Archives For chiro

The 16th of October. 

Started my day with a phone call from Shaki. She was outside, about to put some paperwork through my door, but didn’t want to come in because she has tonsillitis, bless her. Poor us. 

Once dressed, I got downstairs and promptly chucked my water over the table in the living room. This meant I had to take everything off it, including the heavy glass top so the embroidery underneath could dry. Well done me. 

I rang Emelda to discuss my next appointment with Andrew, but found out she’s on annual leave. Rats. I’ll try Christine, the appointments lady, again tomorrow. Then I wrote up a blog post, trying to ignore the apocalyptic light that’s been over us most of the day. 

Lunch, then sat here crocheting a cowl most of the afternoon. Suddenly it was half past four and we had to go to the chiro for my rescheduled appointment. I knew it was going to be painful, but necessary. The muscles that go up either side of the spine had contracted so no wonder I’ve been in more agony than usual. Plus lying on my front on that floor has been bad for my neck so it was a generally unenjoyable visit. 

I also spoke to a lymphoedema nurse because I’ve not been able to wear my compression garment today because it has made the skin on my elbow raw due to it being so tight. Going to try another brand. Why is nothing ever simple?

The 17th of October. 

This is exhausting. I think last night was better? The cough has been pretty similar today – I’m still bringing up phlegm the same colour as before so I emailed Dr. Thompson again. Today is the last day of the co-amoxiclav, and the last sputum sample I gave was essentially spit so obviously it hasn’t grown anything. Anyway, he wants to leave it a few days and we’ll see how I am. 

Spoke to St. Giles again and they want me to have a made-to-measure sleeve, so I’m being measured for that on Thursday. Also spoke to Mr. Titley’s secretary because I haven’t had my letter about Tuesday yet. She said one has been sent, but if it doesn’t arrive by Thursday I’ll be ringing her back. I do need to know what time to turn up etc. This cough better have fucked off by then too or we’ll be in trouble. 

I spent my afternoon watching stuff on Now TV and crocheting the cowl. It’s finished now. I watched the Nashville concert at the Royal Albert Hall and got emotional at Stand Up because it reminds me of Dean. I miss my friend. 

The 10th of September. 

Today has not been so terrible, in terms of pain, but I have still felt pretty shit all day. 

I’m still tired, from not sleeping properly due to pain, so I got up just before the start of Sunday Brunch and got dressed in a cosy jumper and leggings, because the weather demanded it. 

I have, again, not moved a great deal, but also have not crocheted at all because I just can’t concentrate. I thought, after lunch, that I might need a nap, so I went upstairs to lie down. I put on a podcast, curled up and closed my eyes, but I did not fall asleep. This is good; it means I am not ill! Just feel shit because I’m tired and in pain. Preferable. 

After coming downstairs from my rest, I watched three episodes of Bones that had appeared overnight, and tried some Hugo petting. I forced him on to my lap and stroked until my arm was tired. He must learn to enjoy it. 

The 11th of September. 

Another early start, but for a good reason. I met up with Adam this morning, because he’d come up to the QE to talk to some of the nurses about stuff Dean wanted to do. It was really good to see him and give him a big hug in person, as opposed to verbally via direct messages on Twitter. We talked about how it had been in the last couple of weeks, and at the end, and his incredible appearance on Victoria Derbyshire. How he’s coping, how I am. There are things that are being planned in his name that I am looking forward to seeing. His legacy will live on. 

He had to get going up to YPU, and I had to go home for lunch before my chiro appointment. Trine has managed to make me feel some relief – it appears one of the muscles on the right side of my back had gone into spasm and travelled all the way up (or down, I’m not sure which end it started) which meant all of that side was contracting. No wonder I was in pain. She managed to work some of it out, while I gritted my teeth. Thankfully it hadn’t transferred into my neck, so I just needed some ice pack treatment when I got home. 

Since then, I have crocheted some mice for the kittens to play with. Henrietta has appropriated an old one which is incredibly tatty, so now they have some more that aren’t falling apart. 

The 23rd of August. 

Another disastrous night. I seem to be incompatible with sleep right now – it might be time for Zopiclone again. 

Not a great deal to report today. This morning, I had a bit of kitten fun time before writing up a blog post. That took considerably less time than Monday, because I used a different app to upload the photos. Mommy and I had chiro appointments, so went out at half past twelve to be stretched and crunched. There was a lot of tightness in my lower back, probably from my long days in the wheelchair in the time between visits. I can’t wait to see the pain man again. Steroid injections please. 

Came home, had lunch, checked on kittens. Mommy went to Grandma’s, and I spent a couple of hours writing, then watched the season 3 finale of Buffy, realising the similarities between the Mayor and Trump. It would not surprise me if he wanted to become a demon. 

The 24th of August. 

I had Zopiclone and it was good. I slept until half past nine, and this morning I did some kitten petting – Henrietta didn’t hiss at me, and she even gave Mommy a friendly headbutt! Definite progress. Denise is coming round this evening to meet them and pick up paperwork, and Penny is coming home this weekend so she’s coming to meet them too. 

This afternoon, I had a hairwash, which will hopefully stop the green rubbing off on my pillowcase, as I discovered was happening last night. I had a quick look at my copy of James Acaster’s Classic Scrapes which arrived from Amazon, and I am very much looking forward to seeing him again in the autumn. Since then, I have been finishing off the doily, which now needs starching or something, to look how it’s supposed to. 

Sorry for the lack of words. Life is pretty banausic right now. 

The 12th of July. 

Venoplasty day!

Any day in ambulatory care means getting up before six which is not ideal, but necessary. I was last to arrive in my section, but that didn’t matter because I was third on the list, so there was no rush with my admission. I didn’t expect to go down until about eleven, so I was very surprised when a porter arrived at twenty past ten. The nurses didn’t even know, so I had to quickly go pee and put my gown on. 

Across in angio, I said hi to all the team, and Mr. Singh (who put the PICC in) came to consent me. Then Andrew came and we had a chat about the plan – it was left unspoken that this is our last shot. 

On the table, I was prepped, covered, cleaned. It is a testament to the greatness of the team that I have to be essentially naked in front of the whole room for a while but at no point did I feel undignified or unsafe. My groin was ultrasounded to find the vein, but there seemed to be trouble getting into it because I heard a lot of talk about scarring, then a dilator had to be used to hold it open so the sheath could go in. Then there were issues with the wires – people had to keep getting different ones from the wall. I think it was to do with the length or the stiffness? They were having to get all the way from the groin up to my neck, which is pretty far. They did a couple of runs with the gadolinium to check everything was in the right place, then it was time for fun and sleepy drugs. I got the nice, warm fuzz, then the discomfort of having balloons inflated inside you. I think they did maybe six inflations in total? They used the two biggest balloons available, in one site in the neck vein, one in the SVC and again a little bit further down. Then everything came out, and I had the awkward five minutes where a man leans heavily on my groin to stop the bleeding and there isn’t much to say. 

I went into recovery about twenty past twelve, where I had to stay for half an hour to make sure I was fine before they’d take the PICC out. When it came to that time, the nurses had changed, and the new one hadn’t done it before, so we had to grab a doctor to do it. The nurse watched closely, but there isn’t much to learn – just pull it out, then put some pressure on the hole. Then the nurse was able to ring the ward, where a student nurse said someone would come for me. Forty five minutes later, she rang again, and the staff nurse said she hadn’t passed on the message, and came straight away. I was fine; another nurse had shared her Jelly Babies with me and I only had twenty minutes of lying flat left. 

Back in ambulatory care, I asked Mommy to get the flowers and chocolates from the car because Emelda and Tracey would be gone by the time I’d be able to, so she delivered those and then got me some coffee and a sandwich, which I was only too eager to get into my face. Then we just had two hours to kill, so I was checking the tennis and talking to Mommy about what had happened in angio and what we do now. I have to keep my arm elevated a lot and try to squeeze the fluid down. We’re going to see if the massage people at the chiro do lymphatic drainage, and if that could help me. I’m also considering acupuncture. Anything that will get this swelling to go down. Anything at all. 

By half past four, I’d got myself ready to go, so I was given my discharge letter and we were out of there. I had a ticket to hear Matt Haig talk about his new book, How to Stop Time, at Waterstones at half past six, and I needed some dinner first. I ended up having a cinnamon crêpe and a chocolate milkshake because I am an adult and I can. 

Because of the wheelchair, I had to use the lift to get to that second floor, where the event was, which meant I basically jumped the queue. However, I chose to sit at the front which was good for watching the interview, but then I was at the back of the queue for the signing. However (and I honestly don’t know why this happened), some people near the front said I could go in front of them, so I got out a lot quicker than I might have. I just wanted to tell him how much I loved Reasons to Stay Alive. I’m so excited to read this new one. 

The 13th of July. 

Trying not to get sad. I’m pretty sure the venoplasty isn’t going to have worked. I’ve spent most of my day looking for effective treatments for lymphoedema. 

I had a chiro appointment this morning, which I was very thankful for because a) my neck has been really clunky recently and b) I wanted to ask about the massage/lymphatic drainage thing. Turns out my neck muscles have been recruited to help me breathe so they’ve got all stiff, and Trine’s not sure if they do this but she’ll find out on Monday. 

When we got back, I wrote a long entry about yesterday, watched two rather short Wimbledon semi-finals, and did a lot of internet research. There are the standard treatments of drainage massage and compression garments, but honestly they don’t sound very effective. There is a chance that acupuncture may have a small amount of benefit, but I’d want to know somebody who’d had it, not just pick a random practitioner. Or there are surgical interventions, and frankly I am leaning towards those. I will try anything. I just want my arm back. I want to not feel deformed. 

The 9th of May.

Stupid eyes today. Not sleepy, but painful. I have a review at the eye clinic coming up next week so I’ll bring it up then but ugh. It is just so frustrating when it seemed to be getting better.

This morning, I wrote up a blog post, and tried on some dresses I’ve ordered for John and Maddie’s wedding. I’ve got to find something that will accommodate or disguise my arm because I can’t wear what I originally planned to. One of the three is okay, I think. I need to look at it again before I send the other two back.

This afternoon, I’ve been sitting with Sam and I watched the last two episodes of 13 Reasons Why. Shit, I can see why it has caused quite so much controversy – watching Hannah slit her wrists is really horrific and I found myself holding on to the cat quite tightly to cope. I related to the moment before she got in the bath, when she looked in the mirror. Like she was saying goodbye. I feel like I’ve got to that place before, but I have always turned back. I have never really needed to die, I have just wanted whatever was so bad to be over, and I hoped that life would be better afterwards. I always have hope. Which I suppose it’s part of what keeps me here.

The 10th of May.

I have felt like total crap all day. It began with a pretty terrible sleep, because I had to sleep in Christine’s bed last night. Yesterday morning I spilled orange juice on my carpet, and the carpet cleaner smelled so strong, I couldn’t sleep in there and comfortably breathe.

This morning I had a chiro appointment, and it was all a struggle. I got myself into Trine’s room and she found that the muscles in the left side of my back were very stringy. I don’t really know what that means but it wasn’t very pleasant, having them made un-stringy. It is probably from sitting in my wheelchair all weekend at Mach.

I was supposed to be at the dentist and hygienist this afternoon but I could barely breathe just sitting up, so doing it with lots of instruments in my mouth was not going to happen. Cancelled that.

So, I had my lunch, watched new Pretty Little Liars and iZombie, then curled up on the sofa to have a rest/nap. I put on a Gardeners’ Question Time and closed my eyes (which have been hurting too) and I think I did occasionally nod off. I certainly remember jerking awake. Not really sure what that means for me as I can only sleep in the day when I’m poorly, so I’m really hoping it was just because I’m knackered.

The 28th of March. 

I have felt a-fucking-trocious for most of my day. High levels of oxygen have been required, and even then I have not felt so good. 

This morning I was needing 1.5-2 litres of oxygen just to sit and eat my breakfast. I finished the monster doily, then there wasn’t much morning left before we had to go out to Black Sheep. 

Obviously I took a small cylinder of oxygen with me, and I was doing alright to begin with. However, after James had put the lightener in, I had to go to the bathroom and I knew I wouldn’t get there without help. Because of the fumes and the spray etc in the air, I had to put it up to 3 litres and I was still struggling, but I didn’t want to go any higher for fear of ploughing through the cylinder. I had to text Mommy to get her to bring me a new one mid-appointment because the small ones only last 1.5-2 hours on high volumes. 

I told James off for leaving, but I forgive him because his reasons are good and Saskia will take care of me. We have nailed it with the colour – I look like a load of pixie sticks have been tipped onto my head. In a good way. Michaela is having another baby so I congratulated her, and she gave me a trim. 

I got home at about half past four, so not much has happened since then, but I’ve got the oxygen down again, thank god. I felt absolutely awful. 

The 29th of March. 

Vast improvement. I had a crappy sleep which I am putting down to low sats – when I sat up, they were 88, despite me having been on oxygen all night. However, I have got better since then.

This morning, I wrote up the blog post I should have done yesterday, we had a delivery of oxygen, then I had my rescheduled chiro appointment from last week. I was considering postponing it again, but I did not feel too terrible and my back had started protesting. 

I took the small cylinder with me, so I was able to get into all the necessary positions, which was good because pretty much all of my back had tightened up. Surprisingly, my neck didn’t need any crunching, just massaging into submission. 

Once home, we had lunch, then I updated my phone software (I know) and took a lot of selfies to document my new pretty hair. I started crocheting a new doily, and I’ve got my oxygen down to 1 litre. I wish we could work out what causes me to need it more some days and not others. Knowing me, there is probably no reason.  

The 28th of February. 

Happy Secret Surprise Day! Looking back, I actually booked this in August, so well done me for having the foresight to check so far in advance. 

No entertainment on the trains this morning, just the policeman I saw surreptitiously tucking a spoon into his jacket. Was he expecting some kind of cereal emergency later on? I will never know. 

The Euston chap arrived promptly with the ramp, so Christine wasn’t waiting to meet us for long. We all got in the lift, and went down to the taxi rank, where I asked the taxi driver to take us to The Ritz! Surprise!

The doorman had to get a minion to let us in (ramp issues), so we got to go in the back way, seeing the private cars parked there (including an orange/gold Bentley 4×4 with the numberplate “I GLO” which was hideous) and the “private quarters” on the way to the afternoon tea area. Our coats were taken, and then I rather awkwardly had to take the arm of the maître’d as he took us to our table, because I am obviously infirm. 

We sat in the corner, so I oversaw the rest of the diners, and Mommy and Christine watched the people who were having some sort of reception behind me – honours were being given out at the palace today and we think Kirsty Young may have received one. Unfortunately, to confirm, I would have had to turn around (and quite blatantly stare) so we were forced to speculate. 

We ordered our teas (I was intrigued by a chocolate mint one, but settled on Assam Tippy Orthodox, so it wouldn’t fight any food flavours). 

The tea stand arrived, full of sandwiches and cakes. It’s a funny procedure – you eat your sandwiches (ham with grain mustard mayonnaise on sliced brioche, cheddar cheese with chutney on tomato bread, cucumber with cream cheese, dill and chives on granary bread, chicken breast with parsley cream on malt bread, scottish smoked salmon with lemon butter on sourdough bread and egg mayonnaise with chopped shallots on white bread), then when they are gone, they bring you more, plus the (still warm) scones with jam and cream. Scones are the best part – when they break apart without the need of a knife, they are perfect. I hate jam, but I like a very thin layer of cream, so it’s like butter. 

The cakes were a tad disappointing, but that was only in my opinion, because they all contained cream and/or some kind of fruity crap, which I do not like. Thankfully, my experience was saved by the cake trolley which came round, and I had a slice of chocolate and hazelnut loaf i.e. Nutella cake. 

By the end of this, we were all suitably stuffed, and we had to vacate the table by 3.15, so we retrieved our coats from the cloakroom and get one of the many waiting cabs to the V&A. 

We arrived a little early for our allocated slot in the Undressed exhibition, so we wandered around the free area, looking at the tombs of knights and stained glass until it was time to go to the fashion gallery. The exhibition was all about the history of underwear, so started from the earliest forms of corsets, up until the present day, which included the waist trainer. Funny how things come full circle like that. There were also historical pyjamas, dressing gowns, underwear as outerwear – Kate Moss’ infamous see-through dress was there, and one of Dita von Teese’s corsets. There was a beautiful gold crocheted dress; something I would love to be able to make. 

When we were finished with the exhibition, we had a chat about what to do next, and it seemed that the most sensible thing would be to stay at the museum until it closed, looking around the rest of the free exhibitS, when we would get a cab back to Euston. 

So for an hour we bimbled about, looking at Raphael’s cartoons (not that kind of cartoon) and learning about Lockwood Kipling, father of Rudyard, but a man of whom I had never heard. 

When we left the museum, Christine went to get the tube home, and Mommy and I climbed into another waiting taxi. Very lucky with them today. Then it took us a good half an hour to get back to Euston, where we purchased magazines and beverages, then took up our usual spot in the assistance office until it was time for our train. 

No waiting in the cold on the platform today, and no delays getting back, so this time we were home by half past nine and I am happy to have given Mommy a nice birthday treat. 

The 1st of March.

Argh. Had Zopiclone last night but it did no good, just feel crap today without having had any extra sleep. Breathing has been dreadful. 

Mommy and I were both at the chiro this morning, with her going first. When it came to my turn, I got her to work on the thing that happens across my back when I lie on my right side (which I have to do to sleep), and she stretched out the abdominal muscle that has been spasming multiple times every day. We shall see tonight if it’s had any effect. 

This afternoon, I’ve been writing about yesterday, trying to talk to Imelda/anybody that can tell me what’s happening with my arm, and agonising about the Old Hallfieldian Society meeting tonight. My breathing has been so awful that I really didn’t feel like I could face it, but I didn’t want to be the reason behind another cancelled meeting because there wasn’t a quorum. 

I decided I would go, and if they needed me, I would stay. Then, when Celia answered the door, she said just to stay for half an hour while Mommy read the paper. So I stayed for most of the agenda, not contributing much but that didn’t matter.

Now, back home, and I’m going to have pancakes.