It’s now been ten days of not having a full nights sleep thanks to cluster headaches. I have not slept more than 3 hours straight in that entire time. My earlier optimism about still having some kind of life during an episode is getting harder to hold onto, mostly because I’m so exhausted that even basic things feel physically and mentally difficult.
The tiredness on top of tiredness has really caught up with me. My mood has dipped, my joints are flaring (they always do when I don’t sleep properly), and just to add literal salt to the wound, my cluster eye feels permanently inflamed. It’s like I rubbed my hands in chillies, then my eye, and then somehow got salt in there too. Lovely.
Still, despite the pain, fatigue, and looking like I’ve been crying for 3 days straight, good and chaotic things have still continued to happen this week.
Starbucks and Minecraft Pigs
On Thursday, my son and I went into town for Starbucks and a bit of window shopping. We’d originally planned to go to Cardiff, but I knew I couldn’t manage it. I’d been woken up multiple times in the night by cluster headaches, and then woken up early – when I finally did get to sleep – by workmen hammering on the scaffolding outside my bedroom window. My hip was also screaming at me. I was absolutely exhausted.
I still wanted to get out of the house though, especially as it was too loud to even consider catching up on sleep. I just wanted to get away from it all, and I thought moving around might help my hip, since it always gets worse if I stay still. So we went into town instead.
I felt terrible about cancelling Cardiff. My mood had dipped, and I found myself getting really mad at myself for it. I felt like I was letting my son down by having to cancel plans because I’m such a mess. That’s actually how I noticed my mood had dropped – usually I’m impressed I’ve managed to do anything at all during a cluster episode.
I felt really out of it though, and I still do now writing this. One of the hardest parts about this episode is how out of it I feel. I’m sure I’ve been more “fine” in other cluster episodes, but this one feels different. The groggy, confused, not quite present feeling is really intense. It’s like I’ve just woken up suddenly from a deep sleep and never fully caught up with being awake. It’s bad enough that it’s affecting basic thinking – I get confused and can’t remember anything at all. This becomes very relevant later in the post.
Anyway, I was hoping getting outside might wake me up a bit. I also thought I could treat myself to something small, maybe a bit of retail therapy would help. But after looking around the shops, I didn’t find anything I really wanted. I did, however, buy my son a Minecraft pig model building set. For myself, I decided I’d rather spend the money on more burrito ingredients, since I’ve been really enjoying them.
After shopping, we stopped at Starbucks. By then I was starting to get a really nasty shadow headache from the exertion, so I was really looking forward to an iced Americano – but they’d run out of ice. So I had to have a hot one instead.
This cluster episode has spawned way more attacks than usual because I’ve noticed my perimenopause hot flushes can trigger attacks. Hot drinks make the flushes so much worse, which then stops the caffeine from helping with the pain. My hot flushes ramped up around November last year – they used to only happen during hormonal peaks, but now they’re all month, along with night sweats.
The Americano was somehow still nice, though. I did enjoy spending time with my son, who was happy with his pig model. He wasn’t feeling great either, so we were just… sad and not well together.
The trip completely exhausted me. I couldn’t do anything for the rest of the night, and when the cluster attacks started again, I felt absolutely drained – like all the fight had been knocked out of me and I just wanted it to be over. I didn’t want to get through another night of it.
But somehow, even like that – exhausted and worn down – I still got through the pain.
The Rolls Royce of Shopping Trolleys
My shopping trolley turned up on Wednesday, and my son helped me put it together. It was a lot larger than it looked on Amazon. I took it for a spin when we went to Starbucks, and it was much easier on my joints to push. It does feel like it should come with suspension though, to deal with the crooked, uneven paving slabs in Wales. My arms were vibrating so much going over those. Maybe I need to pimp my ride.
I’ve been thinking about covering it in stickers or patches – NASA logos and the like. But initially, I felt really quite anxious about even taking it outside. It already feels like it draws attention, and I don’t like being perceived in a crowd. I prefer to blend in like an NPC in a video game – just another face in the moving crowd that nobody remembers.
My son and I noticed straight away how much easier it was to load shopping into it. I used to use a suitcase, which meant unzipping it, squatting to put things in, playing grocery Tetris to make it all fit. Now it’s just open the lid and throw things in. It’s so big it doesn’t even need organising.
After Starbucks I got really hot and flushy, so I loved that I could just throw my bulky coat in there and still have loads of space left for shopping. There was even room to put our plush pigeons on top – pushing them around like they’re my babies.
Despite the anxiety it still gives me, I’m so glad I bought it. It’s going to make doing a week’s worth of grocery shopping so much easier on my joints. I love that I live within walking distance of everything I need, but it does create a very specific problem:
How do I carry everything home when I only have two hands and my joints are already complaining?
The Borderlands Movie
One night, I really wanted to blog or play The Long Dark, but I was far too exhausted to do either. I did try – both of them – but my brain just refused to cooperate. I was completely wiped. Hence my drop in posts again. All I could manage was lying on the sofa with a blanket.
So instead, I went looking for something for my son and I to watch. There has been nothing to watch lately, and that hasn’t helped at all. Usually, when a cluster episode starts, I begin a long TV series and tell myself:
“By the time I finish these episodes, the cluster episode will be over.”
And as I get further into it, that hope builds – because the episodes are ending, so surely the headaches will too.
But this time, I felt like I’d already watched everything I love too many times, and I didn’t want to revisit any of it. So I went vault hunting on Netflix… and somehow managed to open Pandora’s vault, because the Borderlands movie was there. Despite being a huge fan of Borderlands 2 – my Maya the Siren had every legendary, pearlescent, and unique weapon – I had no idea a film even existed.
I wasn’t expecting much. Video game adaptations can be… questionable. But I absolutely loved it. The attention to detail was brilliant, and Lilith, played by Cate Blanchett, was outstanding. The way the characters moved – the walking, the shooting, even the poses – felt just like their game counterparts. She was instantly recognisable as Lilith.
There was loads of fan service and little easter eggs too – cars driving with that same ridiculous physics I remember, plushie bombs and Badonkadonks thanks to Tiny Tina. And Claptrap being voiced by Jack Black was something I somehow didn’t clock until the end.
It was fun, funny, and chaotic, exactly like the game, with way more detail than I expected. My son really enjoyed it too. We had fun laughing together. I only introduced him to Borderlands 2 much later, as he was too young to play co-op with me when it first came out.
The only thing it was missing? Butt Stallion. But honestly, that’s my only complaint.
It really helped. I was able to relax, laugh, and felt a bit more ready for the cluster attacks that night – because I’d had a moment of actual fun.
The Surprise Electrician
I woke up all groggy on Friday morning, and for the past few days I’d had this low level anxiety that I was forgetting something really important. I’d put it down to hormones, sleep deprivation, or cluster symptoms and tried to ignore it.
I was having my morning coffee – which does nothing for this level of tiredness, but helps with the headache I wake up with – when someone buzzed at the door. It was seeing him on the video phone that made it click.
“SHIT. I’M HAVING MY YEARLY ELECTRIC CHECKS TODAY”.
I had completely forgotten. Panic escalated immediately. I had not obsessively cleaned my flat for this. I had barely done anything the last few days. It is… chaotic in here. And my first thought was:
“Oh no. I’m going to have to say the British ‘sorry about the mess’… but this time there IS actually a mess.”
I didn’t even know if I was allowed to use the same social convention.
He arrived at the door and I blurted out, “Oh my goodness, I’m so sorry, I forgot all about this, I’ve been a right mess,” at which point he actually stepped back like a vampire being repelled, as if I’d just revoked permission for him to enter.
So I quickly followed it with, “No, you can still come in – I’m just sorry, I would have obsessively cleaned for this and I really haven’t.”
He laughed and said, “It’s okay, I’ve seen it all, love.”
Thankfully, he was as chatty as I am, and had great vibes. I know this because he spotted my shrine to Cyberpunk 2077 and immediately started talking about the games he plays. His list made me instantly think: this guy is a great guy. Skyrim, DayZ, Elden Ring. I do love that about gaming – it has such a strong sense of community. He also plays on Xbox, so we ended up chatting about the rumours of the new one.
He was here for quite a while. He talked to the lights. He talked to himself. He sang Country Roads. At one point, after he’d turned all the electrics off, he asked for some water. I, in my infinite wisdom, said, “I can make you a coffee.”
He looked at me and said, “You’ll have a hard job doing that”.
Me: “Oh my god… of course. Duh”. We both laughed.
I also had to try very hard not to make things weird. My cluster eye was so painful and raw that I kept unintentionally winking, and it was streaming constantly. I tried to redirect my winking out of the window instead, which worked brilliantly right up until I made direct eye contact with a workman on the scaffolding. I am somehow capable of making things weird even when I am actively trying not to.
My son, who had decided to go to Cardiff on his own that day – partly because he needed to rewatch Project Hail Mary several times for hyperfixation reasons – was very pleased to be far away from the “singing man in the house” situation when I texted him about it. He actually stayed away until I told him it was safe to come home. I guess I was volunteered as tribute.
However, for me, the surprise electrician turned out to be a nice surprise. Although he does have to come back for a full day in a few weeks, as apparently the housing company wants to replace all the lights. I do hope it’s him as I suppose I’ll get a second chance at, “Sorry about the mess” when there is not a mess. Except next time, I have to REMEMBER THIS IS HAPPENING to clean it first.
Pandora’s Vault of a Week
It’s been a week of being exhausted, confused, in pain, and apparently hosting a musical electrician. Nothing went how I planned. Most of it felt harder than it should have, and I spent a lot of it feeling like I wasn’t really awake for any of it.
But things still happened anyway (except for that electrician’s coffee, which absolutely did not happen at all). I wish I could rise from the ashes with flame wings, like Lilith becoming the Firehawk, but instead I’ve still somehow risen from bed – clutching my plushies, which are significantly less explosive than Tiny Tina’s.
For the song, and for mentioning Borderlands, the theme tune to Borderlands 2. Short Change Hero by The Heavy. I loved this song so much that I would often let the song play on launching the game.
Absurd Universe 