Arms outstretched, back from the dead: Something normal

We are back! Well at least back to whatever this version of normal is!

With that in mind, I’d like to dedicate this post to two separate groups of people in particular:

1. Those with long term conditions who believe they shouldn’t do normal activities.
2. Those who believe everybody with a long term condition must be faking it if they’re able to do normal activities.

Having said that … If you’re new here, hey! I’m Lucy. A 28-year-old who has been something of a medical mystery for over 12 years now. For some reason, my body likes collecting chronic conditions like they’re Pokemon!

Whilst I can think of greater things to be achieving in my 20s, if some good can come from me yapping about my experiences then I’d say that’s a win!

The moment normal as I knew it vanished …

“I’ll be back in a minute to talk to you properly, but I will be admitting you again …” Are words that echoed hauntingly as I lay flat on a trolley in majors.

21st June 2024 had been marked, starred and underlined in my calendar since some point in June 2023. Night 1 of Taylor Swift’s Eras Tour in London. My obsessive pre-ordering of her merchandise had payed off and I was single-handedly the reason my friends and I had bagged VIP pit standing tickets.

It was now 6th May 2024 and I was yet again waiting for a bed on the ward. There were 46 days until Taylor.

I had 46 days to be sealed and recovered …

I never made it to Taylor. In fact, I also never made it to:

• Sabrina Carpenter
• Olivia Rodrigo
• Coldplay
• The Script
• Remember Monday
• Lorde

But it was Taylor that stung the most …

Extraordinary, normal all at the same time …

Fast forward 470 days and somehow I was the iller than ever. My phone vibrated with a notification that woke me from umpteenth nap of the day.

Florence and the machine. Everybody scream. The new album. This halloween …

Florence, who I had adored since I was 13, announced a new album. This meant only one thing … a tour announcement would also be imminent.

Again, I was correct. Florence announced the tour for 2026 with presale tickets being released on 3rd September 2025. The Birmingham date listed as the second show of the tour on 8th February 2026.

Being a Ticketmaster expert, I secured my ticket with ease. Although not without the pain of having to substitute (and sacrifice) my beloved standing ticket for a seated ticket!

That gave me 158 days to be better because there was no way on this Earth (or any Earth for that matter) Florence would be added to that list of missed concerts.

151 days later …

One week until the concert and I found myself hitting the symptom jackpot. I’m talking multiple headaches, nausea, spinal pain, fatigue, joint pain, stomach cramps and brain fog. I’d travelled the extensive distance from my bed to the sofa and back to my bed again. That was all my body could take.

This couldn’t be happening again. In fact, I categorically would not let it happen again.

I hadn’t spent the past 151 days fighting for a flare up to blow everything up 7 days before the show. Back when I purchased my presale ticket, my body was so severely malnourished to the point that calling my aspiration of making the show delusional it would have been an understatement.

Yet here we were …

7 days out from the concert with 90 days of substantial nutrition inside my body. All about to be derailed by a flare up of all flare ups.

That wasn’t going to happen …

A new kind of normal …

I don’t know what normal means anymore, but I do know this: people see a snapshot of my life and seem to be unable of keeping their unsolicited opinions to themselves, so here are the parts that make up the whole story. I think I’ll call them the behind the scenes moments to add some context to that snapshot of my life.

My CSF leak causes me a progressively worsening positional headache which meant I had to accumulate as many flat hours as I could. Lying flat eradicates my symptoms temporarily, but more importantly allows my body to rest. After 762 days of actively leaking spinal fluid, I knew if I rested for long enough then my body would reward me with being able to function semi-normally for a generous 12 hours.

Unfortunately, this well known piece of information happened to be something I conveniently forget all too often. Nonetheless, there were no limits to the lengths I would go in order to be sat inside the NEC with Florence. Therefore, strict bed rest it was in combination with increased caffeine to try and increase my cerebrospinal fluid production.

Normal functioning is finite …

After 4 days of extensive bed rest, the boredom started to set in. This was simultaneously a good and dangerous sign. On the one hand, the boredom meant my body was recovering from the flare up. However, boredom setting in also ran the very high risk of convincing me I had completely healed and could now take on the world. Giving in to the boredom was almost certain to push my body back over the edge and see Florence sail off into an unreachable distance.

That’s something people don’t see. Having to pick a single moment at which I wish to expend my energy because despite resting the extent to which I can function normally remains finite. There is always a limit not proportional to the extent of the sacrifices made.

The moment …

8th February 2026 arrived. My hair was curled, outfit on, and flower headband secured. On the less glamorous end of the scale, I was 50% painkillers, 50% KT tape, but 100% ready for Florence. This is normal life.

When I tell you the tears that rolled down my cheeks were uncontrollable the moment she appeared on stage, I am not exaggerating.

“I can come here and scream as loud as I want” is the 9th line Florence sings of her opening song (and title track) Everybody Scream. My goodness did I want to scream. No, screw that, I needed to scream.

Getting up and dancing came with physical risks. Not getting up and dancing came with emotional regret. Then the introduction to shake it out started to play. There would be emotional regrets and you best believe I was up on my feet to scream it’s always darkest before the dawn. After all, Florence herself reminds us it’s hard to dance with the devil on your back so shake him off. For 769 days (and still counting), my devil had been (and continues to be) my spinal CSF leak.

And I’m dammed if I do and I’m dammed if I don’t …

I filmed snapshots, I lived in the moment, and I reached a new level of spiritual comfort. I went through every emotion known to man and healed parts of my soul I thought were broken for good. Whatever I did would receive criticism from somebody at a later point.

In one breath I shouldn’t make my illness my whole personality. In another breath if I can leave the house and do something normal I must be exaggerating, or straight up faking, being ill.

But for 2 hours non of that mattered. In fact, nothing at all mattered. I wasn’t the medical anomaly that nobody knew how to treat. I was a 28 year old singing with Florence for her inner 13 year old self.

Sometimes I think it’s getting better and then it gets much worse …

By three quarters of the way through, there were no painkillers left in my system, and the KT tape was losing stickiness. The pain in my head, neck and spine hit me like a bucket of ice cold water. I remember blinking for a split second longer than is normal, wondering if it was time to call it quits whilst I was still able to.

Memory fails me. Names and faces blur. There is only after or before. Am I so different? have I changed? I do not recognise my face. The scar fades, it pulls inside. tugging at me all the time.

Hearing those words live engulfed my body a level of pain relief medication could only dream of achieving. If I could have bottled it up, I would never be forced to experience pain again. Sympathy magic is my favourite song off everybody scream (closely followed by buckle and one of the greats) because it captures every emotion I have towards my spinal leak and the changes it has imposed on my life.

So I don’t have to be worthy. I no longer try to be good. It didn’t keep me safe, like you told me that it would. So come on tear me wide open. Till I’m losing my mind. Till I cannot contain it …

I’m on fire but I’m trying not to show it …

Florence’s penultimate song of the night was free. A song that encapsulates the challenges of the past 769 days of my life, but also honours the fact I made it through so many moments I didn’t think I could.

I’m always running from something. I push it back, but it keeps on coming. And being clever never got me very far. Because it’s all in my head … You’re too sensitive they said … I said okay, but let’s discuss this at the hospital …

Is this how it is? Is this how it’s always been? To exist in the face of suffering and death and somehow still keep singing?

You can’t carry it with you if you want to survive …

The night was everything I dreamed of and more, but the physical crash that followed was inevitable. There wasn’t space for post-concert depression because my body was physically broken.

Again, this is the behind the scenes the rest of the world didn’t see …

I got out of bed only to lie straight back down on the sofa, but the sofa wasn’t long enough to lie flat, so I went straight back to bed. The pain in my head screamed to be lying flat on my back; the pain in my spine screeched to be curled up in a ball on my side.

In between the tears, the frustration, the resentment and the hurt it seemed as though the universe felt I was worthy of only a fair moment rather than a fair chapter. I knew the physical risks of going, but the reality when it hits always stings because the life I dreamt of living, dream of living, almost never aligns with the body I am now trapped in.

“You knew the consequences …”

“It’s your own fault your suffering …”

“Don’t complain because you chose to go …”

These words echoed relentlessly inside my brain, filling every moment that wasn’t already consumed by the intensity of the pain. Nobody had said them to me yet, but historical events had conditioned me to expect them the moment I hit post on social media. Everyone would have access to the highlights, a snapshot and inaccurately conclude there’s no hidden footage.

So come on, come on, I can take it …

It took me 7 days to start feeling remotely human again, but even then my pain still sat (un)comfortably above my baseline levels. I wanted to go again, but imposter syndrome was consuming me.

“I can get away with having been to one show, but multiple will just fuel their falsified evidence that I’m faking my symptoms …”

It isn’t fair that surviving everything I have and getting to the point where I am able to enjoy something would become evidence to try and support a narrative that I was never struggling at all.

Then it struck me. I don’t know what it was. Maybe the morphine kicked in, or maybe my body just finally started to replenish to lost levels of spinal fluid, but it hit me like a lightening bolt. I was so fixated on the opinions of people who do not matter in the slightest. It’s never nice hearing negative, or untrue things about yourself, but I was being actively influenced by the opinions of people I would never give a second thought to under any other circumstances.

I can’t stop people from having an opinion, but I can stop myself from letting them influence me. Until those people judging have witnessed the behind the scenes in the form of the days it took to prepare and the days it took to recover, then how can I possibly give them the right to have an impact on my decision to participate?

Give me everything you’ve got …

My illness does not disappear when I step outside, but it isn’t necessarily visible to the world. This leak has interrupted my life more times than I am okay with, but it does not get to define the things I love. It certainly does not get to erase my right to live. Enjoying a moment won’t and can’t abolish my reality, but it can certainly help me forget about it for a while.

In the words of Florence … And for a moment, when I’m dancing, I am free …

May your symptoms always be believed.

Your favourite headache x