Aide Memoire to Self about a Day Out at the Seaside with EDS

imageBefore you set out, ignore your painful hips because you know that if you move you feel much better than if you stay still.

Pack up your troubles in your old kit bag and head out.You’re on holiday by the seaside so you want to walk to the sea and watch the boats on the Solent.

The first five minutes out is really painful in the hips, coccyx. Have you made a mistake? Keep going. Should you turn around? Keep going.

Mindfulness techniques help. Imagine, no feel the ground under your feet. Each tread supported by mother earth. Spread the toes, stabilise your tread. Feel the good ground underneath your sandals with the soles of your feet. That’s good. No flip flops here m’lady, only shoes that you can’t wobble off. Tread, tread, tread like a monk. Imagine you are a Shaolin and you can walk up walls with concentration.

After seven minutes you’re surprisingly good, the wrangy strings of your body have warmed up in the sunshine and you feel a little younger than when you left home. Time travel. You could almost skip. Just once.

Don’t push it, Mrs.

One foot in front, one behind. Both gently, firmly, wisely on the ground.

After nine minutes the pain hits. You’ve over done it. All this carefree walking, looking at the gardens and the rose-bay willow herb on the scrub land. All this joy of feeling the sun on your neck,….you forgot it would come back. How can you forget that?

The search. Wish there were more benches on streets in England… compose a letter in head… Dear relatives of dead people, could you put benches on every pavement? Every corner perhaps, so people with elastic hips can rest and let the spine breathe?

A low wall with a wooden fence. Looks like at least two inches of support. Shuffle your bottom into the fuschias. They wont mind. They rest their fairy caps on your hips, loving your shade.

What if some grumpy old man comes out and tells you off?

Get off my wall!

Like when you were little and playing hair plaiting or horses. Not now, surely. Not now you’re almost grey. Stay as long as you dare. The sun is past its zenith. Your over delicate skin wont fry at 5pm.

Q: How long is seemly on someone else’s garden wall?
A: As long as you need.

From here on in there will be frequent rests. That’s fine. Just fine.

At last. You see the sea.

The ache in your feet and hips is extreme now but there are two roads to cross. Talk to self in positive terms. Keep it going.Theres a difference between an extreme ache and pain. Think about ways to describe that.

As you get to the esplanade, notice there’s a flat cement sea wall. It’s the height of hips and the width of a single bed. Climb. Lie down. Make an almost silent sound of complete relief. Note how spine, hips, thorax settle like a skeleton in a cartoon…clickety clacking to rest.

Lie for five minutes. Not too long else the stiffness will take hold and you will be back to square one.

Think through contents of purse. No pain killers. Note to self. Never go out without pain killers again.

Notice how the cement has little stones in it, tiny ones. Wonder where they come from. Listen to the sounds of children playing. Turn head. Marvel at the heat-hazey horizon, the boats boating, the hovercraft flying on rubber cushion towards the mainland. Wish you could stay longer in a way but it’s sensible to move. Perhaps you’ll walk to the edge of the sea. Think about getting up. Remember that a physio once told you that getting up like an abs-cruncher is actually bad for the body. So, roll over to the left and raise your upper body from that angle with precision and care. Nothing in particular happens.


Intense, excruciating, breath-taking pain hits your chest.

Breathe. Walk towards the sea. Everything in your upper body shouts NO!! Turn back. The pain in the left side of the body is beyond what you can stand.

Turn around. Go back to the wall. Sit.


Around you, families fight, elders lick ice creams, the tide comes in slowly.

Something must have gone wrong on that turn and rise from the wall. Something has relocated itself. But you don’t know what. This is a new one. The only other time this area of the body has been this painful is after a fall down some stairs about 18 months ago. You were tired, your foot slipped, and you fell badly. But that was so long ago.

After five minutes sitting it feels like the pain is manageable again. It’s sliding down a scale but it’s still pain. This is no ache.

Movement is best. Movement then rest. Whatever has relocated will work itself back where it should be eventually.

Stand. Walk a little.

It hurts so much it steals your breath again.

Sit again.

You have to get home. Wait a while then move. Try again. Walk. Ok you’re getting used to this. Breathe. You can do it. Breathe. Walk. Good.

Walk a little faster than a snail. It leaps up. Not the snail, the pain. On the Richter scale of severe it’s a 9 backing 10, west east north and south, all in the chest and impossible. Breathe. Calm. Slow.

Spot an ice cream stall. Wonderful. Ice cream cures everything. Order vanilla. You can do this in pain because extreme aches are quite normal. Pat on back.

Stallholder gives you a cone wrapped in paper. Who wraps a cone in paper? Say nothing. No extended conversation possible without revealing that you have chest pains. Last time you admitted you had chest pains overzealous person rushed you to A&E. A&E nurses don’t get it. No point in piling misery on misery.

Sit at table. Breathe. Watch beach. Breathe. Eat ice cream. Just sit.

Epiphany. It’s not the ice cream but the sitting that eases things. Deduce therefore that standing brings this intense pain on.

Q. But the pain isn’t in your legs. It’s in your chest. So what is different about standing? What changes in the upper body?

A: Arms. The arms drop.

Q.Q.Q.Q:So is it the collar bone that has relocated? The shoulder. Has the shoulder dislocated?

A: It moves ok, circle it. Something under the left breast stings. Something there. A rib perhaps shifted out slightly. Perhaps if you walk, holding your arms as if you were sitting and eating ice cream, your thorax wont hurt so much.

Try walking the short walk to the station like that. There’ll be taxis. Taxis home and co-dydramol and rest.

Walking with a pretend ice cream feels as if it might draw attention and the last thing you need is attention. So, disguise it with shoving thumbs in waist band. Let trousers take the weight of your arms. OK that works. Feel a bit better. Feel like a cowboy, thumbs in jeans.

Breathe almost normally again. Walk slowly, John Waynely.

No taxis in the rank but you feel as if, at a slow pace, thumbs in belt, you can keep going. At least hips don’t hurt now because the other pain is so bad.

Turn into high street for shortest way home. Walk at a slow pace, steadily. Get a little bored with cowboy saunter. See if you can walk with hands by sides now.

Pain wracks body again.

And again with the thumbs, cowboy style. Or how about behind you like Prince Phillip but hand in waistband rather than clasped.

Yes. Pain gradually subsides. Walk.

Wonder what is going on in left side of body. Take right arm and stroke the top of shoulder, where masseurs usually squeeze and tell you in vaguely accusatory way that there’s a lot of tension. Dig in a bit, massage. Send excruciating pain through body so that you can barely breathe again. Stop. Stop walking. Head for the precinct flower bed. Sit on edge. Sudden inexplicable shooting pain in left cheekbone, as if you have an abcess on the tooth.


Dear gods don’t let dodgy root flare up. Dentist says it will flare up every few years. But can I have that one later please?

Breathe. Calm. Calm. Calm.

God grants favour. Pain in cheek subsides.

Remember not to do that again. Interesting that the tooth root canal bone is connected to the shoulder muscle bone.

Stand. Walk on. Walk on. Slowly. Breathe. Left arm behind you in wastband.

Gently massage breast bone as if you have indigestion. Up a bit. Colar bone. Is it the collar bone? Stroke very, very gently right across from collarbone to collarbone. Something good about that.

Only about two streets away from home now. You can get there.

Sudden ping. Not a crack. A white light in the skull. A dull click in the chest on the left but more significantly the ping in the skull and corresponding sudden knowledge that everything is going to be all right.

But know that you will still hurt for a while yet. The slow steady pace must continue, the arm behind the back. Everything you know. But whatever it was has moved back in its place and soon the body will ease. Not immediately but soon. And it always does.

Start wondering if perhaps instead of those constipating pain killers you could drink the nice wine you’d planned to have with dinner. Bit early but, experience tells you that recovery is best through mindful relaxation. So a glass of red wine yes. That helps relaxation and circulation.

Back home, key in door. Relief.

It’s 6.30pm. Open that bottle and pour a glass. Text friend to tell her what you are doing so you are not, technically, drinking alone. Cork it for dinner. Thankfully, that’s not your problem.

But do ask self if you are a sad fuck. Say out loud:

Q: am I a sad fuck?

Burst out laughing. Notice it doesn’t hurt.

A: You have gone so far beyond being a sad fuck you’ve burst through the stratosphere of sad fuck that cossets the everyday and are now sailing betwixt Planet ThankGodThat’s Over and the supermoon called You’reafrigginHero.

Enjoy cooking dinner. Even skin the broad beans and discover they really are better like that so it’s worth the effort. Drink another glass of wine with dinner and watch a documentary about Rod Stewart.

Forget completely about pain and dance a little bit to ‘IIIIIIF you think I’m sexy…’

Next day, having told no one about momentous afternoon with pain, decide to write a blog. While editing start crying a bit. Tell self you were a very brave soldier. Notice the blog contains nothing about fear. 12 years since EDS diagnosis and you’re not in a wheelchair yet. Ask self if it feels a tiny bit closer today.

Make note to watch paralympians handling wheelchairs. And make sure you pace your sitting at the keyboard with timed, 8 minute bursts.

6 thoughts on “Aide Memoire to Self about a Day Out at the Seaside with EDS

  1. Pingback: Aide Memoire to Self about a Day Out at the Seaside with EDS – Pain Pals

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