Archives For oxygen

The 30th of June.

I hate writing about holidays because usually so much of it is “We did this. We did that.” And it is not interesting to read.

I didn’t have a good sleep because the floors of upstairs are really creaky and loud, so if someone moved, I heard it. The plumbing is also really noisy, as are all the birds. Plus, the bed is not super comfortable.

This morning, we had a trip to Leiston to go to a wool shop, because I forgot to bring the wool I need to assemble the blanket. I did some Googling and that was the nearest place. They actually had exactly what I wanted, then I ended up having quite a long chat with the shop owner because she was on oxygen and she had a compressor which is something I haven’t tried but will probably need in future.

Then we went to Snape for lunch, and ate in this café situated in a large homeware shop. Three of us had the fish platter, and Daddy had a vegetarian breakfast. The fish was lovely and there was plenty of it, but the bread was dry. In the shop, there were loads of expensive mugs I wanted to buy but didn’t (£21? Fuck off) and nice furniture, but all I purchased was some coffee.

Back in Aldeburgh, I got some disappointing gelato, saw a lot of good dogs, then came home to start putting the blanket together.

The 1st of July.

Fuck, my back hurts so much this evening. Maybe it’s my fault for sitting and crocheting all day. Or the sofa’s fault for being unsupportive. Today is my first day of what should be an effective dose of CBD capsules so maybe soon I will feel some difference. I really fucking hope so.

I had a better sleep now I have earplugs, so that’s been a plus for today. To be honest, I’ve only moved from my crocheting spot to eat lunch and go to the ice cream shop. A different one to yesterday, and much better. I will go there again. I’ll also try coffee from there because all the coffee I’ve tried so far has been poor.

That’s it! I’m being industrious because I want to get this blanket done, then I don’t have to worry about it. I want to get it done while we’re here because I don’t think I’ll be up to it after my lipo.

The 20th of June.

I stayed up a bit late for me last night to watch the live stream of Death Cab from Scala. I couldn’t go, and they’re not coming here on their tour, so that was my only opportunity. I’m quite glad I wasn’t there, because it was apparently disgustingly hot. I just love to watch Ben Gibbard dance. It makes me a bit sad too, because the thing I miss most about being able-bodied is being to sing and dance at the same time. So much.

Today, I was up early for oxygen clinic, which is usually very straightforward. We didn’t get off to a great start, because someone annoyed Mommy in the car park, so she decided to follow them, then we were about to park in a space when a woman decided she was going to try and swing into it, going against the one way system. We were not having this, so honked the horn at her loads and shouted at her through the window that this was not allowed and she had to reverse. Really don’t know where this burst of rage came from, but it was very funny.

Clinic itself was fine! Apart from the machine not working the first time so the nurse had to stab my ear twice. But my blood gas was better than last year! Not really surprising when at my last appointment I was still recovering from pneumonia/fungal infection but still, it’s pleasing.

This afternoon, I have made hexagons. I have completed the first set of nineteen! And I got Dolly to come out for a treat stick and she stayed out. Progress!

The 21st of June.

Well I had every intention of going to the gym when I got up this morning, but unfortunately we’ve had no cars so that idea was quickly shelved. Mommy’s car was going into the garage to be fixed after she scraped it along the wall, but then Daddy’s had to go in as well for some valve/charcoal problem that arose yesterday. Therefore, no cars, no gym.

This morning, I spoke to the train assistance people because I accidentally booked it twice for the same journey, so I cancelled the one in which they’d put me in coach A because I hate that space. Then I rang the Reservations Team at The Spire, so I’m seeing the lymphoedema nurse of Tuesday to fit me for my post-op sleeve, then having my pre-op assessment on Wednesday. I can’t believe it’s going to happen soon. I know it might seem trivial, but I have lived with an arm that is 37% bigger than the other for a year and a half, just as I’d actually developed a pretty healthy relationship with my body. There’s so much about myself that I can’t change and don’t have a choice about learning to live with, but I can fix this, and I’m going to.

After lunch: hexagons. Attempted to touch Dolly which made her jump and she’s spent that afternoon on top of the china cabinet, way out of reach. Maybe I was being optimistic.

The 8th of June.

All the kittens are gone!

Had a slightly stressful but then great start to the day. Janelle Monae is playing The Roundhouse in September and tickets went on sale at 9am. Christine and I both wanted to go, so she was going to book, but was having trouble. I immediately got on the phone and remarkably got through to someone very quickly. I asked about booking an accessible seat with a companion, and it seemed like she couldn’t sell me one, as if they weren’t available. I was not on board with this, so got her to inquire further. She went to talk to the ticketing people, and when she returned, a seat was miraculously available! So now Christine and I are going to scream our lungs out to Americans in September. So excited!

Rest of the day has been kitty paperwork and adoptions. Dot went first, about half two, amazingly without too much fuss. I have been sent photos of her on the sofa of her new home already. Then Dusty and Daphne have just left, off to an enormous cat tree, such I am sure they will absolutely love.

I just hope Dolly isn’t too sad now.

The 9th of June.

Today just seemed to get away from me.

This morning, I got up and dressed for the gym, because nothing was particularly painful. Well, no more than usual. I ended up having my breakfast a little late, and then by the time I’d finished my coffee it was eleven o’clock and I don’t know how that happened.

I did a little bit of crochet before lunch, which we ate while watching Trooping the Colour. It always reminds me of “Be Prepared” from The Lion King, when all the hyenas march past Scar and salute.

The gym was hard today. I had a really scary moment after my second set of squats, which is the first thing I do. I normally do sets of eight, which take my heart rate up to about 158. Two minutes of recovery, start again. I thought I’d try to do nine, and it was just one squat too many. I wouldn’t say I had a panic attack, but I think briefly I knew how one feels. I was frighteningly breathless, and my mind started racing with bad possibilities. My breath not coming back, or having to move, or what if I need oxygen I don’t have any oxygen. I don’t think I can put into words the terror that spreads through me when I am shaking, doubled over, squeezing whatever is in my hands, trying to concentrate only on breathing, not hyperventilating. I started to think I was going to have to text someone to come and get me, because I couldn’t see myself carrying on today, definitely not climbing the stairs. But the breathing came back, and I talked myself down, giving myself time before starting the next set and I got to the end of my routine. Climbed the stairs. Just have to breathe.

 

The 28th of September. 

Nobody has more phlegm than me. My throat seems okay now, not really needing the Strepsils. I just cough a lot, and it is my signature cough that I have to do continously until the junk moves. Sometimes it takes a while, and I get a bit lightheaded. The ribs are coping today, I am just really tired. Praying it calms down by Sunday. 

This morning, I woke up early, and did a blog post, and coughed. Just coughed, up until about half eleven, when I finally seemed to get some rest, so then I got Simon’s hat out and started work on that again. 

After lunch, a couple came to view the kittens. I don’t think we’d been in the room even five minutes when Amanda said she was smitten. Not surprising – Harvey just wants to be pals with everyone immediately and Hugo is gorgeous, if less forthcoming. He became a bit more interested once we started playing and they were able to see what he’s like when he’s relaxed. 

They stayed about an hour, and left definitely wanting them. They can’t pick them up until next weekend but that’s fine because it means I get another week of petting. 

The rest of my afternoon was spent finishing Simon. I’ve still got Heinz the Stag to do, but I must do Chloe’s seal first. 

The 29th of September. 

I have a headache, I suspect from lack of oxygen during all the coughing – I checked my sats while I was having a fit and they went down to 92, and my heart rate went up to 140. It’s not great. 

I had a more reasonable sleep – my alarm actually woke me up today which is the first time in a while. We’ll see if that happens again or if it was a fluke. 

This morning, once I’d got through all the morning phlegm, I started crocheting Chloe’s seal. So far, he has a face. It’s going well. 

After lunch, Mommy and I went into town for toy stuffing, returning of Zara jumpers, and to purchase some baked goods from this place called Medicine Bakery which is only open on Fridays and Saturdays. Sadie went when she was home the other week and she approved. I bought a Nutella and s’mores kruffin, plus a cinnamon bun and a blondie. 

OH GOD SO PHLEGMY. 

img_0076

img_0075

hipstamaticphoto-528392006.124904

The 20th of June. 

It has been slightly less hot today. It didn’t feel like it this morning – I had to get changed after going upstairs to put on minimal make up because I was so sweaty. It was very unpleasant. 

I was meeting Sadie for waffles at one, so Mommy dropped me off in the Bullring car park and I went up in the lift to Selfridges so I didn’t have to deal with any blinding sunlight. I was early, as always, so I got a table and waited for her while perusing the menu. We decided we would have just waffles, no room for milkshakes too. I went for the Seriously Cinnamon, but without all the whipped cream and stuff they normally put on top. Just cinnamon and syrup for me please. 

I got to hear all about the debacle of her stolen phone, her dealings with the book eater (Matthew Goodwin, her PhD supervisor), and she got to squeeze my fat fluidy arm. A fair trade. Still no venoplasty date, by the way. Once we’d eaten and paid (neither of us could finish our plates), we moved to Starbucks for cold beverages and comfier chairs. Amazingly, sofas became available just as we ordered our drinks! How fortuitous. While there, we saw two children riding around the toy section of Selfridges on these houses that move around like real ones. They’re incredible and I want one. 

Back home, I managed to get the kittens to play a little bit. They will play with me, as long as I don’t make any sudden movements. Sigh. 

The 21st of June. 

Today has been the hottest. And I had to go outside. Bleah. Oxygen clinic at ten, where we saw Ben, who was very happy to see me without tubing on my face and looking much brighter. He also wanted to know what was going on with my venoplasty/PICC, and when we told him that nothing has happened, he said he would email Andrew to try to speed things up. 

Had a slightly longer appointment with the oxygen nurse, just because I had to explain everything about the pneumonia and my stays in during the past six months. She stabbed me in the ear and my oxygen levels were a bit lower than last year but that is only to be expected and they weren’t terrible.

Went into town before going home, where I bought three books (Why I’m No Longer Talking to White People About Race by Reni Eddo-Lodge, The Power by Naomi Alderman and We Should All Be Feminists by Chimamanda Ngozi Adichie), an eyeliner and mascara from Boots, and a fan brush from The Body Shop. The lady who served me had to go and find one from the stock room, and came back with several which she put on the counter. I paid, and she brought my receipt and change round the counter to give to me, but not the brush. I assumed she had just forgotten to pick it up so asked for one and she thought she’d given it to me but I didn’t, so she handed it over. Then we went to Starbucks so I could get an espresso frappuccino. While I was waiting, I happened to look in my bag and saw a brush, which confused me because I was sure I’d put it in the Foyles bag with the books. I checked, and there was a brush in there too! I had no idea how the one in my handbag got there, so I got my drink and we went back to The Body Shop. I went up to the counter, where the lady was, and handed her the extra brush, apologising for my accidental thievery. She was very surprised me but congratulated me on my honesty. Sure I could have kept it, but what would I do with two? Seriously no clue what happened. 

This afternoon, I think I made some progress with Betsy and Brodie – we played games with my fingers. They don’t immediately run away from me now. 

I had an appointment with Trine at the chiro at half four, and it was much better than last time. No hospital bed makes such a difference!

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.