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 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 1st of April. 

I have a kitty! His name is Spike (although we think he looks like a Samuel), he is six months old-ish, and he is a very pretty tabby. Shaki brought him round this afternoon and he’s going to be in the cage for a couple of days until he gets used to us, but he’s been happy for me to stroke him and he has done lots of purrs so I think he will settle in pretty quickly. 

I have not felt too bad after my outing last night, and this morning we went over to Kings Heath to get some cake from the Bake guys. I saw they’d made a chocolate churro bundt cake and I simply had to have some. I also got Brooklyn Blackout Baby Bundt, a cookie dough brownie and a creme egg brownie.

Back home, I ate lunch (including my slice of churro deliciousness), then waited for Shaki to arrive. When Spike was comfy in his bed, I explained a bit more (to Shaki, not Spike) about the pneumonia, and we talked about my current volunteering capacity. When she left, I stayed in the room so Spike didn’t feel abandoned and he was very happy to be petted and have his tummy tickled. Gonna have a new friend!

The 2nd of April. 

Really, ever so tired. Spent my morning in my dressing gown because I hadn’t got the energy to open my drawers and find clothes. When I did finally get dressed, it was hard to muster up the impetus to go back downstairs. Moving is such an effort. However, I did manage to go and see the new kitty a few times. He’s still skittish but as soon as the food comes out, so does he. I was even able to pick him up and we had a hug, but he got distracted by Daddy in the garden so I had to put him back in the cage before he escaped. But I gave him some more strokes so he knew he was a good boy. 

Thank god SyFy are doing Buffy marathons to celebrate twenty years because it has made for such a nostalgic soundtrack to my afternoon. I fondly remember watching it on BBC2 at 6 o’clock every weeknight with Christine, and being so mad when it moved to Sky. 

During the Buffy, there has been crochet. Recovery does not make for interesting reading. 

The 30th of March. 

Fairly acceptable breathing today. I’m on 0.5 litres of oxygen. Normal air is not quite oxygenated enough for me. 

I at least had a better sleep, and this morning I got a blog post done and not much else. I had another appointment (which I had entirely forgotten about) at the Women’s at half past one, so we ate our lunches and got on our way. Thankfully no hellish traffic jams today, but there was nowhere to park so Mommy pulled over, I drove off in my chair with the oxygen on the back and she found somewhere to put the car. 

I was seeing Miss Byrom for a follow-up after the procedure I had in November, and Sue, the sexual health nurse, was there too. I said that I thought it had been successful, but only up to a point. She examined me, using a very small speculum and a very long swab, and it turns out part of me has sealed up again. JOY. It’s to do with a thing I have called lichen planus and it’s just another stupid thing that I have that has no cause. I have to carry on with the dilators, and she’s going to talk to a plastic surgeon about me to see if he has any ideas. 

Too many things wrong with me right now. I feel like a collection of conditions rather than a human woman. 

The 31st of March. 

Today was the most normal I have felt in a while. My sats were good enough for me to not need extra oxygen for most of the day. I’m on it now, but still, it’s been a good day. 

This morning, I didn’t fancy watching Eamonn and Ruth be unbearable, so I caught up on The Magicians and did some mindless crocheting. After this project, I really need to make something for nurse Jenny’s baby and for James. I also had issues with Vue and their stupid website trying to book tickets for Ghost in the Shell. 

It’s an odd sort of film. I kind of get the premise and I found it interesting, but I didn’t really see the point. Having done some research, I think it’s too large a story and world to cram into a 100 minute film. One thing I did like was the choice Scarlett Johansson made to lead her walk with her head. It was curious because the company in the film go to so much effort to make Major appear human, but her walk was so unwomanly. Hm. 

Tonight I am going out to The Glee to see Fin Taylor and Mat Ewins, but there is no way I am climbing the stairs, so I’m going in the chair and have arranged for someone to let me up in the lift. Then tomorrow I will feel terrible, I suspect. 

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.