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Fibro, friends, and getting around London in a wheelchair

January 30th, 2019 by Alice Bethan Thomas

Hello! I’m Alice, a freelance writer and editor. And I’m a little bit broken.

Meet my best friend, Pedro. We go everywhere together, it’s like we’re joined at the hip. Or, y’know, the wrist.

Yep. Pedro is my crutch. Its name is Pedro because pied is French for foot and that will tell you all you need to know about my sense of humour.

I started using Pedro to help me cope with the symptoms of fibromyalgia. It’s not considered a degenerative condition, so it shouldn’t get worse, but it also won’t go away. I’ve lessened fibro’s grip on me with some lifestyle changes, medication (thanks Echo!), weekly swimming trips, and mobility aids.

This has made a big difference to the drunk penguin impression I perform every time I walk. I can go further and feel more confident about leaving the house. Extended travel and all-day trips are still an issue, so I also use a wheelchair. This is my new lightweight speedy buddy. It doesn’t have a name yet—current potentials are Royce (Rolls-Royce) and Wheely McWheelface.

My mum first suggested we hire one when we were shopping trip for my wedding dress. I was horrified. Surely I wasn’t sick enough to need one, surely I shouldn’t just give in to the pain and could walk through it. I saw the wheels as a restriction, a setback, a weakness.

Despite some patronising comments from a shop owner, that first trip completely reversed my thinking.

I’m in so much less pain! I don’t feel half as tired as I used to after a day out like that! This is freaking awesome!

Having a wheelchair of my own now means I can say yes to more gatherings, and days out, and travelling further. I can see friends and have fun, without worrying about how many more steps I’ll be able to take.

Last weekend I voyaged to fairest London to meet up with my uni pals for our annual Christmas gathering (yep, in January. We are busy people). Initially, I had decided to just take Pedro, as navigating around London in a wheelchair is not my favourite hobby. My husband Phil put his research skills to good use and found me the quickest, cheapest and least walky route from Waterloo to our Airbnb.

But the more I thought it over, the more the distance worried me. On a good day, I should have been fine, with the promise of a sofa to collapse on at the other end enough of a push to get me there. There was no guarantee that I would be having a good day, however, especially not on the journey back after I had spent the weekend “partying” hard with my crazy friends.

So it seemed that the wheelchair was my safest bet. And as much as I love Pedro, I’m so glad I didn’t take it instead.

Friday. Almost 13:00.

Our journey begins. I finished packing about ten minutes ago. By packing, I mean shoving as much as possible into my backpack because I can’t take my suitcase.

Phil fetches my gilded chariot and with a tote bag swinging from the handles and my backpack balanced on my lap, we set out for the station.

I’m feeling quite on edge today. Along with the normal wheelie anxiety over judgemental strangers or having to face my mortal enemy The Staircase, I have the additional panic of travelling on my own in my wheelchair for the first time. Phil is being his wonderful self and getting me to the train, but I’ll have to get off and through the barriers alone.

My first hurdle is surviving the terror known as Winchester’s streets. Let me just pause this article for a quick PSA to Hampshire County Council, and in fact every council:

Fix. Your. Damn. Pavements.

Every cracked slab, uneven surface, sharp drop, open drain, or any change at all in the surface of the pavement sends juddering vibrations right up my legs. Like a very unfriendly massage. For someone with oversensitivity to pain, this is not a fun experience.

The most hilarious aspect of using a wheelchair is watching your friends trying to control it. Kate has nearly driven me into a bollard. Heather and Lizzi dropped me off the side of the pavement. Heather also got the chair stuck on a curb. Twice.

My dad sent me down a slope. On purpose—he was being “funny”.

And then there’s Phil. Bless him.

He’s relentlessly and beautifully enthusiastic—just ask him about motorsport, or tech, or Jesus, and you’ll see what I mean. It is not such a good thing when this energy is channelled into getting me up pavement curbs as fast as he can. I’ve lost count of the number of times he had rammed me into instead of up them because he hasn’t noticed the lip is larger than he thinks it is. We have discovered the best approach is going backwards. Always.

I’m encouraging Phil as much as possible to use the backwards technique today and it’s mostly been successful. The fact that Winchester is a collection of inclines doesn’t help matters either.

Still Friday. About 13:20.

At the station, the barriers are open so Phil can just roll me on through and take me over the footbridge. I’m spotted by the train staff who ask where I’m going. Disabled access on trains has been a mixed experience for me, but all the interactions I’ve had at Winchester Station have been great. They actually talk to me instead of the person pushing me.

The train arrives and I’m joined in the wheelchair section by another lady. My fears about travelling alone are proven correct when we reach her station and the guard is nowhere to be found, despite him confirming our stops as we left Winchester.

‘Does this ever happen to you?’ she asks me.

I tell her about one late-night trip to the cinema in Eastleigh where Phil ran the entire length of the train in an unsuccessful hunt for the guard.

‘I was lucky I can get out and walk,’ I explain. ‘Has this happened to you before?’

‘All the time,’ she says, as the guard arrives at last and helps her disembark.

Also Friday. Around 14:30.

Fortunately, when I reach London there is someone waiting for me and I zip my way down the platform, rather enjoying the speed of my new chair.

When a family who seemed to have been cryogenically frozen in front of the wider barrier decide to move, I can roll out into the waiting arms of Heather and Anna. Never has there been a more beautiful sight than the two of them frantically waving. Heather seems to have packed lighter than normal, which is a miracle as she usually carries her own bodyweight in luggage.

Dumping a package wrapped in a black rubbish bag on my lap, which she explains is her Secret Santa gift, she pushes me off towards the lift that will take the three of us to Waterloo East.

Once again we are approached by a nice railway worker who wishes to aid us in our quest.

‘Ah, that station doesn’t have disabled access,’ he tells us. ‘The one before it has a lift, though.’

‘Ok, we’ll go there instead,’ we agree.

A minute later he approaches again. ‘I’ve just found out that their lift is broken.’

‘So I’ll have to use the stairs at either station?’

‘Yeah. ’Wonderful.

We decide to head to our original station as it makes little difference now. Stairs are stairs, and for me stairs suck.

Despite our assumption that nice railwayman has radioed ahead, there’s no-one with a handy ramp at the other end. I clamber off the train and wheel up the platform to climb out again and hobble up the stairs.

A stranger wordlessly takes some of our bags and part of the wheelchair to help us up the stairs. Just when I want to be frustrated with the state of the world, there are always unexpected people to prove my negativity wrong.

We were planning to take a bus, but it arrives overflowing with school children. Anna and Heather are unfazed and with them taking it in turns to manoeuvre me along the bike lanes soon we’re on the home stretch.

Finally, we reach our destination and can look out over the Thames from our balcony at the gorgeous sunset tucking itself behind the city skyline, waiting for our remaining party members to join us.

Saturday. Party time!

Miraculously I managed to sleep well. But I can’t jump into festivities straight away—I have to work for two hours. Along with freelance writing and editing, I also teach English online. Working remotely gives me the time and space I need to rest and the freedom to change my schedule if I have to. Except for the teaching bit—that’s very inflexible. So I hole myself away in one of the bedrooms with my penguin puppet for company.

I have the great pleasure of teaching a child named ‘Elsa’ who is about four, dressed as Snow White and spends most of her lesson yelling ‘Harry Potter’ at me because I’m wearing glasses. My other students do not think I’m a fictional wizard.

‘House Christmas’, as we call it, is our own special brand of insanity. Along with a meal foraged from the nearby Tesco Express and perfectly cooked by Anna, Heather, Paige and Matt, and a Secret Santa gift-stealing game, we’ve also opted for playing an RPG together. While it is great fun discovering my Viking character’s weapon of choice is apparently a table leg, it’s a long game. After several hours I notice I’ve been in one position for too long and my legs and back are rather unhappy about it. We move to the sofas to continue the game and I attempt to stretch out my aches with little success.

Sunday. Too early.

My joints make it very clear they were unhappy with my decision to sit for so long in the weird plastic chairs yesterday. I’m not sure how much sleep I get, but it is far less than enough and I feel rough. I’m a fatigued, spacey zombie this morning.

I’m thankful I had the foresight to pack last night because I ain’t feeling it this morning. I then make the equally ridiculous decision that as I am travelling by wheelchair, I’ve got a few spoons to spare and can help pack down the Airbnb by stripping a bed.

People with chronic illnesses or other disabilities sometimes use the Spoon Theory, created by Christine Miserandino, to explain how limited our energy resources can feel. We have limited portions of energy, or ‘spoons’, to spend each day. The smallest of tasks can take them away from us, and running out of them in one day can leave you short the next.

As I finish this task a terrible dread dawns on me as I realise that I will need those spare spoons even if I am in a wheelchair, and I have even less than normal this morning, and I have now spent them. Good call.

In this photo, I am leaning against the balcony, trying to keep the exhaustion from my eyes.

Sunday, about 10:00.

As we leave, I am a lump of misery resting my head on the pile of assorted bags on my lap. Our fast food breakfast pitstop manages to revive some of my mental energy, but not a terrible amount of my physical energy. Once again my group of friends are absolute angels who fight on my behalf against a slope of death (Yass, Matt!) and several roads crowded by aggressively Londonish traffic.

Travelling back means using the same station we’d arrived on, which means once again facing the stairs and the step onto the train. With some help, I win. Just about. With every instance of standing and sitting, I can feel a little more of my depleted energy drain away.

The closer we travelled to the centre of London, the smaller our group becomes as Matt, Paige, Lizzi and Anna headed home in different directions. My train isn’t due for a couple more hours, so Heather, Rachel and I set our sights on the Disney Store.

To reach it, we have to use the dreaded Underground. Mobility issues aside, I’ve always hated the Underground. Accessibility-wise, some lines are better than others. Today we are using the Central Line, and its station at London Bridge even has helpful markers telling disabled passengers which carriage they should use depending on their destination. It’s little touches like this that make me hope that slowly, carefully, things are getting better.

Sunday, almost 15:00.

Heather and I have arrived back at Waterloo, having decided that a short trip to the tiny Lush store is a must. I have forgotten how tiny it is. And it is also as full of shoppers as it is with gorgeous smells.

Despite my pleas that we should turn around and come back in a bit, the lady at the door gently insists that she wants to help me. She brings products to me and gives me some great advice about using their Naked shampoo bars (they’re plastic-free!). When I’ve knocked a big enough chunk in my bank account, she wraps my purchases and brings me a handheld card machine so I can pay at the door.

Gabrielle from Waterloo’s Lush store, you were a shining light in an exhausting day. Thank you for going out of your way to help me.

Heather sees me safe on my train, and our weekend celebrations are at an end.

Back in Winchester, Phil is waiting for me. The rolling home down hills and dodgy pavements is the final hurdle between me and a glorious bath the colour of the evening sky (thanks, Lush!).

I’m sad it’s over, but so, so grateful to have friends and a Phil that see my limitations as stepping stones instead of barriers. They help me remember that pain is not my only definition and I have some very good reasons to not give in to it.

The turning point in my view of wheelchairs came late last year when I happened upon a campaign by disabled activist Annie Segarra. Her hashtag #AmbulatoryWheelchairUsersExist highlighted the existence and the reality of fluid wheelchair users.

Seeing all these people who were like me sharing their stories and pictures made me so much more confident in my validity of needing a wheely friend to get around. I don’t want to be trapped in my house or limited to a bus route or restricted by how long I’m able to enjoy a day out.

Sure, I’m a bit broken, but my life is far from over because of this illness. If I could back in time and tell little anxious fourteen-year-old me about how good life was going to get, I’m sure she wouldn’t believe me.

I get to write and edit for a living—people pay me to do it! I have a ground-floor flat and a garden full of squirrels. I get to be married to the world’s oddest and most delightful human who regularly forgets what he’s supposed to be doing and opts to share useless facts instead.

I get weekends away with several excellent humans. And I’m thankful for the wheelchair that got me there.

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