Archives For pain

The 7th of August. 

Still some pain today, but not quite as much. I had a decent enough sleep, but I’m still tired too. Too much activity for me for one day; my body is taking its time to recover. I’ve got very little on this week, just respiratory clinic and we’re back down to London this Saturday to do it all again. I will, at least, not have a gig to go to, so I can just rest when we get home. 

I spent most of my day working on blog posts, typing up the 3rd to the 6th, then uploading all the photos and culling the shit ones. Got to decide if I take my camera again this week, or if I take a different lens. We’re sitting in a different place so I need to work out what we’ll be able to see. 

I think I finished about half two, then I made two more squares of blanket while watching some more Glow. I’ll have to lay them out to work out how many I’m going to have to do. 

Tomorrow, I think I’ll stop the pregablin. A week of the double dose has done nothing but make me sleepy, burpy and hungry. The hunger is fucking me up because part of anorexia recovery is learning to feed yourself when you’re hungry, but now I’m having to ignore the hunger, tell myself it’s just the drug, and it’s so confusing. 

The 8th of August. 

Back to pretty much normal levels of pain today. I’ve binned off the pregablin because it has done fuck all for two weeks. I’ll be going back to see Dr. Blaney and we’ll discuss steroid injections. Stupid spine. 

Today has just been crocheting squares for the blanket. I did two or three this morning, in between visits to the kitchen to check on baking progress, because we made chocolate, ginger and sesame cookies and chocolate cupcakes with coffee frosting filling. 

After lunch, had a quick hairwash (very little colour is left in my hair now), then Mommy went to Grandma’s and I got back to crocheting. I’ve now got sixteen squares and I watched all the daytime crime dramas Sky Living has to offer. I think I’ll do four more and see how it looks. I don’t want the baby to grow out of it straight away!

The 5th of August.

Oh god such a long day. I am in so much pain. I got up at ten to five because we had to be at New Street for twenty to seven, and that is too early for a Saturday. When we got there, we bought coffee and breakfast pastries, then sat in the assistance office until it was train time.

Arriving at Euston, we did not have time to wait for even five minutes for the ramp, so we just sorted ourselves out. Bought lunch from Pret, and a coffee to put in the thermos for later (Olympic Park coffee is vile). Then we bombed down the road to St. Pancras and got on the javelin to Stratford. I got the last seat, by sheer dumb luck. Thankful, because I can’t stand for six minutes. Upon arrival, we had to join the queue of wheelchairs for the lift, then had to navigate Westfield, trying to find a way to get to the corner of John Lewis where we were meeting Christine. The first lift was broken, and marshals didn’t know where we should go, so we ended up going all the way to the other end of the mall to find a working lift, then doubled back so we could finally get on the correct route and meet Christine. Found her, then joined the crowds heading for the Olympic Stadium. Got settled in our seats, in the disabled position just above the start line, so we had a great view of that, plus some of the heptathlon events that were going on.

For most of the morning, my eyes were killing me, and there was a freezing cold wind which I couldn’t seem to find respite from from, despite even putting up an umbrella to use as a windbreak, so I couldn’t enjoy myself as fully as I might have. I saw a lot through my camera lens, between drowning my eyes in drops and screwing them up tight. At one point, I wanted to drink the coffee we’d brought in, so I poured some out only to find it tasted really weird. I drank a bit more, then remembered that the woman behind us at Pret had ordered a soy milk cappuccino. We must have got that. No wonder it tasted so disgusting.

We saw lots of events – no finals, just heats, but it’s always fun to shout at people to run faster, and groan with everybody in the crowd when someone knocks the high jump bar down. It was so sad when KJT hit the bar on her final attempt, and we all watched her curl up in a ball on the mat, poor thing. We all felt it.

The weather made things interesting; we had several showers, and as we left, some huge rumbles of thunder. I’d been covered in the giant wheelchair poncho, so didn’t get wet when the rain came. We weren’t herded the way we were after the Anniversary Games, so we got back to Stratford much quicker than we expected. Started talking to a couple on the platform who also had a wheelchair, to find that their son is having a stem cell transplant this week! Tried to share the successes of my life to give them hope. No liver failure chat for first-timers.

We arrived at St. Pancras just after two, so had just over an hour before we needed to be at Euston. I suggested we go to Origin to have an actual nice coffee, so that took up a good half an hour, then we scooted down the rest of the round.

We picked up some reading material for the train, plus some Pom Bears, then off to the assistance office again! We’d barely sat down before we were sent to the platform, despite our train not departing for nearly thirty five minutes. We were told the chap would meet us with the ramp, so we waited out in the freezing wind for him to appear. After ten minutes, there was no one, so I rang to check the situation, and she said he was coming. We waited another ten minutes, and still nothing, so we hauled the chair on to the train, only to find the wheelchair position floor was covered in food and some other crap. I didn’t really feel like covering my wheels in that, so we folded up the chair and I sat next to Mommy. This turned out to be a smart move, because a couple got on the train with an old Westie who sat under the chair in front of me so I had a dog friend for the journey home! Then we picked up some pizzas for dinner and have about an hour in the house before I have to go out again for Regina Spektor tonight. Busy busy busy.

The 6th of August.

So. Tired. So. Much. Pain.

Regina Spektor was beautiful last night. She was, frustratingly, half an hour late on, but was so charming and brilliant, I forgave her. I never thought I’d hear Us live and it was so gorgeous. She is one of few singers who are just as good as their record if not better in person. And I was spotted by Hayley from school so we caught up afterwards which was delightful.

I am very tired now though. I got to bed after midnight, and slept until ten. I’ll still be having an early night tonight I think. Plus my back hurts all over, and my neck, and my bum. Having zero fat on there means sitting on non-padded seats all day leaves me in much, much pain.

This morning, once I was actually up, I wrote about yesterday, which was a long one. I’ll have lots of blog work to do tomorrow – got to get the photos off my camera before I do a post as well.

After lunch, I crocheted. Just crocheted squares for Michaela’s baby blanket and watched the new Orphan Black, which made me do a small cry.

We wear our scarves just like a noose
But not ’cause we want eternal sleep
And though our parts are slightly used
New ones are slave labour you can keep

We’re living in a den of thieves
Rummaging for answers in the pages
We’re living in a den of thieves
And it’s contagious

The 1st of August. 

I am very tired because I woke up at ten past six for no reason, and couldn’t go back to sleep. I’ve had three coffees, but the caffeine has worn off and now I am weary again. 

I didn’t get up upon waking; I stayed in bed, listening to the radio for a while. When I did get out of bed, I did a blog post, and I phoned around for an appointment with somebody about my arm. I’m going to see a surgeon who does various procedures for lymphoedema, and she’s obviously very busy because the earliest I could see her is mid-September! Still, it’s before the clinic, and I need this fixing. 

I was at Black Sheep at 11.45 to get my hair cut. I saw June, as Michaela’s off until October, and now my back and sides are super short, with the top long. The last time the clippers were used so much on my hair was when we shaved it pre-chemo on my kitchen floor. Ah, memories!

After lunch, I went into town with Mommy who was giving blood. While she did that, I went shopping – I bought a skirt from Oasis, some wool from John Lewis, and I had a brow consultation at Benefit. I really had no idea what to do or use, and now I do! Then I got a text from Mommy who was finished, and we came home to find the towels that had been drying were wet again. British summer. 

The 2nd of August. 

I was woken up today by Daddy phoning me to find out where Mommy was. I didn’t know, because I had been asleep (she was here, just not near her phone), but I was glad he’d woken me because I’d been having a horrible dream in which Christine had got drunk and had sex in my bed, then she’d drawn all over my bedroom walls and I was trying to erase it, but everyone thought I was overreacting and her behaviour was fine which was really frustrating! Stupid brain. 

My day has been spent crocheting and assembling the panda. I finished off the body this morning, then we had lunch and watched last night’s Criminal Minds: Beyond Borders. Then this afternoon, I made the arms, ears, tail and scarf, then I put him all together! He is very cute but might look a bit terrifying to a new baby. I hope not. 

I have been needing lots of Rennies recently because my tummy is full of wind and I suddenly realised it might be to do with pregablin. Looked at the side effects and yep. Also it’s why I’m so much hungrier. Still not helping the pain. 

Had a lady come and see Bree with her daughter and grandson. They fell in love, and the little boy started crying when he realised they couldn’t take her home today! Bless.

The 26th of July. 

Industrious day. 

I had a rather confusing start to the day, because first my brain thought it was Sunday, then that it was half past ten, neither of which were true. After registering what day and time it actually was, I got up and dressed for a day which appeared like it was going to be chilly, when actually this afternoon it’s got quite warm. I don’t know what’s going on, frankly. 

I did a blog post, then got the minion out, which I’ve been working on most of the day. I have now finished the dungarees and all the embroidery on them. Now I have several small details to make – limbs, eye, etcetera. I have nothing to do but work on him so I don’t think it’ll take long before he is finished. Then panda, thing for Michaela’s daughter, things for Pete and Sophie’s twins. Going to be a busy woman. 

The 27th of July. 

I can tell I’ve been busy because my phone battery is still up at 80% and I haven’t had it on charge at all. So much crochet. 

That is literally all I have done today. Sat down in the living room this morning, got the wool out and haven’t really moved since. I have actually finished all of the pieces of the minion – today I made all the fingers, thumbs, arms, feet, legs, eye, lens and strap. Next job is to attach them all to the body, then he will be whole! I’m not sure I will make another one – the fingers were quite tricky, especially because they were in black and that is really hard to see the loops in. Next thing I have to make is the panda – more black, hooray!

I have tried the pregablin again and today it has not made me too sleepy or breathless. Hopefully tomorrow is the same. It’s not worked on the pain at all, but if I can cope with the drug, then I can up the dose and see if it works. 

The 24th of July.

Feel much better today. Bloody rosé. I will stick with the Pinot Grigio from now on. 

It’s been a very quiet day. It will be rather a quiet week, as it stands, because my diary has nothing in it at all. 

I woke up from a dream in which I was Cerys Matthews from Catatonia and I was rehearsing with Tom Jones. As you do. I spent the morning writing up the weekend, and registering the adopted kittens’ microchips now I finally know what they’re all going to be called. 

After lunch, had a hairwash (would’ve done it yesterday but other things got in the way) and realised I need a trim. Michaela’s baby has just arrived, so she won’t be able to do it, so I’ll have to see if Danyl can fit me in. Sides and front getting a bit long. Then I went to see the kitties, although they were really only interested in sleeping this afternoon, so I watched some more Orphan Black instead. I suspect over the coming week, I’ll get up to date. 

I spoke to the lymphoedema clinic who have not had my referral. I then spoke up Philippa, and it turns out James hasn’t sent it yet, so she’s going to badger him for me. Sigh. 

The 25th of July. 

Well I’m fully up to date with Orphan Black, so I’ll have to find a new way to fill my time. Perhaps I will actually read some of the books I have been recently buying. 

This morning, I got busy on the crochet, and by lunchtime I had made the dungarees of the minion. Well, most of them – they need a back. Still, it is progressing. I had to make my own lunch and even just making a sandwich, I was reminded how awful my back is. It is agony to stand, to support my own weight. I need to give the pregablin another go before I can say to the doctors that it doesn’t work/the side effects are intolerable. 

This afternoon, I sat with the floofs and watched Orphan Black. Bree was chasing flies again, so I didn’t get to do much petting. Still no interest in either of them and I can’t understand why! Both so lovely, who doesn’t want a pretty cat?

The 20th of July.

Second trip to London this week! So much wheelchair – my bum is not going to thank me. Left much earlier today, as the train was at half ten, so we could have lunch in Covent Garden before the show. We went to Timberyard because it’s my favourite, despite them not doing crodoughs anymore. I had a ham and cheese croissant, a chocolate chip brownie pie and a flat white, after which I was very full and had to undo the top button of my jeans.

We had to pick up the tickets from the Donmar at two, then we waited for Christine to arrive inside the foyer. The rest of the audience seemed to be elderly people, but then again, what can one expect for a Thursday matinee? Anyway, once she appeared, we went to find our seats and settled in for Committee (or The Public Administration and Constitutional Affairs Committee takes oral evidence on Whitehall’s relationship with Kids Company). We went because Naomi was involved in the development, and we were intrigued to see how it had turned out. It was a musical developed from the transcripts of the session in which Camila Batmanghelidjh and Alan Yentob were interviewed, plus testimonies submitted for evidence. Considering the material, it is interesting and entertaining. The set is very smart, and the performances of the singers are really remarkable. I’m not sure I entirely grasped the point, but I enjoyed it.

After the show, we went for a drink, then dinner at Hawksmoor. I didn’t really have much room in my belly, so I decided to go for some lemon chicken with Béarnaise sauce and buttered greens, while Mommy and Christine had steak/a burger, then panna cotta. I just wanted a lie down.

We paid the bill, then we had about an hour before we had to be at Euston, so we decided to walk/drive back. The weather was nice, so why not?

The 21st of July. 

Everything hurts. My butt hurts, my legs hurt, my back hurts, my neck hurts. Sitting in the wheelchair for two out of three days is very bad for my body. 

I gave myself a lie-in this morning because I was awake until two, burping. I don’t know why – another mystery of my fucked digestive system. So there wasn’t a huge amount of morning left after breakfast and coffee, and I spent what remained watching BBC Newsroom and writing about yesterday. Tomorrow I will write two very long blog posts. 

After lunch, I started crocheting the minion I am making for Herbie, while I watched Orphan Black. Three episodes done and most of his yellow body. I have much crocheting to do, so I will have to have some industrious days. 

The 18th of July.

London in the summer is my favourite. I was down today for the summer reception of the APPG for stem cell transplants at the Houses of Parliament.

I got to New Street about lunchtime, bought myself some food and coffee, and went to sit in the assistance office. They got me on the train nice and swiftly, and I settled down listening to some empowering tunes to get me pumped for talking to MPs. At Euston, of course, they were late to pick me up. They might have been just within the 5 minutes but I was bored and had to pee so got the chair off myself. Had an awkward moment at the disabled toilet where the man with the key tried to stop a woman and her daughter going in only to be told that the daughter was blind. Ergh.

I went to get another coffee, and although it was early, I thought I might as well just get my cab to Westminster, just in case there were delays because of security or whatever. I had a very perky taxi driver, who I educated about stem cells, and he ended up dropping me off quite a way up Whitehall, because otherwise we would have sat in very slow traffic while the meter ran up. So I beetled down the road in my chair, trying to avoid people and not get blinded by the bright sun. When I arrived at the visitor entrance, there were only a couple of people ahead of me, and they just x-rayed my bag and patted me down. No weapons here. I carried on through to the main entrance hall, and it was only quarter past three. The reception didn’t start until 4. Oh well. I texted Cassie from Anthony Nolan to let her know I was there, and proceeded to twiddle my thumbs. I didn’t have to do it for long, as I soon saw Henny and Richard from AN arrive, so then I had people to talk to, and they found someone who could take me to the terrace pavilion an accessible way.

When I got there, I saw Cassie and Simon, and met some other members of the team who I’ve heard of or talked to but not met in person before. They were still setting up, so I just watched and talked people as they arrived. As it got to 4, people began to trickle in, and before we knew it, it was really rather busy. I actually didn’t end up speaking to any MPs, except Mark Tami, the chair of the group, as it happened. I talked to several people from Anthony Nolan, and other patients or supporters. Emma, one of the other young ambassadors, was there, so we talked about what’s been going on with both of us and had our photos taken, then I spoke to a girl with an interesting connection to me and obviously an incredible memory – she met me when I was in YPU with Alice and Vicky back in 2010/11 (I think that’s when it must have been), as she was a friend of Alice’s. She was there today with another of her friends who’d had ALL, so we had a good conversation about relapses and getting leukaemia tumours. Then the last people I really talked to were a girl called Amy and her friend – Amy set up the change.org petition to reverse the decision to not fund second transplants when her friend Sasha had to fundraise to pay for hers. Only after she started paying did the decision change.

Before I knew it, it was 6 o’clock and time for us to go. Cassie found a man to take me back out, and once I’d escaped the labyrinth, it was time to find a cab. Last year, nobody was willing to come to Whitehall, so I decided to drive up the road for a bit until I could find somewhere suitable to get picked up. I ended up getting all the way to Shaftesbury Avenue, and eventually stopped at The Palace theatre. I was bound to get a taxi round there, so I used the mytaxi app and a chap came to pick me up. It didn’t take us long to get to Euston, so when I arrived, I had about an hour before I had to go to assistance. I bought a sandwich and a drink from M&S, a couple of magazines for the train, then in WHSmith’s they were doing buy one get one half price on some books. There were two that I wanted anyway. I am awful.

The 19th of July. 

Tired. Took me hours to fall asleep, and I’m a bit floopy today. Got up at half nine, and most of my morning was spent writing about yesterday. It will be a long entry – always is when I go on a trip, so probably another tomorrow. 

This afternoon, we caught up on The Handmaid’s Tale from Sunday, then two episodes of Criminal Minds: Beyond Borders. Then I went through to the kitties, as I didn’t really see them at all yesterday. I watched two episodes of Orphan Black, and they slept on opposing windowsills. I got Bree to purr again! She likes what Betty likes – having her chin scratched. I will make her friendly. Or at least not terrified of people. Christine is coming back with us tomorrow, so she’ll meet her and that will be a good test. Hopefully she doesn’t run away.