Archives For pain

The 6th of June. 

Today has been pretty lame, ranked in terms of holiday fun time. The weather was not terrible, so it was felt we should go out. I was woken up by a child playing basketball outside my window which was not ideal, but I refrained from putting a passive-aggressive note through the door of the owners of said basketball hoop. If it happens again tomorrow, I will be less accommodating. 

Daddy and Christine wanted to go to a castle, which did not sound appealing, so they dropped Mommy and I off in Torquay so we could do a bit of shopping while they looked at the ruins. We spent about an hour and a half in a nice coffee shop, having a tasty lunch and beverages. I had a mozzarella, tomato and pesto bagel with a carrot and orange juice, although I took the tomatoes out. Don’t want those. Then I had a coffee and we shared some vegan chocolate banana bread which was excellent, but it was demolished before I had a chance to take a photo. We were thinking about going, but then an old man sat down and started talking to us, starting with the premise of the election but he actually ended up telling us about how he is having to move because his landlady’s husband is a weed addict and he wants to start a singing group in which they sing old French songs in a Black Country accent because he thinks it would be fun. All this while eating two croissants with butter and jam. He was a curious fellow. We did have to leave as we had a jigsaw to buy, so we went in search of that. It turns out Torquay is quite shit in terms of shopping. We tried several places, and finally found one in WHSmith, where I also found a Father’s Day card. Not got Daddy a birthday card yet but nevermind. 

My eyes started being problematic, and we had nowhere else left to go, so we started trawling places in desperation, waiting to be picked up. We even went round Wilko’s, where they were selling my facewipes for more expensive than in Superdrug, shockingly. 

I was very happy to see the car arrive so I could shelter from all the bright light. Honestly, if it gets even vaguely sunny, I am essentially blind. Really hoping it is kind of dull on Thursday when we go to Michael Caines’ restaurant. 

Back at the house, I made my contribution to the jigsaw by finding all the bits of the two windows in the picture. That was enough for my back, so I then returned to the sofa where I have been curled up ever since. 

 

The 7th of June. 

One day out in the wheelchair/car and I am fucked for the next one. Been hobbling all day. Nevermind the fact that Mommy fried some meat last night and I obviously can’t cope with being in the vicinity of that either because my sats are only just getting back to normal. People are only allowed to bake, roast, boil or steam things near me, thank you. 

I was not woken by basketball today, thankfully. Instead, it has been a very quiet day – Daddy and Christine went to the tiny zoo this morning, while Mommy and I stayed in. She cross-stitched, I crocheted! Actually was able to focus on it. I had to unravel the doily I had been working on, because I can’t remember what size hook I was using, but I’ve started a new one and I’ve made a note of the hook, so if I have to stop again, I won’t have the same problem. 

When Christine and Daddy got back, we ate lunch while watching today’s Pretty Little Liars (FINALLY things actually progressed) and I had a very tasty crab sandwich from one of the nearby coffee shops. I was then left alone while everyone went shopping to buy dinner, so I watched an episode of Scream and before I knew it, they were back again! Time for iZombie. (Yes it seems on holiday I behave exactly as I do in hospital.)

It is the last day of election campaigning. Tomorrow, the people vote. Obviously, I have already sent off my postal vote. Part of me is hopeful. The other part is terrified. I am so afraid of what I might wake up to on Friday morning. 

The 31st of May.

My own bed is a beautiful place. I had such a nice sleep. 

It has been a busy first day back in the real world! This morning we had to take Sam to the vet for his first set of vaccinations, then they were running so late that we only just had time to take him home before going back out to the chiro. Trine was not impressed to hear I’d been back in hospital for essentially the entire time since I saw her last. Today parts of my back that I didn’t even know were hurting needed working on. Such a mess. 

We came home, had lunch, then I had to get information off Catalog to fill in a form about Sam because I didn’t have an ID sheet for him. His adopter was coming about half past two, so when I finished at two, I went to sit with Sam to say goodbye. He just wanted to sit on me, as always, and we watched the new Pretty Little Liars until the doorbell rang. 

Well, they were instantly smitten. I was not surprised because he is lovely and there was no reason for them to not want him. He even stuck his tongue out, just to be extra cute. They were gone within the hour. I’m expecting a photo of him on one of their laps this evening. 

Once they had left, I returned to the living room and watched new iZombie while doing Cats Protection admin. So exciting. Then this evening, Mommy and I (and my oxygen cylinder) are off to The REP to see some comedy to raise money for refugees. Nish, Joe and Tez are all on but I will not be hanging out because I am still a bit wrecked. Hoping they are all on in the first half because then I can go home. 

 

The 1st of June. 

How is it June so soon? I have written off this year already. For the whole of it, I have been sick and swollen and in pain. I need the next seven months to be better. 

Lots of little jobs to do today. Sorted out all the chargers and power packs to take on holiday, and put my iPod and old iPhone on to charge so I will have all the things to listen to in the car tomorrow. I spent my morning having a mini Agents of S.H.I.E.L.D marathon and putting all the posts I have written over the past three weeks up on my blog. Glad to finally be back up to date, although I need to write them all down in my hand written diary so they match. I still haven’t done the ones from March. 

During our lunch, we watched the Bake Off Creme de la Creme final, and the military men won! We were very pleased as they were our favourites. Then we went upstairs to wash my hair and sort out my clothes that I’m taking away. It is not going to be particularly warm, so it will be a week of jeans and jumpers/cardigans. 

Back downstairs, I painted my nails, but had to get Mommy to do my toes because I cannot see the outline of them clearly. I don’t understand why my eyes are getting worse again when the treatment seemed to be working. It’s not just that stuff is blurry, I’m really photosensitive and it hurts 90% of the time. At least my breathing is improving a bit – I’m only in 0.5 litres of oxygen now so I might be able to do most of the wedding without a tank at my feet. 

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 5th of May.

More trips out today. Busy busy.

When I woke up, I was struggling, because the oxygen cylinder upstairs had run out. However, things have improved since then. It is always worst in the mornings and evenings. After breakfast, I watched the new episode of Riverdale, and (no spoilers) SO. MANY. REVELATIONS. Also I am sick to death of Veronica Lodge always bringing it back to her and her dad. Do not care, shut up.

I had an appointment at the GP at quarter past one to discuss pain relief. The buprenorphine is making absolutely zero difference to my pain, and she seemed quite surprised to hear this. The next step is to try pregablin instead, so I’ll start that tonight. Fingers crossed it doesn’t affect my breathing.

We came home for about an hour, then we were back out to the dental hospital, just for a check up. They were running late, so I got a lot of The Burial Hour read while we waited. I got called by a young dentist called Joseph who looked about twelve, but was very competent. He looked at my mouth to see if there were any signs of GvHD while another dentist scribed, then we just had to wait for their senior colleague to check I was fine. He was with another patient, and while we sat, we got onto the subject of Netflix, and the girl who’d been writing watches Pretty Little Liars and Riverdale too, and they both watched 13 Reasons Why, so we were in no rush for him to arrive.

Dr. Khan finally came, and thinks my mouth looks the best he’s ever seen it, so they don’t want me back for four months.

As soon as we left, I reopened my book as I was at a critical point, and now it is finished. Oh, Jeffery. Clever, clever Jeffery.

The 6th of May.

Do not like this new pain drug, pregablin. So far it is not making my back feel any better, it has just made me really sleepy all day. Not exactly tired, but my eyes just want to close. It’s not ideal. I’m going to continue with it for a few days, see if the sleepiness wears off and the pain gets any better. I’m not optimistic but I have to give it a chance.

My day has been a really rather dull one, for the most part – I have been sitting with the laptop, typing up the blog entries that I have got behind on posting. There were six to do I got three done. They’re still not posted because I need to add photos and I do that on my iPad. It is very boring but it must be done.

I had a couple of breaks in which I went to sit with Sam and we were both sleepy. He is such a good boy that if nobody wants to adopt him, I will beg Daddy to let us keep him. He won’t live that long, won’t cost us a huge amount of money.

This evening I went out with Sadie to see Joel Dommett. She is a bit in love with him and asked if I’d go so I agreed – although I’ve already seen his show, I was interested to see how he would make the show work, going from a 90 seat room to an 1800 seat one. When we arrived, I saw JT, and we had a little catch up, then he had a look at our tickets and asked if we wanted to go in the wheelchair space instead. Considering they were better seats and I didn’t have to move, I was only too keen to say yes.

The show has definitely improved since October, and I think it actually works better in the larger space. I’d completely forgotten about Laser Dick, but by the second chorus I was singing along again. And he’s changed the ending, which I won’t spoil, but it’s definitely more suitable for the bigger venues he’s doing. He’s not coasting on the fame he’s got from I’m A Celebrity; he’s worked really hard and it’s paying off.

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.