June Life Update & Faves


Why Not make a weekly infusion, into a ritual of care when everything else is falling apart? teehee

Right, so let’s start with the unsexy stuff: I’ve had a spirometry test this week, and I’ve got a CT scan booked in for Saturday (yes, tomorrow). That combo has firmly hijacked my week, sent my health anxiety into orbit, and basically left me too frazzled to work. I’ve already had two panic attacks and cried twice today alone — glam, I know. The worst part? I only found out about both appointments a week ago and back in May was told by a different doctor that I was doing really well, and they would see me next after summer... False Hope... Emotional rollercoaster.... No time to process, no room to breathe (ironically), and I’ve had to step back from my self-employed call centre work just to keep up with the appointments and the spiralling.


Apparently, some of the respiratory team think I shouldn’t have recovered from that chest infection — “people like you never do!” a nurse said that to me...  which was cheerful, and deeply hurtful actually... So now I’m in the middle of screening bloods and scans, allegedly to rule out cancer or bronchiectasis, but it feels more like they’re hoping to find both. Because what fun is a girl with rare immune conditions and asthma unless she’s also a ticking time bomb? Especially when she ought to be dying of a chronic infection, not recovering... Let's study her to find out more... Some want good for me, and just want to understand more about the CVID for others that may have it... and honestly, I am in that camp, and then others have ballasted me with the most fatalistic stuff and are in team pessimistic... Apparently I need humbling, they should hear what I told the therapist while doing a 21 day course about myself... haha I actually talk to myself really harshly... 

And this, babes, is exactly why I haven’t updated this blog in weeks. It’s not personal — it’s just all my energy is being spent on surviving medical whack-a-mole and showing up to every appointment looking polished, pleasant, and compliant, because a woman who isn't pretty and quiet has a conduct disorder, and all stress is a mental illness solved by having a baby, and antidepressants.... allegedly... My journal is dusty. My tarot cards miss me. And honestly, I do too.

But! In the midst of all the poking and prodding, there have been little glimmers. Like, my friend J — a gem of a woman who lives just up the road — took me out moth-hunting after I had an anxiety attack (as you do). We were looking for clearwing moths, and while I didn’t spot one, the fresh air and the conversation about plant-based cooking helped more than any medication ever could. She even gave me some fab recipes to try, like this one... which looks amazing...





Like seriously... LOOK AT THIS PASTA 



Speaking of which… it seems my mostly plant-based diet has paid off. Since being fatshamed by my respiratory consultant (yes, that happened — told me to lose 20 kilos if I wanted to breathe properly), I’ve lost 7 kilos. And I’m not mad at it. My peak flow hit 630 the other day. Shooketh is an understatement. And while yes, weight loss may be helping the asthma, I didn’t expect the medical system to weaponise my progress into some cautionary tale of impending doom. Girl can’t win. If you stay fat, it’s your fault. If you lose weight, you must have cancer.


Losing weight is weird.... when you're massive, you dream of all the clothes you're gonna wear when you're no longer built like a fridge.... but when you lose weight, you're like "I don't know what to wear... do I dare try this?" And you STILL start your search at the largest size on the rail and then move down... 




Anyway. In the spirit of “treat yourself because you’re still here,” I’ve been quietly collecting little treasures. On a post-appointment charity shop tour with my mum, I picked up a linen shirt from the Red Cross for £7, a floral Lipsy playsuit (size 12, get in! .. I am not a size 20 anymore!) for a fiver, and — drumroll —









 a Christian Lacroix mini backpack. Black leather. £3. No notes. Mum also found me a brand new Body Shop round brush for 75p, which has now been lovingly incorporated into my new infusion-day routine alongside rose oil and dry brushing.











 Healing might be hell, but skincare doesn’t have to be.






And let’s talk about my new Rebecco tablet. £45 and honestly worth every penny. (It’s already gone up to £80 on Amazon, I checked. I am practically Warren Buffet.) I also got the marble case for a fiver, again, charity shop... Father's day was again hard without my dad, so I think in hindsight it being father's day is why there was a sale on Amazon... (Get Yours Here- https://shorturl.at/2mlzS )

Almost like my dad was looking out for me though beyond the grave...  I’ve linked it to my local library’s BorrowBox app (check it out here- https://www.borrowbox.com/ )
so I can access newspapers and magazines — it’s my little window to the world, especially when my life feels very narrowed down to blood test queues and scary scan letters. I seem to have a new full time job as a patient, and test subject. I don't get paid, Isolation is part of the job, it costs ME money to have this job... and I have no say in it hahaha.... there's no resignation period. 


And I also watched "Four Seasons" which tells you everything you need to know about my sense of humour... But once I watched the last 2 episodes of that I started "Riviera" And yes... I do have a Fiji water and a Matcha Latte.... 




I even used it on the coach to London this month, watching Riviera while sat next to a manspreader who snacked on crisps and pasties, licked his fingers, and wiped them on the seat in front. What a vibe. I, naturally, responded by taking up as much space as possible and holding my own — it’s all one can do, really. The coach was 2.5 hours late (standard), and the trains were over £100 and no quicker, so it was a toss-up between inconvenience and bankruptcy. Everytime he coughed... I sprayed the air with Dettol like an owner taming a naughty kitten, he eventually moved seats to do the same vile shit a few seats down... 
The fact he had a wedding ring too... someone married this man and I can't get a text back? Universe... WTAF?! 






Oh! Speaking of London — I visited Grenfell Tower. My parents are Londoners and I still have family there, so this one hit hard. I’d seen the trending documentary on Netflix while curled up in bed on my tablet, and felt so shocked and ashamed that I didn’t truly understand the scale of the rage when it happened. That cladding. That tower. It’s enormous, and the fact they thought that cladding was appropriate is horrifying. And then you turn your head and see Trellick Tower next to it — just as brutalist, just as bleak. I went to leave a flower at the so-called Memorial Wall, which is basically chipboard with a banner draped over it. It’s not enough. It will never be enough. There’s been no justice, and I’m glad I went, but I left feeling pissed off, and sad. 

I actually have nothing to say... because no words seem to justify this. 




To keep breathing (literally), I’ve been frequenting the spa at the five-star hotel up the road. Yes, it’s posh. No, I’m not boujie with ideas above my worth... It’s just walkable (or hobble-able) from mine, so it ends up cheaper than wrestling with public transport in an N99 mask, praying I don’t sit next to another biological hazard. The sauna has helped so much with my breathing lately — it’s become part of my actual health plan, unofficial as it is.

Alright, now, I’ll leave a little space here to show off my new Chloe duffle bag that I got especially to take to the sauna/spa in that place... (factory second, £17 on eBay, don’t judge me — she’s stunning).  
And also, I know how often they clean that place! IT's A LOT! 


Chloé Duffle bag, in her natural Habitat. 


Until next time, when hopefully the scans don’t show me sprouting an extra lung or something equally on-brand. (Actually no... I hope I have 4 lungs like a LIZARD! haha) Mostly I hope that they don't find anything team pessimistic actually want to find. 

Love,
Clare Alexandra x

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