Archives For oxygen

The 29th of April.

Today has been so exhausting and so good.

I slept less well – super cold last night and no lung capacity to get more layers so I froze until I was too tired to care. This morning, I decided not to climb the stairs so as not to waste oxygen, so I just hung out in my bedroom until it was time for us to go out to see Tez Ilyas. He was great, as expected, i mean that’s going to be the case for every act I mention. I had to help him out at one point because the members of the audience he picked were not answering the question he asked correctly. Not paying enough attention!

He ran over slightly, so afterwards I literally just had time to grab a coffee before heading over to The Youth Wing to see Phil Wang. That was problematic, because the way I went meant I got stuck at a flight of stairs, but thankfully some very kind strangers offered to carry my chair down the steps (without me in it) and then I was back on my way. I got in and parked on the end of a row, and ended up with various members of sketch groups Pappy’s and Daphne to my right, with Tom Parry sprawled across the floor, snorting with laughter. For a work in progress, it was pretty slick, and I’ll be keeping a lookout for the finished product on tour.

I had Lolly Adefope straight after in The Canteen, so I left The Youth Wing the way I should have gone in, so I could get myself some more coffee before making my way back round to the other side of the school. On the way, I bumped into one of the women I hung out with last night, and she was going to Lolly too.

Coffee in hand, I drove down to The Canteen to join the queue. Being in the chair, I got moved to the front, which turned out to be a blessing and a curse. She was due to start at 4, but there were technical issues – there were cables that were needed and I watched people running back and forth trying to get hold of the right ones. This went on for just over an hour, and every time somebody came back, the hearts of the queue lifted, only to fall again when the doors didn’t open. I felt really bad for the guy who was checking the tickets – he knew nothing more than we did, and there wasn’t really anything he could do, I could hear people behind me getting (understandably) frustrated because this was going to impact upon their attendance of their next show, so they were having to decide who they wanted to see more. I was okay to wait, because my next show wasn’t until 7.15, and I was glad I did.

Her show is a reply to her reviews from her last show at the Fringe, in which she was criticised for not referring to her race enough and for talking about it too much. It would be like me doing a show and discussing or not discussing my disability. I have to applaud her too for her excellent singing, and for dealing with groups of people leaving towards the end of the show. Super impressed.

It ended just before six, and I was starving, having only had coffee since my crumpet at breakfast time. I got myself a smoky sausage in a bun (relatively easy to eat and no danger of spice) and ate it while watching all the fun dogs around. I even met a famous dog, Rosie, who is regularly heard on Rhod Gilbert’s Saturday morning show. She is a very good dog.

My next show, The Griefcast with Cariad Lloyd, was up stairs, but when checking the venues yesterday I’d been informed that there was a lift I could use. Today there was a worry because they had put an Out of Order sign on the door, but that was just to put able-bodied people off using it. Sneaky.

It was a small room and VERY HOT. Lots of people crammed in. The guests were Phil Wang, Kiri Pr’chard-McLean and Nish. Usually, the show is Cariad interviewing a comedian about a particular death, but today the topic was just death in general. In an amusing fashion. The last topic was “last words”, and Cariad asked them all what theirs would be. Phil missed a trick with his answer, and Cariad asked if there were any questions. I put my hand up and Nish pointed me out. I could have asked something poignant, but I had to say that surely, Phil’s last words should be “Wang out.” I saw the pun and had to say it. I don’t know if it’ll be on the podcast but I hope so. The only time I think my brain has worked that fast.

My next show wasn’t until 11.30 and also included Nish in the line up, so he met me back downstairs and the rest of the evening is a blur of faces and saying “Nice to meet you.” I did mean it each time, I just met a lot of people! We went to the bar in Y Plas where pretty much every comic at the show was.

Honestly I couldn’t tell you what we talked about, I just remember that for once, I wasn’t telling the story of my life ten thousand times, people just treated me like I as part of the gang and that pretty much never happens with people who don’t know me. It was just the most fun.

My oxygen ran out in the middle of Beat This, so I had to text Mommy and get her and Daddy to come and swap it over for a new one. I thought that might be enough to tide me over, but thinking about getting the taxi back on my own, having to deal with the chair, I just knew that it was going to be horrific. I cancelled the car, and sneaked out the side door. Knackered, but elated.

The 30th of April.

Going home early. It’s fine, we just don’t have enough oxygen for me to do another night.

We had to get into Mach earlier today, because there was a massive cycling race that started in the town and was going to close the road that we use to come in on. We got in at about eleven, and I sat in the car while Mommy and Daddy went to get coffee and some sort of breakfast pastries. I ate my co-op cinnamon swirl, then set off to Y Tabernacl for Pappy’s Flatshare Slamdown. Matthew and Ben said hi on their way in, and when the queue started to move, I went over to the lift to go up half a floor so I could enter the hall. There was a step down to the pews, so I just parked my chair at the best vantage point. Josh was a guest, and he saw me so he came over. Kiri was meant to be on the show but had yet to arrive, so other comedians were being texted en masse. Who turned up but ol’ Nishy Kumar? Kiri appeared shortly after, so we just got an extra person’s-worth of funny for free. I had a joyous time, particularly enjoying the quickfire round jingle that Tom and Ben recorded with Nish and Josie last night at Y Plas when Josie was full of Pinot Noir. I can’t wait to hear it when it goes out.

They ran over, as one has to expect, so then I had to bomb it down a rather steep hill to The Mach Arena for Josh and Friends. The wheelchair view in there was less good, but enough that I could just about see. We had stand-up from Josh, Matthew Crosby, Nish and James Acaster, then he read out some classic scrapes from his book which are all hysterical.

Upon coming out, I bumped into Amy, and we talked while Mommy and Daddy went to get food. I informed her of the racist attack Nish had just endured (Josh threw a massive ball at him but he was not injured), then they went to get lunch and we went to eat ours. We discussed oxygen levels, and we only had one full bottle left, so came to the conclusion that I only really had one more show left in me. Mommy and Daddy went back to the house to pack up, and I went to get more coffee and see who I could see before it was time for Sara Pascoe.

Happily, a lot of my lovely pals were still around, so there was Nish, Josh, Fin, Tom, a whole host of people. We whiled away the time together until everyone had to beetle off to our respective shows, and I left loving my wonderful gang.

Sara was fantastic as always, and I look forward to seeing the finished piece when she takes it on tour. I didn’t have time to hang around to see her afterwards because Daddy was coming to pick me up. We returned to the house, packed everything into the car, and we set off on the long drive home. I am so happy and I’ve had such an incredible weekend – definitely going again next year. Hopefully without any extra oxygen.

The 27th of April.

It’s been a very peculiar sort of day. Started with respiratory clinic, where I had to talk to Dr. Thompson about the bronchoscopy. Curiously, from his perspective, it went quite well. I couldn’t have more sedation because I might have stopped breathing. Apparently when I got down there I was very uptight, anxious and in control. As soon as I had the sedation, all the emotion I’d been holding back came out and actually made everything worse. He also thinks it has been made worse in my brain because I have some sort of PTSD from NG tubes. So would you if you spent six months of your life having them shoved up your nose and down your throat, then vomiting them up along with chunks of your own dead stomach tissue several times a week. Basically, my brain has fucked me up for these sorts of things.

After this chat, we moved on to how I am now. He is not majorly concerned about my cough or CRP, we just need to keep an eye on it. He did send me for a chest x-ray to see if my right lung has inflated any more and it has, so that is pleasing.

 We left the hospital and had a quick trip into town so I could get another jumper, seeing as my fat arm isn’t going anywhere any time soon.

Got home about two, so we ate lunch, then packed up all the stuff we were taking to Mach. Daddy got home from his hearing aid appointment, had his lunch, and we finally left the house about four.

We drove straight here, so it took us only two and a half hours. The house is nice, the only downside is that it has no wifi. We also have the slight issue of the fact that Mommy forgot to put the breakfast foods in the car so she and Daddy have had to go shopping. She is poorly, it’s not her fault.

The 28th of April.

I slept surprisingly well, for not being in my own bed. It’s a novelty to sleep in a single bed that isn’t a hospital one. This morning was pretty quiet, just breakfast and writing about yesterday. I think that’s how this weekend will be done, considering I’ll be out at my normal writing time.

We went into Mach at lunchtime to a) buy me some toothpaste (forgot mine; had to use Mommy’s and it was so minty and painful), b) do some recon on gig venues and c) have some lunch. Well, the only toothpaste they had at the co-op was all minty, so I got one for children that is only mild. We checked out all the venues I’m going to and they should all be fine with the wheelchair. Then lunch! There are many cafés, and we went to one called The Quarry where I had some much needed coffee and some spinach, squash and sweet potato pie. It came with an enormous salad which I was incapable of finishing but didn’t want to waste, so we got a box to take it away in.

We then returned to the house for a little bit before Daddy took me back into town for my first show, Stuart Goldsmith, at 7. I went a bit early so I could get some food (a cookie), then I wanted some wine, but the bar did not seem accessible, so I had to ask a nearby stranger. She was very obliging and came back with a large Grig in a pint mug which I think I was supposed to give back. Oh well, it’s mine now. We had a nice time chatting while we waiting for our respective gigs – she and her friend were going to see Mat Ewins and Fin Taylor, so I wonder if they managed to enjoy both shows. Unfortunately, next to where we were waiting were several fire pits, and once they were lit, my breathing was fucked, and I had to put the oxygen on for the rest of the evening.

I really enjoyed Stuart’s show, very very funny. Could not recommend him more. My next show, Marcel Lucont, was at the school, where Nish had just been doing a show, so I went down there and met up with him and his girlfriend, Amy. Together, we went down to Y Plas because I had 40 minutes to kill and on the way we bumped into many of their friends, all the names of whom I have forgotten, They were all very lovely though. At quarter to nine, I needed to get going, so Nish and Amy walked with me back there, and we said goodbye until tomorrow when I’m seeing him (unintentionally) in two different shows. 

I was one of the last people in, so I was at the back with my oxygen. I didn’t enjoy it as much as the first show, but I think that’s partially because I felt like total garbage. He was good, I just wasn’t up to it.

Mommy and Daddy were seeing Ivo Graham at the same time, so we all went home together. Hope my oxygen levels return to normal tomorrow.

The 13th of April.

Three good days is too much to ask. Well, to be fair to my lungs, I was doing okay this morning, I only started to struggle after I attempted a moisturising session. It is a good thing it’s not necessary every day.

As I’m sure you’ve grasped from that, it’s been a wild ride of a day. I spent the morning in my pyjamas, while I wrote up a blog post and argued with Justine Greening through the television. Well, more like she made a speech and I voiced my disagreement with each point she made. It was fine, no one was around to hear me.

After lunch, I had my strenuous moisturise, then I recovered with oxygen and some crochet. Despite me paying more attention, today I read the pattern wrong, so I did a whole round, started the next one and got very confused. Eventually I worked out what I’d done, unravelled it, then put it away. Too much today. Anyway, then we decided to watch a film that was in Danish so I can’t crochet and read subtitles at the same time.

It looks like might have a family for Spike. It’s their first cat and he is an ideal candidate – he is probably the most affectionate cat we’ve had and he’s such a good boy. I don’t want him to go!

The 14th of April.

Back to quite reasonable breathing today. And my eye has been fairly well-behaved as well! Lucky me.

This morning I had the lovely surprise of coming across Matilda on tv. This was rather fortunate as Good Friday television is appalling – instead of Victoria Derbyshire, there was some sort of Tinkerbell pirate film on. Not ideal.

Most of my day has been spent crocheting, and I haven’t had to unravel any today! Not much left to do on this one so hopefully I’ll finish it this weekend, then I can start work on whatever I decide to make for Jenny’s baby.

I had a tiny chat with Christine when she was on her way home from the airport, because Mommy hadn’t answered her phone. However, we had just really got talking when Mommy called her back so she ended our call. Obviously I am not interesting enough.

And Trump is trying to start World War 3 with North Korea. Two baby men battling with their egos. We’re fucked.

Orlando the Manatee.

I made this months ago, but didn’t want to put up a photo until I knew he’d arrived at his destination.

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 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.