Archives For tired

The 5th of November. 

I hate Bonfire Night. I hate fireworks and bonfires. The brightness hurts my eyes and the smoke hurts my lungs. I hate them because I can’t enjoy them like a normal person and I am bitter about it. At least now they might stop until New Year. 

Did a blog post this morning, no great excitement there. I could hear Mommy upstairs in my bedroom, hoovering, and it made me think about all the stuff she does that I can’t and how I’ll cope if it gets to a point where she isn’t able to do those things. Hoovering, dusting, making my bed. I don’t like thinking that far ahead. But the only way for that scenario to be avoided is for one of us to not be alive and I am not a fan of that idea. In fact, I can’t bear it. Hence avoiding the future. 

Well, that was bleak. This afternoon, a lady called Tracey came with her partner to view Chester. He’s nowhere near ready to go and she knows that, but they got to meet and she could see if he was suitable. We think he will be – he’s going to be a friend for a sad dog. They left after about an hour, having provisionally agreed a date for adoption, which works for all of us because it means Christine will get to meet him too. 

The 6th of November. 

I was wrong about the fireworks. People are still doing it this evening, presumably because they are awful. Bah. And I woke up in a weird mood because I had the same dream about being a serial killer three times from different perspectives. 

So I’m tired. Physically, mentally. My muscles hurt from getting up from sitting on the floor with the kittens so every time I stand up I groan. Most of my day has been spent working on the last gnome, the biggest one. All his parts are now finished, so I’ll assemble him tomorrow. 

I had to ring the GP because they’d called on Friday about a letter from the dental hospital. When I did, the receptionist said it was a secretary who’d phoned but she doesn’t work on Mondays so I have to ring back tomorrow. Why a random secretary from the GP is ringing, I don’t know. 

I’m really not looking forward to my lung function tests on Thursday. I know the results are going to be shit and I really don’t feel like hearing for definite that the pneumonia and collapsed lung have resulted in permanent damage. 

 

 

The 6th of October. 

Last night was bad again. Don’t think I fell asleep at all until past two, and even then it was punctuated by coughs. Blog posts take so much longer when I’m coughing. Keep having to stop and hunch over to move some phlegm. Spent most of the day without my cardigan on because I’ve been so warm. 

My chest has rumbled all afternoon. Rumble, cough, rumble, cough. I can barely write because I have to keep stopping. This morning I was quieter and I thought things might be starting to slightly improve but that seems incorrect. 

Daddy is concerned that I’ve got something fungal, so if there’s time on Wednesday he’d like me to get my bloods done (I don’t know how this is supposed to fit in with my lymphoscintigram). Personally I think it’s still just a virus but getting them checked will make him feel better. 

What would make me feel better would be for the coughing to improve. Or at least decrease in frequency. I’m so exhausted. 

The 7th of October. 

Sleep not terrible but not good. I’m so tired. And my back hurts so much. When I get up to walk, I am bent over at a thirty degree angle. Straightening up is too painful. 

Most of my day has been spent leaning forward, working on something I’m crocheting for Heidi. It is going to be rather larger than I had originally anticipated. I hope she doesn’t mind. 

I’m not sure there’s anything else to say. I feel like trash. It’s been two weeks now. Can I start getting better soon please? It’s been so long since I had a normal virus, I’ve forgotten how long they last. Some improvement next week would be nice. I really hope it can’t get worse. 

The 22nd of September. 

Hallo darling, 

It has been three weeks now, since you left us. I am recovering from my most hectic few days in a long time, which culminated in saying goodbye to you. It was a lengthy drive, and you would have told me not to come, that you didn’t warrant that kind of effort. You never could fathom how much you were loved. But I had to be there. I couldn’t let the last time I saw you be the last time we were together. 

This was never a place we were supposed to be. Everyone knows I’ve been to a lot of funerals. However, they are not the funerals of friends. I have said goodbye to many people, but they have most often been children, which is not to say I didn’t love them and was not devastated, but I did not connect with them the way I did with you. I am not only grieving over losing you, but all the years I saw ahead with you too. We have not just had a friend ripped away, but a lifetime. We were supposed to drink coffee and eat cinnamon buns together. I wanted you to see the end of the saga of my swollen arm. I wanted to see you with the hair I know you were so desperate to grow back.

Adam said it most succinctly, with his string of expletives during his speech. Fuck cancer. There is a part of me that has to slightly contradict him though. It’s the worst, most selfish part of me, but I think you would understand. It’s saying thank you, cancer. I wish to infinity and back that it had ended differently, but if I hadn’t been ill ten years ago, there might not have been any reason for us to develop the bond we did. I know that we shared things that you could not speak to anyone else about, and I hope you were able to find comfort in me. 

You were, quite honestly, one of the best people I have ever known. I have no other way to put it. Only someone quite so phenomenal could inspire the love that has poured out since your departure, and it was an honour to call myself your friend. I am so proud of everything you achieved, and what will be done in your name. Only you could have appeared in such flamboyant form, a rainbow on a clear day. Thank you for being here. For all of it. I love you. 

The 23rd of September. 

Oh god I am so tired. All I want is my bed. I had to be awake at seven to be at hospital for my nine o’clock eye appointment and finally the past week has caught up with me. 

I saw Carmel, the lovely nurse, and she checked my vision and my pressures, and I could read more letters than last time. Then Dr. Barry called me in, and checked out my eyes. He has changed some of the eye drops, and whipped out some of the lashes in my left lower lid. I made some comment about how there’s not much we can do about them, and he said actually there is! So I’m going to have electrolysis, which involves having local anaesthetic in the eyelid, then a hot probe put in the root and it kills the troublesome lashes. 

Back at home, we were just about to have lunch, when Jill from Black Sheep called, because Michaela’s half one client had cancelled or moved, so could I come in early? That was fine, so I ate my lunch (including my chocolate crodough, which was still good even after two days) and we went into Sutton. Just a bit of a chop, so I was only there about an hour, swapping baby photos and stories. 

Since getting back, I have just flooped. Had some hugs from the kittens, who have clearly missed me. Henrietta less so. I have tried stroking her with the roller a bit but she continually flinched and I felt bad so I stopped. Now bed please. When Strictly finishes I am off. 

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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 1st of May.

I feel like crap. I think I might have caught what Mommy had.

I had a better night in my nice, warm, double bed, but I am still exhausted. Need a few more sleeps before I catch up.

My intention for today was to write about the weekend and maybe even blog about it, but the reality has been sitting in the armchair (which feels just divine compared to my wheelchair/the car) and watching tv we recorded. Trying not to cough which is difficult because my throat is all scratchy. I had a honey and lemon but it was not particularly helpful.

Ohhh I don’t want to be ill again. Especially if it’s a common virus because they always make me feel like shit and last so much longer than they should, the bastards. Going to have some Strepsils and an early night.

The 2nd of May.

Trying to work out if I am ill or just tired from the weekend. I really hope it’s the latter. My sats have been up and down, and I have this dry cough that is hard to alleviate. Strepsils have not been much good.

I have been quite pathetic all day, curled up in my most comfortable clothes. Soft jumper and jogging bottoms. Still a big jumper because my arm is still the same size, so we rang Andrew’s secretary this morning. I need to be in his clinic on Thursday. John and Maddie’s wedding is in a month and I don’t fancy looking like a freak. The thing is, I don’t know what else can be done.

This afternoon, I finally got round to finishing writing about Saturday. I have yet to do Sunday. It took a couple of hours, but that was because I was half-watching recorded programmes at the same time. It’s going to be a long post when it comes.

Mommy went to pick up Sam from Lee’s, so I’ve been in to sit with him for a while too, and have been floofed on. He’s settled right back in.

UGH my body is fucked.

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 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.