Archives For pain

The 1st of December.

Food show day! So I got home last night about eleven, didn’t get to sleep for ages, and was up early at seven. Bleah. I’m having Zopiclone tonight.

We were at Grandma’s for 9 and it was freezing. I had to put a blanket over my legs for the car journey. When we arrived, I went straight to Starbucks for a peppermint mocha, then I got a programme and worked out where I wanted to go. Mainly cake-based stalls.

I bought three brownies – one from Gower Cottage, two from The Brownie Bar (triple chocolate and Nutella), a slice of chocolate rainbow cake from a coffee stand, a box of drinking fudge and a slice of salted caramel fudge from Fudge Kitchen, and some filter papers for my advent calendar. Then I was done! So I had to kill time until Mommy and Grandma were done, which I did by watching cooking demos and reading a book on my phone. I caught up with them for lunch (wild boar burger), then we came home.

I got to finally open my advent calendars! First coffee in my Christmas mug and biscuit. Super tasty. Then this afternoon has been lots of planning, and Ann and Tom came to visit the kittens again.

So tired. 

The 2nd of December.

Today has been exasperating and tedious. I had planned to spend my day doing loads of crochet, but very little has happened at all.

It was all because my phone kept crashing whenever I tried to use it, which was obviously infuriating. After trying the basic resetting, to no avail, I thought I was going to have to spend the day at the computer trying to back it up. So I put my diary (so I could type up a blog post), some crochet and some other bits and pieces in a bag and took it upstairs for the slog.

After having it plugged in for over an hour and the progress bar not moving while I typed, I gave up on that. I managed to somehow score a Genius Bar appointment at half three, so I then sat on my bedroom floor and plugged it into the wall while I tried to back it up over the WiFi. It actually got to about halfway, and part of me wanted sack off the Apple Store but thought I ought to go and get it checked out. If they told me to go away, back it up and come back that was fine, I just wanted to know how to resolve the issue.

Town was horrific, as expected on a Saturday afternoon, and I hated everyone, meandering aimlessly in my way. Still, got to the Apple Store, waited for twenty minutes, to find that many people have had this problem today! It’s Apple’s fault – they did something that made lots of phones crash and the way to fix it was a software update. Because I hadn’t had a notification, I didn’t check for an update. Boy, did I feel like a willy. So the chap who was looking after me sat there and we waited for the update to happen while talking about security. Riveting.

Now I am home, all is sorted, and my back kills.

The 27th of November.

Another rather festive day for me!

Got up a little earlier than usual because Mommy and I were going into town so she could give blood and we could do a little bit of Christmas shopping. Her appointment wasn’t until quarter past eleven, but we went in early to return some Zara dresses and the queue in there can be very slow. We escaped with a bit of time to spare, and my plan was to go to the Hotel Chocolat café to have a salted caramel and clementine hot chocolate while I waited, so she came too for a few minutes.

While I drank, I perused the Pandora catalogue for the right charms for my two December anniversaries. I eventually settled upon the two owls for the 19th and the reindeer at night for the 21st. When she came back, we went to buy them, then to Irregular Choice. They have some shoes that I want for Christmas but I’m not sure what size I am, so I wanted to try some on. The girl working there was very helpful, and she found similar shoes in what we thought were the right size for me to try. They were good, so I have an email alert set up and they’ll call me if they get any stock in. Next was Selfridges for me to get something for Daddy, and to check if Huda have changed their drawers. They haven’t, but I spoke to the woman in charge and she was hoping a delivery downstairs was new drawers! But if it wasn’t, they’re aware of the issue and are trying to fix it. Our last stop was John Lewis because I wanted to check if their haberdashery had any chain for a necklace but no luck.

Then home! I had some cheese on toast as the weather demanded it while we sped through the X Factor (hooray for Kevin! Although we don’t want him to win as that rarely ends well). After that, more crochet, although that was limited by my left eye being excruciating for most of the day.

The 28th of November.

I have a feeling that many entries from now until Christmas will involve me sitting and crocheting. I have so much to do! Making at least four different things and some are quite intricate so I have much more work ahead of me.

Today has been rather productive on several counts – I got a blog post done, spoke to both the secretaries I needed to, and had a fairly long conversation with Emma from Anthony Nolan about a cool thing that I am planning but can’t talk about just yet.

This afternoon I have been crocheting – mainly working on a present for Grandma but switching to the one for Mommy when she went out. I was also composing an email about this Anthony Nolan thing and working on some other stuff to go alongside it.

My eye has been much less problematic today, thankfully. I think not having any make up on has helped. Got to wear as little as possible.

The 21st of November.

Well I had a great start to my day, securing tickets for Sadie and I to go and see My Dad Wrote A Porno Live! Super excited for that, and we have great seats too.

I was at the chiro at 10:45, and that was surprisingly painful. The angry tendon that runs up the whole right side of my spine was very unhappy as soon as Trine touched it. Still, I am seeing Dr. Blaney tomorrow. Pray for steroid injections.

This afternoon, I planned to do a bit of looking at Christmas present ideas, but I got started on some crochet and just haven’t put it down. I’ve also been waiting for the pharmacist at Boots to ring, but they haven’t. They were supposed to be calling because my spare compression garments have arrived after waiting for two weeks, only to find the person on duty ordered the wrong thing. They have the code of the product but are apparently incompetent at using the information provided. Bad enough when the GP prescribes the wrong thing but when they have all the information and still fuck up…I don’t know. Gah.

The 22nd of November.

A slightly less productive day at hospital than I had hoped for, but that was more due to a misunderstanding on my part rather than anything that happened there. It emerged that the appointment with the anaesthetic team that had appeared on myhealth was not with the pain team, it was the one I had as part of the pre-assessment clinic. And having checked again, I don’t actually have another appointment booked in with Dr. Blaney, so we’ll be ringing his secretary tomorrow.

This did mean my visit was rather more straightforward. First I saw one nurse who did my height, weight and blood pressure. Then a sister called Kat, and we had to talk through my whole history, all my medications, what I’m allergic to, what I’m having done, and she gave me the pre-surgery checklist of things I have to do or not do in the hours preceding the procedure. I then went for bloods, but my veins didn’t want to cooperate, so I went to see the anaesthetist and drink a lot of water to pump up my veins. Had a very long conversation with him, mainly about my lung function, the pneumothorax and the pneumonia. He mentioned that my lung function is only 23% of what it ought to be, which was a surprise. I knew it was bad, but not that bad. Wow. Anyway, my lung function is not important because I’m having a regional block, which is like an epidural but it’s just one injection. I had to try to explain why I need to be examined in this situation but I’m not sure how much it made sense. That was all fine, so then I returned to the phlebotomist and she got some blood out of the side of my wrist. Then home!

 

The 19th of November.

Argh oh god the back pain. I cannot wait to see Dr. Blaney on Wednesday, hopefully he will be happy to organise a date for steroid injections and soon.

This morning was the usual – Sunday Brunch, blog post, coffee, then worked on the crochet until lunchtime. I need to start thinking about Christmas shopping, spending some time looking at what’s available.

After lunch, I went upstairs to brush up on some classic scrapes before this evening, put on my face, and take a lot of selfies while listening to Sia’s Christmas album.

Once I’d decided I’d done enough, I was back to work on Hank’s fleece. Irritatingly, I have run out of wool from the kit before he is finished, so I’m going to have to buy some more to complete his head. Maybe I’ll ask my instagram friend who works at Toft if she gets a discount on scraps.

The 20th of November.

Last night was much fun. I saw Paul and James before the show and they’ve been all over the place, must be exhausted. I know I was knackered by the time I got home. We heard about Al Porter resigning from comedy before it started and ended up having a chat about how some people are terrible. The show was hilarious – I do love a classic scrape.

This morning, we took the kittens to the vet for their first jabs. They were very screamy and scrabbly, but tolerated the injections. Carlton had to have his twice, because Katie went in his skin and out the other side. Whoops! He didn’t seem to notice, though. We will give them lots of treats tonight, especially Clarrie, because she’s 200g less than Carlton!

After bringing them home, we picked up Grandma and went into town. I went off on my own and had a lovely festive time! I got two pretzels from the German market – one salty, one with cinnamon sugar. My favourite. I bought two glass animals to go with my collection; a little grey cat and a black Scottie dog. Then I went to Paperchase to get some Christmas cards, and I had a nice chat with a girl about my glasses so I recommended Piccadilly to her. Then I went to Selfridges to see the Huda Beauty counter, and I bought a lipstick. While there, I saw a teenage girl opening the drawers, opening new lipsticks, trying them on her hand, and putting them back, which I thought was disgusting and rude. I couldn’t say anything to the staff at the time because she was right by me, but I have tweeted them and they were suitably horrified. I’m sure they will get lockable drawers quicksharp.

Then I was pretty much done, as were the others, so we came home and I have had a very restful afternoon.

The 17th of November.

Most of today, I have stayed sat in the armchair in fear, because twice when I got up, my chest hurt. I did not enjoy that, so I decided to avoid moving unless absolutely necessary. Thankfully, I have just tested myself and it felt alright.

So this morning, I fell back to sleep after my alarm went off, then I was woken up by some Bach on Desert Island Discs. Got downstairs and had to write up yesterday because I didn’t have time last night. Once that was done, I settled down in my chair to get working on Hank the Dorset Down Sheep.

And he has been my activity of the day! I left my chair to give the kittens lunch and go to the bathroom once, then I stayed put with my wool. I have made his head, body and two legs! Now my eyes are hurting but I only have prednisolone eye drops which don’t work as well as the dexamethasone, which I have run out of (unless I want to induce more agony with preservative). Not sure what I’m going to do until Monday.

The 18th of November.

Another day of much the same, but for slightly different reasons.

I got up when my alarm went off, and already my back was clunking. It has not improved as the day’s gone on, so I have stayed in my chair, trying to not be in pain. However, that hasn’t done me much good, and this evening I am unable to find a position that is comfortable.

I couldn’t watch Saturday Kitchen because Pixie Lott was on it, and I simply can’t bear her. So I put Bones on instead and got through two of those while I wrote up a late blog post, then made Hank’s other two legs. Plus I had tweets from Heidi that the crocheted item I made for her has arrived and she is very pleased, so I feel good about that.

After lunch, I made his ears and tail, then it was time to assemble him. Without his coat though, he is not cute. The rest of my afternoon, once he was put together, has been spent creating his woolly jacket. He’s not done, but I finished a ball of wool and that seemed like a natural place to have a rest. Currently it looks like he has a lovely vest on. I shall complete him tomorrow!

The 13th of November.

Sleep was not actually that bad, although I did wake up so cold, I had to drag my blanket over myself. I have the double thickness duvet on my bed now for winter, so hopefully tonight I’ll be toasty.

This morning, I went out with Mommy to do some shopping errands. First, we went to Aldi, because they have some decent crackers (Christmas, not Jacob’s) and are selling a cheap version of wool I like. Next, M&S for a pretzel and chewing gum (this was really just a bonus rather than a necessary trip), then we went to Boots so I could get a body brush to try to help my skin, circulation and lymphatic system.

After lunch, I have been sat with the crochet. My back hurts more than usual today – it’s like I’m having a delayed reaction to all the driving on Saturday. Every time I get up, I groan, like I am ancient. So I’ve sat watching The Blacklist, and just had to undo and redo an entire section of crochet because I wasn’t paying enough attention.

The 14th of November.

I forgot how heavy the double duvet is. Took me ages to get comfortable underneath the weight. It’s super warm though.

Today has not involved a great deal of excitement. This morning I used my new body brush thing and all the unsupported sitting made my back unbearably painful, so much so that I couldn’t finish moisturising afterwards, and I had to get Mommy to help do my legs. I’m not sure it’s ever been so bad that I couldn’t do what I needed to. Found out today that Dr. Antrobus has actually left (not ideal), but he had written my letter before he did, so it can get sent on to Dr. Blaney who can do the bloody steroid injections!

Afternoon was more of the usual – Bones, The Blacklist, crochet. Made another irritating mistake by being distracted. Nearly finished this project now – might get the last bits done tomorrow, but I’m seeing Vicky for sick person chats so we’ll see.

I am seeing Joe at The Glee tonight, which is going to be much fun. Distraction from life garbage.

Since my appointment yesterday with Dr. Thompson, I’ve been feeling pretty depressed. I know that physically, since the pneumonia and collapsed lung, I have found it hard to do much more than walk a few metres without struggling for breath, but to now have it confirmed that there is no hope of recovery is hard to hear. I had just got used to one standard of disabled life, and now I have try to envision the rest of my life again in this new version. I am tired of grieving for lives I thought I’d have.

It’s difficult when I spent months this year so chained to oxygen, having to exist as a blatantly, visibly sick person, and I hated it. Truly, despised it, because the first impression I gave was one of illness, and my appearance inspired pity in strangers. I cannot bear the idea of living a pitiful life. The very opposite of every intention I ever had. And I know that the next rung down on the ladder of lung disease is one where I am constantly adorned with plastic tubing. That scares me because living when it was so much effort to even brush my teeth was almost intolerable, and I don’t know if I have the strength to fight through every exhausting moment being miserable. I had rather decided that when it became impossible to be happy the majority of the time, I would find a way to end it.

But in the past, even when I have felt darkest, most lost, I still wanted to be alive. Or at least, I didn’t want to not be alive. I didn’t want to miss things, and I didn’t want to be the cause of the agony of death that I’ve felt more than enough times for any normal lifespan. I know I am most likely to die first in my family, but for it to be self-inflicted would be crueller than is necessary.

I saw Murder on the Orient Express today. There is a notion in the story, something I have thought about before, when we lost Dean – that when one person dies, there is a ripple, an avalanche. Everyone around them dies too, at least a little. I can’t instigate that kind of pain, not on purpose. I think there will be moments in the future in which I don’t want to be alive, not right then. It has happened before. But there are also always things to come that bring me happiness. Maybe I can adjust to a different life. Again. I just think that while I am able, I ought to endeavour to enjoy the time I have, whatever way I have it. To try to improve the lives of people around me, and use my voice to champion the things that have kept me here thus far.

Even when everything seems merciless and wearisome, for as long I can hold on to some strand of hope, I won’t let go.

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