Archives For pain

The 9th of April. 

Today has been less terrible. I can’t remember how I slept, but I’m not so tired this evening. Still in a lot of pain, though. I don’t understand what’s kicked it off in the past few days – normally it’s bad, but I can cope and ignore it, whereas now I am struggling much more. It has done this before, but it’s usually after I’ve been sat in my wheelchair all day or something. This started overnight. Still, today I have started the Buprenorphine patch so let’s hope it starts to kick in. It does not appear to be making my breathing any worse than it already is, hopefully it stays that way. 

It’s been a standard sort of Sunday. Sunday Brunch, blog, crochet. Despite the sun, I have not been in the garden, but I listened to a lovely episode of Gardeners’ Question Time on their 70th anniversary. I have reached peak grandma. 

Christine has flown off to Denmark today for a pre-Easter holiday, so we talked this morning and when she landed, and I let her know that there had been an incident with the vacuum and her wardrobe. It still functions, it’s fine. 

One week down. Two to go. 

The 10th of April. 

A sleep that cannot be described as good but equally was not dreadful last night. My back is less painful, although I don’t know if that’s due to the patch or if it’s just going back to normal, the way it was before Friday. I suppose I need to start paying proper attention to the level of pain I’m experiencing now I’ve started on an attempt at managing it. 

Becky came round this morning because I haven’t seen her for ages and they are off for a week down south. We had a catch up about family stuff, school, and times when we have both nearly burst into tears at people recently. Thankfully we were both able to keep the tears in while it was necessary. 

She stayed for about an hour, chatting and meeting the kitty, then she had to go home and eat lunch before they went off on their way. 

Mommy went to Grandma’s, and I sat with the laptop to do some Cats Protection admin, as there have been several adoptions done. I haven’t facilitated them, obviously, but I still have to put the details from the forms on Catalog. 

Last night, I caught myself almost getting bitter about why, out of all the people I knew, it had to be me who had their whole life taken away, who didn’t get to do what they always dreamed of. I had to stop that train of thought. I can’t let myself go there because I will become embittered by my experience, when what I need is to become encouraged. 

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 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 12th of February. 

Really tired, although I really have no excuse to be. I slept all night, whereas Mommy was awake at four. I did have a dream that someone murdered me with an injection to the back of the neck, and that woke me up at about one. I could physically feel where the needle had been. So not a great sleep. 

This morning, I wrote up a blog post, then watched Sunday Brunch in my pyjamas while I finished crocheting all the parts of Carol’s present, ready for assembly this afternoon. 

After a lunch involving the cake Mommy made before I even woke up, I thought I should probably get dressed. Then for the rest of my afternoon, I sat in front of the rugby while I put my crocheted creature together. I feel the same way about rugby as I do about Gardeners’ Question Time – no idea what they’re talking about, but I find it very soothing. 

Mrs. Doubtfire is on this evening, and it’s been so long since I saw it, I had forgotten how tremendously excellent it is.

The 13th of February. 

No dreams about being murdered last night, and Mommy woke up at five instead of four, so that’s progress. 

We have both had very productive days, although in rather different ways. It’s been decided that the dining room needs decorating (to be fair, we’ve lived here my whole life and only had one new carpet) and of course I am not getting involved, but Mommy has removed the paper from two of the walls. 

I have made a large doily. 

That might not sound very impressive, but it took several hours and was pretty complicated so well done me. I don’t know what I’m going to do with it. One of the pattern websites said that a doily is one of the best heirlooms to leave for your children, but seeing as I won’t be having any descendants, that’s kind of a moot point.

So, that’s been my day. Oh, I finally got an appointment with the pain team! End of March, so six more weeks of agony. Then maybe I will get some relief. 

The 6th of February. 

Late night, and I spent my morning writing about yesterday, then writing it up in a blog post. We had phoned the chiro to see if I could go on the list for any cancellations, and Sandra (the receptionist) rang to see if I wanted an appointment at three. I said yes please, very much so!

This afternoon, I spoke to the person who does appointments for the pain team, to see when I might expect mine. It turns out they only got a referral for me in December, which is the one I asked Charlie Craddock to make when I saw him in clinic. She confirmed that it was a referral from haematology, which means that Spencer Harland never even bothered. I have spent months waiting for an appointment which was never going to materialise had Charlie not got involved. It’s a twelve week wait, so I’m looking at March maybe? It should have happened in January. Fucking furious. 

Needless to say, Trine was quite shocked and appalled. She can’t do anything, but she could help sort out my angry ribcage. A serious amount of kneading and stretching was done, and she told me not to be surprised if I bruise. I don’t mind, so long as my bones stop grinding together.

The 7th of February. 

A most unproductive day. My skin is doing its occasional “have some spots in awkward places” thing and because I am blessed with good skin most of the time, this is completely unacceptable. I’m really very grateful I don’t have to go anywhere this week and worry about concealer. 

I’ve given up on the sock I was making because I got to a point where the pattern confounded me so I’ve unravelled it all. One day I will find a sock that I can make! I practised some other crochet and unravelled that too, typed a pattern up so I don’t have to get the magazine that it’s in out every time I want it, and put a recently adopted cat in the Cats Protection database. SUCH EXCITEMENT. 

My arm has actually gone up another centimetre. I now look at my left arm and think it looks almost withered when it is the normal size, it’s the right one that is insanely large. I really don’t know how much good a compression garment will do.

The 31st of January. 

Well, I’ve spoken to the person who books appointments for Andrew’s clinics, and she can’t do anything until she’s spoken to him. I don’t feel ultra-confident that she will do this very quickly but hopefully she’ll surprise me. Still no sign of deflation, and I am measuring it every day. 

I have been vastly unproductive today, apart from a blog post this morning. I was at the chiro this afternoon for the first time since before Christmas, and it was not fun, but very necessary. I know it’s bad when Trine winces upon touching my back, exclaiming about how it feels “solid”. She did lots of kneading and crunching and stretching, and I’m going back in two weeks. Hopefully I will not be in pain when I try to go to sleep tonight like I have been for the past week. 

Afterwards, we had a very quick trip to Sutton so I could get a box file for Cats Protection post-adoption forms, and while there bumped into June from Black Sheep, so had a tiny chat before she had to get back to work. 

Need to decide on my next crochet project. Mindless hooking is my meditation. 

The 1st of February.

I have been surprised! The lady I spoke to yesterday actually rang this morning – she has seen Andrew and he’d like me to go to his clinic tomorrow, which I can definitely do. Still exactly the same size. 

The rest of my day has not been so great. I needed oxygen after getting dressed, have been coughing all day, and my back still feels stiff and painful. Stupid garbage body. It would be nice to be able to complete basic tasks without feeling like I’ve just sprinted 100m. 

I had been considering a new crochet project, and as we are meeting Naomi for lunch tomorrow and it was her birthday the other day, I thought I would make her something. I had seen a pattern for a cute bunny, so I’ve spent my day making that. It is super adorable.