Archives For sleep

The 23rd of April.

Oh god I have never been so excited about the fact that it is Monday tomorrow. Maybe my four month long saga of the fat right arm will be over soon.

Somehow I managed to press the snooze button this morning without my knowledge, but I didn’t continue to sleep for too much longer. I think I was slightly less coughy, but I had Zopiclone so it’s hard to remember. Thankfully the rest of the day has not been necessary to remember anyway.

Shockingly, it’s been mostly tv. Sunday Brunch in the am, Netflix this afternoon. I had a break in the middle for my traditional Gardeners’ Question Time and a lie down/pretend nap, but that was pretty much my only non-screen-based activity. On Netflix, I watched the first two episodes of 13 Reasons Why. I think I’ll download the next several to watch while I’m having to lie flat in ambulatory care tomorrow.

The 24th of April.

So it is done. I am praying so hard that it has worked this time but honestly I’m expecting to be disappointed.

Mommy woke me up for toast at quarter to seven, and then I couldn’t go back to sleep. I managed to kill time until we had to leave by redoing some crochet that I’d done wrong, and we set off just after 10:30. Parking was a nightmare, but we drove round enough times to chance upon someone leaving. Before going to ambulatory care, we went up to 516 to give Jenny her bear. She was delighted and put him in her pocket. We couldn’t stay too long, so we had a brief chat, then we went back downstairs and she went to check patients’ blood sugars.

I checked in at the desk at ambulatory care, then had to wait until the afternoon patients were let in. While we twiddled our thumbs, we saw Vash, the mother of a girl I was treated with at BCH. Turned out she was in a cubicle in there with some mystery virus. She did not look well, poor thing.

I had a very nice nurse who liked my hair (actually nearly every person I met commented on it) and got admitted pretty quickly, then a nurse from angio came for me because I was the only one on their list this afternoon. When we got down there, I went through the theatre check list again, and Andrew came for a chat. He explained what he was going to do, and we talked a lot about gadolinium (the dye he has to use instead of the iodine-based contrast he normally would), because I have so much during these procedures, more than a patient who’s had a lot of MRIs, more than anyone he’s ever seen and there are no studies on how this much of it can affect a body so he has concerns about that. I am just tired, I want it fixed.

We went round to the suite we were going to use. I shuffled across onto the bed and there was a who, then Andrew went to scrub in and the nurses prepped me. Covered in iodine. Once everything was set up, Andrew ultrasounded the edge of my groin to find the vein, then one of the nurses came to distract me while he got stabby with the local anaesthetic. He tunnelled up as far as he could, then he put some local in my fat arm and drove a wire up the vein in there so the two nearly met, and he used them to measure the blood pressures in those vessels, and he did a run of contrast so he could see if any strictures were there. The one he blew up in January had returned, so he was going to have to inflate that again, but with a better balloon this time. Before doing that, he wanted to use the IVUS to make sure there weren’t any more, and to get some more information about my superior vena cava. I could see the screens today, so I can tell you that an ultrasound inside your veins looks like the title sequence of Doctor Who. Like going into a black hole. From this, he was able to glean that there isn’t any more narrowing, but it is scarred. Lines for seven years will do that to you.

Satisfied that I only needed the one inflation, he gave me some sedation (they are not comfortable experiences) and I had a tiny nap. Then all the tubes and wires got pulled out and I had to lie there while he pressed very hard on the puncture site to stop the bleeding.

In recovery, I had some water, then the nurses took me and my notes back to ambulatory care. Mommy was coming back in at the same time, so we both returned to my bedspace and I told her what had gone on. Andrew came round too, and we talked through what he’d seen. He also explained that there’s no point in strenting the vein he inflated because it’s surrounded by bones and fibrous tissue so would probably just get crushed. I have to keep wearing the sleeve and squeezing the stress ball, and hope that this time it’s had the desired effect. I’ll get an appointment for his clinic. Maybe I’ll be able to wear something that doesn’t drown me.

The 7th of April. 

Oh man, it has not been a good day. I barely slept, had to keep turning over, but every time I did, my back was agonising. It has been horrific all day. If I move in even slightly the wrong way, I make involuntary noises out of pain. I have not been able to go and pet Spike because I cannot get on the floor.

First thing to filter through from the Today programme was that Trump had suddenly decided to send a load of missiles to Syria. Oh, good. World War 3 probably imminent. 

When I managed to get downstairs, I wrote up a blog post, and rang up the spa I’m going to tomorrow. I’m having a “body polish” and I just wanted to talk to them about my current condition before I turn up tomorrow. The lady I spoke to thought it should be fine, but she would check with her boss and call me back. She said it was fine, so I shall go a bit early tomorrow so I have time to talk to them and climb the stairs. 

After lunch, I was at the GP to get the pain patches prescribed (finally). I have to cut them in half to start off with and apply them weekly, so I’ll start them on Sunday. Really hoping they don’t make my breathing even worse. 

The 8th of April. 

So tired. Had Zopiclone last night to override the pain, but it didn’t really work so instead I had a bad sleep and I’ve been desperate to curl up in a ball and nap all day. Stupid brain and pain. 

This morning I had my appointment at the spa for my body scrub. I climbed the stairs (with help from the oxygen) and got taken into a little side room. Fran (the therapist) left me in there to get changed into the paper pants and underneath the towel on the heated bed. She came back in, and I lay face down with my face in the hole, and she systematically exfoliated all of my limbs and my back. Then I turned over, and she did the other side. I could tell she was wondering why my knees are so wrinkly or how I got the scar on my stomach but I didn’t feel like launching into the whole story. She did compliment me on the flatness of my tummy but it really only looks that way when I’m lying down and the scar is deceptive. 

When it was finished, she left so I could get dressed, but when I tried to sit up, my back screamed and I really thought I might be stuck. I had to fight through it, because I had to get off the bed and put clothes on. I’d just got my pants back on when she knocked to come back in so I had to put a stop to that. Then I just had to contend with getting my dress back on. When I was finally clothed, I opened the door, and she helped me back out. 

I am still tired. Bed soon. Please. 

The 5th of April.

Marginally better. My sleep was not as bad, but it still wasn’t good. However, my sats got up to 100% on just 1 litre of oxygen today, so I have been able to do some stuff without having to wear it at all. Spike has been allowed out of the cage to roam freely unsupervised, so I went to see him a couple of times without taking my little cylinder with me. They were not especially active trips – literally walked from living room to back room and sat on the floor. He just comes straight over for petting and purring. That is pretty much all he wants. That, and to be fed. He sheds so much though. My jumper is so fluffy. 

I wrote up a blog post, and spoke to the eye consultant’s secretary about sorting out another appointment, who said she’d talk to the booking coordinator. Hopefully a letter will materialise soon. 

I listened to episode 6 of S-Town, which was upsettingly relatable, particularly the line “You learn to live without.” Because I have. I obviously do not have the sort of love life that most able-bodied people my age do, and I don’t really think about it anymore. The man on the podcast said he’d been celibate for six years and I suppose I was surprised because that didn’t seem like such a long time for me. It’s been four years for me. I have stopped trying to connect with people, people who do not even see me. I have learned to live without. 

The 6th of April. 

I don’t know what is going on with my sleep pattern at the moment – last night was fucking terrible. Just before I woke, I was dreaming my bedroom was full of brightly coloured bugs and I was not a fan. 

Despite the ghastly night, my sats have been reasonable today – at one point this afternoon, they were 97% on air. It is a mystery to me. I’m supposed to see Dr. Thompson later this month, so I’ll ask him. He’ll probably just say something like “They vary all the time, you just don’t notice because you didn’t have a sats monitor before” and I don’t think that’s true but I won’t be able to prove otherwise. 

Another day of not much to report, otherwise. This morning we yelled at the tv a lot because some people seem to think that the law requiring children to attend school every day unless they are ill or there are exceptional circumstances is somehow bad and “being told how to bring up their kids”. It you’ve chosen to educate your child in the school system, then you should make them go. I don’t see how that’s unreasonable. 

I also got to tell off some Jehovah’s Witnesses. They came to the door and tried to give me some sort of leaflet. When I saw the logo, I gave it back to them and said “I’m sorry, I can’t take this because when I had leukaemia ten years ago, you would have let me die.” And I slammed the door in their faces. It was fun. 

The 3rd of April. 

I am so tired. Not just physically tired, but mentally, I am exhausted. I had Zopiclone last night which worked, but I don’t know how much good it did. 

Really, I feel like I am waiting for each day of the next three weeks to be over. That’s when my venoplasty is, but it by no means will fix everything. Well, it should fix my arm, but I’ve lost faith in its efficacy. I don’t know. Recovering from the pneumonia is really frustrating because improvements will be so incremental that I won’t even notice I’m getting better. I’m just hoping with every part of me that I’m not still needing oxygen at Machynlleth. Then there’s my back pain to deal with – I have an appointment at the GP to sort out starting the patches, which I really hope work because it hurts so much at the moment, I can’t even force myself to sit up straight. Then there’s my eye, no longer really causing me pain, but I can’t see out of it effectively – everything on that side is a blur. I haven’t got my follow-up appointment at the QE yet from when I saw the eye man in February so I need to ring up the consultant’s secretary about that. And let’s not forget the gynae issues that take up a chunk of each day too. 

I have nothing in the diary to look forward to in the next few weeks either. I’m worried the heavy cloud will descend once more. 

The 4th of April. 

Slightly improved today. Not physically, but mentally. I had a terrible sleep, tossing and turning, so my plans of extra sleep are not going brilliantly. 

Bad sleep has resulted in bad breathing, and even with 3 litres of oxygen, showering was quite the ordeal. It was not even that difficult in hospital, although that time I was not particularly active. Anyway, not an especially productive morning. Essentially, I got dressed. 

This afternoon, I let Spike out for a little explore before his lunch, and we had a very pleasant time. I rubbed his belly lots and tried to take pictures, but he doesn’t stay still long enough. Mommy took Grandma out into Sutton, and I sat and finished crocheting the most recent doily while listening to episodes 4 and 5 of S-Town. It is such a sad, sad story, for everybody involved – I can’t think of a single person who is having what might be called a relatively easy life. And it’s so complicated, and I doubt it will all be resolved in the next two episodes. Much like the last two books I have read, with their unsatisfying endings. I need something wrapped up neatly in a box.

The 16th of March. 

I am home. HOME! I have to go back tomorrow but eh, I get to sleep in my own bed tonight and that is all I care about. 

So the doctors came to see me this morning and said they’d stopped the mero after my 6am dose, so then the only thing that was left to sort out was my oxygen. I explained to them that I do have oxygen at home, so if that was all that was keeping me in, I was very much wasting a bed. They were surprised but pleased to learn this, and said that yes in that case you can go, but we need to confirm with Dr. Sutton. 

Then I spent the rest of the day waiting for it to be confirmed. However, it emerged at about half past four that actually, Dr. Sutton has been on a course all day, but he’d probably agree so that’s fine. But then there were issues with changing the dressing on my line and arranging nurses to flush it. Then they wanted me to come and see the vascular team at eleven o’clock tomorrow, but earlier today the pain team had phoned, saying they’d had a cancellation tomorrow and did I want to come at eleven? Of course, I said yes, so tomorrow I’ll see them, then go up to 516 and they’ll bleep the vascular team, and we’ll talk about my line and hopefully sorting out the motherfucking venoplasty I’ve needed for three months. 

We finally left at six and I am at home and I am really looking forward to my bed. 

The 17th of March. 

Oh, sleep in my own bed is good. I did wake up a couple of times, but so with it for duvet and electric blanket. 

I didn’t get the lie-in I’ve been waiting for because I had my appointment at the pain clinic at eleven. We left at ten to allow for traffic and parking, but even that was not enough as there had been an accident in the Queensway tunnel which made the traffic utterly solid. It was incredibly tedious, but we eventually got to the QE only half an hour late. Thankfully, I was still able to be seen (I did ring to let them know I’d be delayed) and met a Dr. Blaney who has several avenues of thought we might go down – I will start with a patch via the GP, and we have multiple drugs I can try to hopefully find one that works and doesn’t give me side effects. He’s also going to refer me for physio so I will get that appointment at some point. There’s also the option of steroid injections if nothing else works. 

After that, it was up to 516 to see the vascular team about my line. It emerged that nobody up there really knew what was going on, until one of the doctors who’s been seeing me arrived. She went to see Ben about what he wanted, and we went to have some lunch. While sitting in the foyer, I saw a girl I met at Euston recently who I got chatting to about NG tubes (she had one) which was extremely random, but really good because I wasn’t able to get her name or anything before, so now I have a new pal!

Shortly after seeing her, my phone rang, and it was nurse Connor. The doctor had come back and they’d spoken to the IV team and basically, he was going to take my PICC out. That was grand, so we returned to the ward, and I lay down in the consultation room and experienced the lovely sensation of having something really long pulled out of your veins. It’s not painful, but there’s definitely an awareness there. I don’t really remember the last one coming out because I’d had midazolam and they let me do it. Then I had to hang out there for half an hour to make sure I didn’t bleed everywhere, then I escaped (again)!

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.  

The 26th of February. 

Happy Birthday Mommy!

I had a rather dodgy sleep, I think because of eating rich food much later than usual. Fucks up my system. 

Mommy opened her presents while I ate my toast. I gave her a teeny pot for putting herbs or a tiny plant in, and an enormous book of pictures of dogs. It’s got nowhere to live, but it amused her, which is what’s important. Besides, Tuesday is her proper present. 

She and Daddy went to pick up Grandma, while Christine finished cooking all the food and I wrote up a blog post, then twiddled my thumbs until it was time for lunch. As soon as we saw the Easts/Reames materialise with cake, we were up and opening the door. So hungry!

The afternoon has been rugby, drinking and eating. Christine, Becky, James, Jonathan and I decamped into the living room, where there was much bickering and teasing, but all in loving intent. We are essentially family.

Christine had to leave at twenty to four, so we cut the cake, but mine is still beside me, waiting for my tummy to have room for it. I’ll get there.

The 27th of February. 

Oh dear, I had another terrible night. It took me hours to fall asleep – I think on Tuesday night I might have a Zopiclone if things don’t improve. I would do it tonight, but I’d like to remember tomorrow. 

No excitement today. I rang the GP about getting some more stuff added to my repeat prescription, and left a message for Imelda, Andrew’s secretary, but she hasn’t called me back. Will try again in the morning. 

Otherwise, I have been crocheting, and Mommy and I watched the final three episodes of Case. It was not completely satisfying – I don’t see why the murderer had to get killed, instead of being put in prison, especially as they were on their way to arrest him. They’ve left it open for a second series (on a different thread) but I don’t know if we will bother.

I am very excited for Mommy’s birthday surprise tomorrow. I hope she enjoys it.