2.47am. Not a dream. The cold patch under my thigh is real, and it’s the dressing I put on at teatime giving up and leaking through to the sheet. My side of the bed is soaked. Half my brain is asking whether I can just ignore it until morning.
You can’t. I’ve tried. It’s still there at six, only now it’s stuck to you.
This one’s for that night. Pain, leaks and dressings that turn sleep into a shift you didn’t sign up for.
What this is (and isn’t)
Lived notes from a bloke who’s had HS since 2007 and plenty of nights like that. Not sleep medicine. Not a treatment plan. Not me telling you what to take. Just the bits that make a flare night shorter and less grim.
If you’re new and still clocking what HS actually is, What is HS? first. Then come back.
Before bed: set it up for the worst version of tonight
The trick is doing the thinking at 10pm, while your brain still works, so 3am you only has to follow instructions.
- Fresh dressing at bedtime. Not the teatime one stretching another eight hours. Check it properly once, change it, then leave it alone. Which pads you trust is its own post — Best dressings for HS in the UK.
- An old dark towel, folded, under the flare side. That’s the whole bed defence. A leak means swapping a towel, not stripping a bed in the dark.
- A pillow between your knees if it’s thighs or groin. Stops skin rubbing on skin every time you turn over.
- A bedside tray. Two spare pads, wipes, a few nappy sacks, a clean pair of soft shorts, water, phone on charge. Plus whatever you’d normally take on a rough night, if that’s your routine. What you take is between you and your clinician, not me.
Everything within one arm’s reach. If you have to get up to find the stuff for getting up, you’ve lost.
When it wakes you: three minutes, not thirty
You will wake up. The only goal is getting back down fast with as little drama as possible.
My routine, same every time:
- No big light. Phone torch or a plug-in nightlight. The main bulb wakes your whole brain, and anyone else in the house.
- Tray, then bathroom. Sit on the edge of the bath. Wet pad off and into a nappy sack, quick wipe, fresh pad on. Thirty seconds of faff, not a spa treatment.
- Swap the towel, not the sheets. Wet towel goes in the laundry basket. Dry one goes down. The sheets can wait for daylight.
- Clean shorts if you need them, then straight back. Don’t tidy, don’t check your phone, don’t start googling.
Some nights that’s about as good as it gets. It’s 3am and it fucking hurts, and the best you can do is be dry. Dry is enough to be going on with.
When sleep won’t come back
Some nights the pain’s too loud and lying there furious at the ceiling just makes it worse. That’s when I give up on the bed.
I go downstairs. Sofa, old blanket, flare side up so nothing’s pressing on it. Telly on low, something I’ve seen a hundred times so there’s nothing to follow. A rerun of a quiz show at 4am is weirdly good company.
I don’t scroll the HS groups at that hour. Every horror story looks like a prophecy at 4am. Save the community for daylight, when you can take it in.
If I nod off on the sofa, that counts. Sleep is sleep. Nobody’s handing out medals for doing it in the right room.
The morning after
You’ll feel like a used teabag. That’s normal, and it isn’t a character flaw.
If it’s a school morning, Freddie and Jenson get cereal, clean uniforms and a dad who’s tired but there. They don’t need the 3am director’s cut.
The towels go in the wash. The tray gets refilled tonight, not “sometime”, because tonight might be a repeat. Then it’s a daytime problem, and that’s got its own post: the HS bad-day kit covers carrying the flare out of the house.
Quick answers
Is a waterproof mattress protector worth it with HS?
For me, yes. It’s a backstop under the towel, not instead of it. I’d go for a breathable one. The crinkly plastic sort can leave you hot and sweaty, which is the last thing a flare needs.
What if it’s pain keeping me up, not leaks?
Then skip the towel and focus on not pressing on the lump: a pillow to prop you, the sofa if lying flat is worse, and water and your usual routine within reach. If pain’s wrecking your nights week after week, take that to your GP or HS team. It’s worth saying out loud at an appointment.
Should I sleep somewhere else when I’m flaring?
If it gets you more sleep, sure. The sofa, the spare room, the other side of the bed: wherever you can lie without pressing on the flare. The bed you sleep in matters less than actually getting some sleep.
What if tonight feels different from my usual flare?
Then a blog isn’t the right place to be looking. If you feel properly unwell or something’s changed and your GP’s shut, use NHS 111 (online, NHS App, or call 111) (or your local out-of-hours service — Northern Ireland differs). In an emergency, it’s 999 or A&E.
Where to go next
Set the bed up before you need it. Keep 3am boring. Give yourself permission to finish the night on the sofa.
If you’re travelling and dreading a hotel bed, Travelling with HS has you covered.
Living Life With HS is patient-led: Support, Awareness, Self-Advocacy. If you’ve got your own 3am routine, or a night that went sideways, we’d love to hear it through the Your Stories form. No pressure, no polish needed.
Dry is enough. Morning still comes.