Sun, Sweat & Subluxations: Surviving Summer with EDS

By Antonia | Unremarkable Me

Let’s talk about British summer. That magical five-day window where the whole country collectively loses the plot.

The second the BBC even whispers the word "sunshine", we become a nation of deluded optimists. People sprint to B&Q for disposable BBQs. Tesco runs out of ice pops. Flip-flops appear on feet that haven’t seen the light of day since October. Someone inevitably straps an inflatable flamingo to the roof of a Vauxhall Corsa. And just like that, Bognor Regis becomes the Costa del Sol—with more sunburn and fewer morals.

But if you’re living with Ehlers-Danlos Syndromes (EDS) or Hypermobility Spectrum Disorders (HSD), that sudden shift from drizzle to blazing heat isn’t just a cause for awkward tan lines and day drinking regret—it’s a genuine health hazard.

As I write this, I’m draped over a paddling pool like a Victorian fainting, woman, clutching an ice pop like it’s a medical device. Spiritually, I’m one white vest and a pair of knickers away from a 1985 seaside holiday special. I am not thriving. I am not radiant. I am trying to hold my body together with electrolyte drinks and sarcasm.

Here’s why summer is no picnic when your connective tissue is made of overcooked linguine and your autonomic nervous system thinks "regulate temperature" is a fun little suggestion.

Sunshine: Great for Mood, Terrible for EDS

1. Dysautonomia: The Weather Update No One Asked For

If you live with EDS, there’s a solid chance your autonomic nervous system is on strike—especially if you’ve been blessed with POTS (Postural Orthostatic Tachycardia Syndrome). This means your body can’t regulate blood pressure or temperature properly, and heat turns you into a fainting goat in slow motion.

Symptoms in hot weather can include:

• Dizziness and nausea

• Palpitations

• Blurred vision

• Feeling like your blood has replaced itself with lukewarm jelly

Your core temperature shoots up. Your blood pressure tanks. And you’re left wondering if you’re sunbathing or gently dying.

Resources:

• POTS UK – Coping with Hot Weather

• Dysautonomia International – Summer Survival Guide

  
  

  2. Joints Gone Wild

Heat makes connective tissue even more lax. For most people, that’s no big deal. For those of us with EDS, it means:

• Increased dislocations and subluxations

• “Slippy” joints that move when they shouldn’t

• Needing three supports just to sit upright on a deck chair without becoming modern art

Even the act of sitting outside can become tactical: Is the chair stable? Is your knee going to randomly exit the chat? Will standing up feel like reassembling an IKEA flatpack?

3. Swelling, Fluid Retention & The Human Sausage Roll

Hot weather invites inflammation like wasps to a picnic. It’s common to experience:

• Puffy fingers, ankles, and faces

• Increased pain and stiffness

• Compression gear turning into medieval torture devices

You know it’s bad when your rings won’t fit, your knees are squishy, and your compression socks are threatening a mutiny.

4. Skin That’s Too Fancy for This Climate

People with EDS often have skin that’s fragile, stretchy, and healing-resistant. Add in some UV rays, and things go south:

• Bruising or breaking without warning

• Rashes or sunburn from a “light breeze”

• Wounds that heal at the speed of a council roadworks team

If you’re also on medications that cause photosensitivity (like antibiotics, certain antihistamines, or anti-inflammatories), even mild sunshine can leave you looking like you lost a fight with a toaster.

📚 Resources:

• The Ehlers-Danlos Society – Managing Symptoms

• NHMedsS – Sun Safety & Photosensitive

• 
  

The Summer Survival Kit for EDS Warriors

🔥 What’s Happening	❄️ What Might Help
Overheating/fainting	Cooling wraps, fans, lukewarm showers, shaded spaces
Dehydration	Oral rehydration salts, electrolyte tablets (e.g., Nuun, Dioralyte)
Dizzy spells	Lie down with legs raised, hydrate, avoid standing too long
Slippy joints	Avoid sitting in weird positions too long (harder than it sounds)
Swelling	Cold compresses, elevate limbs, gentle massage, loose clothing
Skin issues	SPF 50+, hats, mineral sunscreen, breathable fabrics

DIY Electrolyte Drink:

• 500ml cold water

• 1 pinch salt

• 1 tsp honey

• 1 splash fruit juiceCheap, cheerful, and doesn’t taste like regret and artificial lemon.

  
  

Final Thoughts from the Inflatable Flamingo

Here’s the truth: British summer is chaos. And when you live with EDS, it’s chaos with added medical complications.While others are out snapping selfies with cider and heatstroke, you’re just trying not to faint while reaching for your antihistamines.

You are not weak for needing to rest. You’re not boring for skipping the beach. You’re managing a condition that turns temperature regulation into a full-time job with no paid breaks.

So if today, all you can manage is surviving—that is enough.

And if anyone asks why you're lying flat in the shade wearing cooling gear and eating salt like a Victorian ghost with a Powerade sponsorship?Tell them you’re a chronically fabulous weather-resistant miracle, and they can take it up with your autonomic nervous system.

Helpful Links & Resources:

• POTS UK – Tips, resources, and support

• Dysautonomia International – Medical research and patient guidance

• The Ehlers-Danlos Society – Comprehensive info on EDS & HSD

• UnremarkableMe.com – Advocacy, awareness, and the occasional rant from the paddling pool

Love,Unremarkable Me