Be running up that hill…

Chronic illness is great at kicking you when you’re down. Lamentably, it also likes to give you a dunt when you’re flying too. It would be taxing to say which is worst, but falling from a height certainly hurts.

That was me last week. I was on a lovely break in the cutest cottage by sea. Soaking up the calming sea side views and thoroughly enjoying time with my nephew. The sun was out, we headed to an incredibly beautiful beach. I watched the boy run around having the time of his life. I paddled in the refreshingly cold sea. Took deep breaths, listened to the lapping waves & felt happy.

Tide coming in on st Cyrus beach

As it edged towards late afternoon people started to leave. I began to worry about the hill I’d have to climb to leave the beach. As we packed up I saw people stroll up. I knew it was going to be a problem.

And I was correct. That little sand dune fucked me up. I started trying to ascend it alone, but quickly realised that wasn’t going to happen. It’s hard to get your footing on slopping sand. Even harder to get purchase in moving ground with a walking stick. With every step the sand slid down the hill pushing me back. It was all working against me.

Foot with black painted tie nails on the sand with wave approaching

My sister saved the day. She let me lean on her, literally & half dragged me up that hill. Every step was excruciating. My knees felt like the where going to explode. My back, wrists, elbows & shoulders were all screaming. I couldn’t catch a breath, my lungs felt as though they were filling with the sand I was slipping on.

That little sand dune appeared to go on forever. The bench at top a promised land I’d never reach. Listen, the pain was bad, it wasn’t the culprit of tears at the summit. As my sister helped me struggle I saw my 3yr old nephew gamble up the slope. An old couple comfortably passed us. A nice man with a very concerned look stopped to ask if he could help. I focused on breathing whilst my little sister pepped talked me up that hill. I repeated ‘you’re nearly there’ in my head and tried my upmost to hold back the tears.

When I finally had my bum on that bench my nephew ran to give me a cuddle. The tears started streaming. I looked at the beautiful view as I silently cried. I didn’t want to make eye contact with my loved ones. I didn’t want my little rascal to see me in this state. I recognised the concern in my sister’s voice & the love in the silent shoulder my Mum offered to hold me upright. As much as I loved them for it, I hated that I have to be this way.

View from hill over a beach.grass & wildflowers with sand past leading down to the blue sea

It was another one of those ‘how did I get here’ moments that chronic illness brings. I never imagined it’d take a support team to get me up a hill at 40 years old. I’m not a person who likes to be publicly vulnerable, yet here I am. Regularly fragile & exposed as I try to scratch out something close to a normal life. I felt guilty and embarrassed and pathetic and grateful and burdensome and scared and loved. All crashing over me with more force than the waves below could ever muster.

I concentrated on the nature around me as fought to compose myself. I attempted to ignore the curious looks from strangers & the pain coursing through my body. I listened to the the waves and birds. I let the blue horizon pull me through all the heavy implications placed on the people I love. I dried my eyes. I got back on my feet.

The day continued. Me, making my way slowly behind the others. Stopping to rest. Taking pain relief. Zoning out when we got back in the car. It was all so much bigger than that stupid hill. I was hoping I hadn’t distressed the others. Dreading the pain that I knew was still to come. Feeling sad at the thought that I probably wouldn’t ever return to that blissful beach.

It is painful to accept one’s limitations. I find it incredibly hard to let more & more go. I hate that I’m always the one who has a problem with the plans. I despise that my difficulties are so visible. Gasping for air at checkouts that take a fraction too long. Sitting on floors when there’s no seats available. Calling in advance to check if my malfunctioning body can be accommodated. I don’t like being on display, don’t want to answer questions about my stick, shake off the exasperated sighs or smile at pitying strangers. No matter how kindly meant, I’d rather be suffering in private. I’m exhausted by the knowledge that I’ll pay for every slice of fun. Even more so by the battle with myself to keep reaching for those good times anyway. Most of all I’ll forever regret how much this impacts all the wonderful people in my life. I wish I could stop being a hindrance. I never want them to have to worry. I appreciate every tiny thing they do for me, but I still wish they didn’t have to.

This is chronic life. It’s not just the pain & illness. It is all encompassing. Lots of the time the only way to deal with that is to push it to the very back of your mind. These moments of brutal clarity never stop taking me by surprise.

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Running up that hill…

Day 2 of the fringe was a well thought out affair. We had selected (bickered over) which shows to see & carefully scheduled the day. With potato scones in my tummy & a truly excellent outfit we headed out.

Despite all that diligent planning we still managed to miss our first show, mainly because I just can’t move very fast. Thus we found ourselves with time to kill & an abundance of options. We took a punt on Super Sonic 90’s Kid. Me because I’m always up for anything 90’s & the Toyboy because he had spied that it involved gaming. Sooz Kempner spent the 90’s playing Sonic the Hedgehog & the like. She’s now wondering if her 90’s experience had long term impact. The show is a feminist gaming nostalgia fest. Throw in some on the edge one liners, an empowering theme & impressive belting of show tunes and you have a winner. I don’t think I’ve ever played Sonic & I still enjoyed it. If Sooz hits your city I’d definitely recommend buying a ticket.

Super sonic 90’s kid flyer

Sooz Kempner Edinburgh fringe 2018

The TB rushed me to the next venue so quickly that I didn’t have time to check what we were seeing.So, when I found myself in dark room before a spangly gyrating medieval knight I was a little taken aback. Boogie Knights was a hilarious disco infused theatrical romp set in a world where boogie knights must defeat an evil rock king. It’s ridiculous & cheesy & fantastic.

Adam Larter Boogie Knights

After lunching on some amazing falafel on South Bridge (or as we now call it, falafel st), we got back en piste. Robin Ince was recording Book Shambles sans Josie Long, but plus really cool guests. The afternoon that we caught featured Kiri Pritchard McLean & George Egg. Both guests were insightful & interesting. Robin was, as always, the perfect facilitator. I picked up a few book recommendations & I’m dying to catch up on Kiri’s serial killer podcast. There were giggles & thought provokers in equal measure, which is my ideal fare.

Book Shambles Edinburgh Fringe 2018

We marched up yet another incredibly steep hill & paused for more dreaded #ootd pics. I got a lot of lovely compliments on my attire in Edinburgh. I’m not going to lie it feels good to be praised from top to toe. So, I was feeling pretty good as we arrived back at the Voodoo Rooms for Mandy Knight’s The Dark Knight. This was another ad hoc pick as we couldn’t get into the show we planned to see. It ended up being one of my favourites. Mandy’s show is a decidedly dark, but humorous look at her life. A dead Dad, experiences of the care system & abortion don’t seem like immediate funny topics, but she had the audience in stitches. Her suggestion that her husband requesting she iron his shirt was the first step on a slippery slope to spousal abuse spoke to my deep ironing phobia. Her unexpectedly happy ending spoke to the damaged crazy girl in me. Oh & we were sitting next to Alan Davies (our one & only celeb sighting) Dark Knight was a big hit. I’ll absolutely be seeing Mandy Knight again whenever I get the chance. She cuts right to the bone, but it’s the funny one.

ly h Kerr Edinburgh Fringe 2018

Once again we were in a mad rush to find a venue that it turns out was not that far away & on a street I knew well. We discovered that the TB’s sense of direction is not great & neither is my ability to recognise street names. All of which meant we did the thing I dread most; arrived late to an intimate venue. Luckily The Creative Martyrs were kind even though they were dealing with the aftermath of the end of the world. After the Apocalypse was a cabaret style look at how democracy can be subverted. With nods to our current insane political situation & a healthy helping of friendly audience participation. I’m usually terrified of the any attempts to involve me in show, but these guys managed to make it entirely intimidation free. A quirky take on political satire.

After the Apocalypse Fingers Piano Bar

I emerged from the Armageddon bunker excited. Finally it was time for A Beginners Guide to Bondage. I love anything that’s a bit risqué and had been looking forward to this show since first reading about it. Sara Mason AKA Mistress Venita did not disappoint. She has put together an hilarious memoir/how to of her life as a Dominatrix. We squeezed into the tiniest of tiny rooms and learned about various kinks & props. Some brave souls even offered themselves up as apprentice slaves. I believe she is touring this show, if you like a bit of naughty fun see it. This was an hour of my life very well spent.

A Beginners Guide to Bondage

Show planner exhausted I hobbled down another bloody hill to find a place to park my arse. We finished our second day of the festival with drinks to live music in Cowgate. My spoons were seriously depleted, but fun was had & I still managed to look damn cute.