. Lack of exercise makes me feel lazy but breathing is unpredictable at the moment.

Anyway. I had photopheresis again today, and we got going much quicker than yesterday. Got into the vein on the first try, and then I just sat there for two and a half hours while my blood got treated.

We left just after one, after Jo changed my PICC line dressing and we got some supplies. We went to Charlotte Caldwell’s house, mother of Emma who I was treated with at BCH and Sophie who is a gorgeous squidgy baby, to deliver a blanket from Project Linus for Emma. Charlotte tried not to cry and I played with squidgy Sophie. She was quite enamoured with my boots and handbag, so that got covered up before she attempted to eat it.

We drove home, I had a coffee, blogged and read Hadley Freeman’s book. I now have Jamie Oliver on and God, he’s irritating.

As some of you know, I’ve had an eating disorder in some form or another for almost ten years now. I was formally diagnosed as anorexic in 2009, after I had a minor breakdown when being asked repeatedly to gain weight post-liver transplant discharge. After several years of outpatient appointments at The Barberry, which is the QE’s eating disorders/mental health/mother and baby (it covers an odd spectrum of things) unit, with a doctor, a dietitian and a nutritionist/therapist (the therapy lasted the longest), I was finally discharged last year.

I don’t talk about it a huge amount, because it is not such a threatening issue for me any more, but I am having rumblings and if I write about it, I need to explain why. I only really started recovery after being in treatment for several months, possibly even a year, when I just decided that I didn’t want to be sick anymore. It really was almost an overnight decision. I was in hospital with the flu, and I had been weighing myself every day until then but in hospital it seemed pointless as it wasn’t consistent. When I was better from the flu, I went home and actually started to actively try and get better. I started eating three meals a day and telling my dietitian and nutritionist the truth about what I was eating and doing, and started gaining weight and feeling okay about it.

Anyway. I have been constant at around eight stone for over a year now (I have purposely not mentioned my lowest weight or put up any pictures because I know how anorexics who might come across this think) and while I was poorly in September/October, I lost about ten pounds, and have been struggling to regain it since. Over Christmas, I have managed it and more, and now I am in a very weird mental place of trying not to gain any more weight, without consciously restricting my intake and denying myself things, because as soon as that starts happening, the whole anorexic mental processes will begin again.

So I may start mentioning food or weight worries, and this is why. I’m trying to lose a couple of Christmas pounds without losing my mind. And it’s not going to be easy.

The 7th of January.

It took me an hour and a half to get to sleep last night because I just couldn’t stop burping. Things have been better today, I think from a combination of eating less (I’ve been consciously not picking at bags of sweets) and having Deflatine earlier in the day.

After I finally got to sleep, I had some of decent quality but not as good as the previous night. This morning we watched the Grillo sisters’ interview, then we went into town. Started at M&S to find a handbag for Grandma, failed, went to Boots to try and print a photo, failed, went to Pandora to try for the family charm, failed, went to BHS (shudder) where we successfully got a bag for Grandma, then we went to Waterstones to get a book rest, had success there, then had more failure at Pandora, and came home.

This afternoon I blogged and read Doctor Sleep. The DWP have sent me a questionnaire about particular benefits, none of which I’m on so am confused as to why I’ve received it.

This evening, I had a white hot chocolate in my Dress Up Boo mug, and Becky came round for tea and chat.

Tonight is The Taste, then bed. I think I can stay awake until then.

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The 8th of January.

Better sleep last night; no burping.

This morning I had several jobs to do; I rang the DWP to find out why I’d been sent this questionnaire, and it turns out I do have to fill it in as it’s time for me to be reassessed – yeah well now I’m terminal, how’s that? I emailed Close Brothers about my asset management, and let ASOS know that I’d had confirmation of return of all the rejected Christmas dresses because they were late. I filled in a form for Nationwide, and I bought anniversary cards for my parents from me and Grandma, and painted my nails with the purple YSL polish I was given by the Elle girls.

This afternoon, I frosted some cupcakes and then went with Mommy to Grandma’s to help her carry them and the birthday cake for tomorrow. We went into M&S on the way back to buy an orchid and some foodstuffs. I walked around as I have not been very active of late.

I wanted to start Hadley Freeman’s book today (I finished Doctor Sleep yesterday and it’s super super good) but my brain wouldn’t focus on it. I’ll have plenty of time for it tomorrow though at photopheresis.

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The 5th of January.

Oh my fucking god. I have been awake since half past two this morning and since I am incapable of napping when not poorly, I have had nine espressos over four lattes and yet have still been dreaming of bed since four. I did puzzles and listened to podcasts and did iPadmin to while away the hours until I got out of bed at eight.

I had kippers for breakfast which made me feel mildly better, and Oscar gave me death stares but I really did not care. I then pretty much spent my day in the armchair in the living room performing various tasks. I wrote three blog posts, tried and failed to find an easy way to organise/bulk delete photos on iPads/iPhones, and watched An Education. I’ve seen it before but it’s still excellent. I have also done the mass deletion of photos from my phone which felt like a massive wrench, completely illogically as I put them all into Ada. Stupid brain.

So I am recording Sherlock and going to bed at half past eight because that feels like a socially acceptable bedtime. I have no spoons.

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The 6th of January.

Well I had sleep so I feel better today. I need another good night though if I want to stay awake without silly amounts of caffeine in my system.

I got up just after eight, and had breakfast and coffee while I watched last night’s Sherlock. It might not have been to everyone’s taste, but I enjoyed it. Mommy washed my hair, then as I dried it and got dressed and things, I listened to an interesting programme on Radio 4 called Hack My Hearing. Then I came downstairs and watched This Morning (obviously we are back to normal life again).

When that was over, we watched The Bridge and that’s all very intriguing with lots of questions to be answered already. I love Saga. Then Mommy went to see Grandma and I wrote my thank you cards.

Tonight I’ve been incredibly burpy which is incredibly boring/worrying and I’ve been reading Doctor Sleep.

Stupid wind.

The 3rd of January.

Today has been really rather dull and unexciting but also productive and confusing.

My body clearly hates me for having lorazepam and it woke me up at quarter to five so I spent that time thinking about how I dislike having a smashed iPad with little space on it for anything more and my phone is full of photos so I came to the conclusion that I was going to get an iPad mini but with a higher capacity than my iPad 2. I have been thinking about this for some time; it’s not a total impulse purchase.

So I got up and dressed, then we had to wait for Anne-Marie to come and flush my line, then we went to town when she left. First, we went to Boots where I bought eye make up removal wipes as they were on offer and I get double points all month ’cause it’ll be my birthday on the 21st! Then to Apple, bought my iPad mini (named Ada) and a case for her, then Nationwide to pay a cheque in. After Nationwide, we went to Paperchase to buy some cards and Mommy had some wheelchair wrath at Selfridges people. The Paperchase area is really terribly set out for wheelchair users and pushchairs! Ugh.

Since we got home, I ate lunch, opened my box of books that have come from Waterstones, and done ever-so-dull iPadmin. It is twenty to eleven now and I have heartburn so I am stopping.

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The 4th of January.

Oh so I’m back to not really sleeping. Or sleeping for a bit and waking up early anyway. Five o’clock this morning, ugh. I listened to some podcasts to pass the time.

I got up at half past seven because I was sick of being in bed, and I was up even before Mommy which is unusual. Oscar was very surprised to see me when I opened the dining room door to find him on the table. This morning I did lots of Ada-min (I’m going to run out of puns on this subject quite quickly) – it’s all the organising of photos and apps. Syncing takes so long but it’s necessary. While I waited for it to do that, I read the paper.

Seriously, this shit takes up so much time. I haven’t had chance to start any of my books yet! Oh and the seventh one is on the way!

This afternoon, Daddy and I went to see The Hobbit: the Desolation of Smaug. It was much better than the first, although it may have been helped by the fact that we were in Gold Class because of a palaver with the Vue website. But the extra cost was fine because of my disabled person cinema card so Daddy went free! So yes, enjoyed the film, last third is better than the first two, but fun! Evangeline Lilly is basically faux-Arwen.

Then tonight’s tv has been utterly dire so Mommy and I re-watched the last episode of The Bridge before the new series starts. Now it’s compilation Graham Norton then bed because I’m sleepy.

I think my resolution should be to blog more regularly so I don’t do bulk posts like today where I’ve written three.

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