Archives For sleep

The 11th of May. 

Shortly after tea last night, we decided that my breathing was so poor, a trip to A&E was required. I was just coughing and coughing, and I needed 3 litres of oxygen just to be comfortable. My chest was tight, and I couldn’t get a deep breath for the life of me. 

Because I was having trouble breathing, and my recent history, I was whisked through A&E pretty quickly. I was seen by a sensible doctor who took some blood and sent me for a chest x-ray. Thankfully my lung had not collapsed again, but I have got some fluid on there which looks like infection and my CRP is 93 so antibiotics are required. It was a good thing we’d brought a bag. 

I got to CDU at about half past midnight, so Mommy quickly unpacked the necessary stuff and went home. I was up for a little while longer, getting admitted and brushing my teeth. One of the old ladies in my bay talked in her sleep. Constantly. Last night’s gem was “That’s a good girl, now get in the cupboard.”

Managed to sleep through breakfast, got up to go to the bathroom and clean my face, then curled up on my bed again and slept for the rest of the morning until Ram suddenly appeared. I assume because he’s my named consultant, he must get notified if I get admitted. I told him what was going on, but because it is a chest problem, he doesn’t really have much to input. 

Mommy arrived just as he and his minions were leaving, and she had brought coffee and food. I still found it difficult to rouse myself, just sat up every so often for a mouthful of coffee. Eventually I consumed enough to wake myself up, and for the rest of the day, I have tried to stay upright. Daddy came earlier than usual, but he was sleepy too, so we sent him home so he could have a nap and give some attention to Sam who will be confused that I haven’t been there to pet him. 

Ben came to see me and we had a chat about my lungs. I told him what I’ve been telling everyone else, that I had been getting better but for the past few days everything’s been getting worse again. He said a curious thing about my x-ray in that one side is more lucent, that is to say more see-through, than the other. This could be caused by a stenosis. ANOTHER STENOSIS YOU SAY? HMMM. Need a CT with gadolinium. He wants to talk to Andrew but Andrew won’t be back in until Monday. Gah. 

I am in a bed on 517 now. Meropenem for a few days, see what my CRP does. I’m in a bay which I hate because I have no control over when the lights go out or come on or if people are noisy or in the bathroom when I want it and I don’t like it at all. I don’t want to be here again but I have to and it is wank. 

 

The 12th of May. 

I had a terrible night and start to the day, but thankfully since mid-afternoon, it has been greatly improved by the fact that I have been moved into a cubicle. 

I was forced awake by loud chatter in the bay between the two old women and two auxiliaries, and the woman opposite me has been playing Radio 1 as loud as the radio will go through the headphones, which is loud enough to have to raise your voice to talk over. She did not seem to realise that this is terrible bay etiquette. 

Because of the terrible night, I felt like garbage, but the nurse had promised me a cubicle today, so I asked Mommy to come in early to help pack up my stuff if that happened. That obviously didn’t happen until later, but I was glad to have her there so she could draw the curtains round and I could have a cry about how ghastly everything was. 

It seems this ward is where they send all the old people who come in to A&E with relatively short-term issues, and people with mental health issues that aren’t being taken care of by any other service, so it is really not somewhere I belong. However, Mommy ran into Ben and he said 516 is full of the over-90s so I might be here for a few days. 

Some haematology doctors came to see me, but they had not much to say apart from let’s get some bloods done to see what your CRP is. No respiratory ones but they wouldn’t have much to add yet anyway so no great loss. 

Around 3 o’clock, the nurse in charge poked her head in and said they were just clearing a cubicle for me. Thank god. I could not shove my stuff in bags fast enough. Now I might be near the nurses’ station but I’ll stick my earplugs in tonight and the Zopiclone will do its job. 

My breathing is not as bad as with the pneumonia but I feel arguably worse now than I did in March. Like I am listless and have no appetite, and I am just exhausted of this bullshit. Can I please be well? Just for a little bit?


The 13th of May. 

Having my own room certainly makes a difference. I slept much better, until half past eight when someone came in to ask me about drugs, to which I said NOT DRUGS TIME YET and went back to sleep until ten o’clock. 

The consultant of this ward came to see me this morning but he hadn’t got much to offer. My CRP has gone up from 93 on Wednesday to 139 yesterday so the mero has yet to take any effect. Great, thanks. 

Mommy came at lunch time, and Becky arrived shortly after to spend the afternoon. She and Mommy did most of the talking while I coughed and flailed around on the bed in various positions trying to find one that was comfortable for longer than thirty seconds. I was not successful. The usual school and cat chat which is a nice distraction for me. At some point, Tim from haematology came, and he was asking which antibiotics I am allergic to. It turns out that they’re the ones that they would add in with mero to cover a broad-spectrum of infections. Stupid unhelpful body. If I could bring up some cack they could test that and find out what bug it is, but this is the driest cough in the world so that isn’t happening. 

That is all I really have to say about today. I still feel like trash, the drugs aren’t working and I am desperate to go home. 

 

The 14th of May. 

I’ve done less coughing today, but I think that’s because I have done more lying down. Usually, lying down makes it worse when I have a cough, but this time it’s the other way around.

I woke up about ten again, and quite early in the morning, a doctor came to take some blood but the results are still not in which is most bothersome. I highly suspect that the mero is not working because when Mommy arrived with lunch, I was really cold, and that is because I was spiking a temperature. Haven’t done that since sepsis in 2013 but I don’t think we need to worry about that just now. 

Pretty much my entire afternoon was spent lying down and trying to get back to a normal temperature while listening to whatever came along next on Radio 4. It’s quite clear I’m feeling ghastly when I don’t think I need to be able to see. 

 

Mainly I have been thinking about how much I want it to be tomorrow because all the doctors will be here and we can have a chat about what the fuck is going on and how it can be fixed so I can leave here and go feel like shit in my own bed. 


The 15th of May. 

I am sick of this. I have spent my whole day waiting for people. Mostly, it was doctors. I had spent the whole weekend waiting for it to be today so I could speak to the respiratory doctors and they did not materialise until nearly four o’clock. 

This morning, I saw the doctor from this ward and the haematology team, but they had nothing really helpful to say apart from that they’d speak to the respiratory team. 

So about four, Ben turned up with an ultrasound machine. He’d had a chat with Richard and they want to know where the infection is coming from, and so do I. The ultrasound machine was to check on the fluid in my lungs, but there’s only a small pocket at the top of the right lung so that isn’t it. He’s changing the antibiotics from meropenem to vancomycin and ciprofloxacin, and I’ll get onto that later. He’s also going to request a PICC because I’ll need vancomycin levels taking and my veins won’t be able to cope with that, and an echo because I’ve had some vascular trauma and hey why not? If those don’t work, then we get a PET scan to search for the source of the infection. 

I am pleased to have a plan but I still feel awful, and the vancomycin has compounded things. It took two hours for a nurse to set it up, and pretty soon it started leaking out of the dressing. This was just after half six, so Mommy and Daddy left and they let the sister who’d set it up know. Someone finally came in just after eight, and she just set it running again but really slowly and hoped that would work, but if it didn’t, to buzz again and she’d sort it out. It didn’t, it just started leaking again, so I pressed the buzzer again. And again, and again. Only to find out after ninety minutes that there wasn’t actually a qualified nurse on the ward and now it’s past ten and this cannula is going to have to come out when one finally appears. 

This is the worst I have ever experienced in terms of staff shortages. 

 

The 16th of May. 

Well I finally got my vancomycin. At half past six this morning. The nurse that I’d had for the past four nights came in for a fifth, unexpected consecutive shift because there were no staff across the board, it seemed. She took the cannula out, but then I couldn’t have a replacement dose until I had a new one and that was going to be very low down on the night doctor’s list of jobs. They finally appeared at about half past six this morning, but I had my eye mask on and ear plugs in so I was pretty unaware until the vanc was finished and it was time to get up. 

The first thing that happened today was that I went for an echo. I looked very pitiful in the waiting room, hunched over in the strange, triangular wheelchair with my oxygen cylinder, coughing like a Victorian street urchin with TB. The receptionist got me some cold water, and thankfully they took me through quite quickly. It was probably the fastest echo I’ve ever had – I used to fall asleep in them but today I didn’t even have chance to get comfortable. That may have been because the test wasn’t going to find what the doctors were looking for, as I think I heard the technician say. Oh well. 

This afternoon, I did a lot of coughing and flooping about on the bed. The cough has evolved into the kind where I do it less, but when I do, I cough and cough until the piece of phlegm moves, and then I am fine again for a while. Philippa from the liver team came to see me, and was telling us some vastly entertaining stories about the ward, when a porter rocked up to take me to angio for my PICC line! Surprise! 

We had great fun downstairs because the ward hadn’t done a checklist, because they never send people for things like this so they didn’t know they had to do one, and then I’d been eating and drinking and had nail varnish on. That didn’t seem to be a problem though, so a doctor called Mr. Singh came to chat to me about what we were going to do and I signed the consent form. 

It was not an easy one today. He kept coming up against an obstruction in my vein, which I could feel him trying to shove past (newsflash: not enjoyable!), and two other chaps behind the screen were shouting advice at him while I clenched my jaw and wished I had nice veins. He ended up inflating two balloons so he could get the catheter past, then he finished tunnelling it in and I could finally relax. 

I want to go home. I say it every day. Not going to change. 


The 7th of May.

The eyes are less sleepy today, and that is welcome, but what is less so is that it has been painful to have my left eye open since I woke up, no matter how many eye drops I put in.

It’s been a day of mainly blog admin, so a short entry today. This morning, I wrote about yesterday while watching Sunday Brunch, occasionally muting it when Pixie Lott was on (I’m sorry but I just can’t stand her).

After lunch, I finished typing up the six blog posts, and they are scheduled to be published over the next several hours. While I did this, I watched four more episodes of 13 Reasons Why. Now I have four left, and I don’t know if I can be arsed to watch them or if I’ll just read what happens. I want to know, but the show is kind of a drag.

I have been thinking more about my arm. Of course I have, I think about it all the time. I wonder if we are being somewhat narrow-minded about the cause? Is there anything else that could be the reason behind the swelling? The only thing I can come up with is lymphedema, but if it is that, surely the compression garment would be having some kind of effect? None of it makes any sense.

The 8th of May.

I am desperate to have a nap again and my level of pain is still the same. Probably going to have to double the pregablin I think, so I will get even sleepier. But maybe that will wear off and the pain will get better.

The only interesting thing that happened today was that I had my appointment with Mr. Titley, the plastic surgeon that Miss Byrom had written to about me. First of all, I had to tell him my entire history, and there’s so many things to remember now. I’m going to have to write down exactly what I have been through and when in a relatively concise format. I almost forgot about the venoplasties, despite my arm being literally right in front of me.

Anyway. We then moved on to why I was actually there. I ran through my history with the Women’s and Miss Byrom and what we have been through so far. He talked to me about what he has done for Miss Byrom before, which is not like what I will probably need, so I may well need some kind of bespoke procedure. Typical of me. However, he can’t offer me any particular treatment until he knows exactly what he is dealing with, so I will need to be examined under general anaesthetic. He needs to talk to his anaesthetist who will need to talk to Dr. Thompson, then I’ll probably get a date for another ambulatory care day.

He asked what I’d like to get out of this, and frankly I just want one part of my body to do its fucking job like it used to. If someone were mad enough to want to date me, I don’t want yet another reason to put them off. Considering the fact that most men ask if I can still have sex when they find out about my disability, I’d like saying yes to not become a lie.

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)!