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Public Transport Excludes 18% of The Public

The thing you need to understand about ambulatory wheelchair users: a wheelchair is not an escape. It does not fix the pain.

We don’t notice how uneven the pavement is, how high curbs are, how narrow so many doorways are, no we really don’t notice half of our surroundings until we try to navigate the world in a wheelchair. We don’t realise that so much of the so-called access we have is not designed by disabled people, but is the bare minimum in imagining what a disabled person might need by able bodied people. 

If you have any form of disability, are neurodivergent, or have sensory issues, you will know what a nightmare being in public spaces is, let alone public transport. With this in mind, for my latest hospital appointment in London my mother and I decided to get hospital transport so I could lie down. Ambulances, ironically, do not feel safe. In the UK lots of them are converted vans, and they are very painful to travel in as they lack suspension. So, unfortunately that did not solve the issues I face when travelling. 

In the hopes of a less stressful journey back, my brother booked us a first class train ticket, only £10 more expensive, but that way I had more hope of being able to lie down and it would be a shorter journey. At the train station we asked the first attendant we saw about a ramp, how to get on board, this is our ticket, she replied with the platform the train would be pulling into and that was it. The second person we spoke to was slightly more helpful, telling us to ask a guard. When we got to the platform and asked the guard, he put down a ramp for us, and the first time the entire trip I felt like something was going right, until we got on board the train and my wheelchair couldn’t fit between the seats to get to the first class compartment where I could lie down. As soon as we asked the guard for help he shrugged and practically ran away whilst saying ‘this is the only compartment I can put the ramp down’. No offer to carry a bag or help carry the wheelchair to the next carriage.

I am an ambulatory wheelchair user, which means I can sometimes walk. At the moment I can only just stand my pain is so excruciating. Leaning on the seats so that my mother could fold up the wheelchair I was shouting to deal with the pain and frustration. How unfair. How ridiculous. Why isn’t the world built for me?! Why is every minute another challenge in every possible way? Even folded up, the wheelchair was too big to fit through the aisle, so, exhausted, after wandering the station to find help, and travelling across London, as well as a torturous hospital appointment, we had to shove it down the aisle of one carriage, and then another, until we finally ended up in the right carriage. Whilst, yes you could argue that the ‘accessible’ seating where I could have just sat in my wheelchair and not travelled to the carriage we had paid for, is what I should have done, what does that say about our view of disabled people? That they don’t deserve to use first class? That they’re not welcome there?

I had been sitting up all day with awful pain, and the is the thing you need to understand about pain and ambulatory wheelchair users: a wheelchair is not an escape. It does not fix the pain. It does not help enough. It simply means I don’t have to walk as much so I can sometimes prevent more symptoms. I can’t even push myself. Being wheeled over cobblestones and grids and being tilted up curbs? It is just as exhausting as walking. After those two days in an unfamiliar environment with rigorous hospital testing, I needed to lie down.

When we arrived at our stop, the guard came and lifted the wheelchair out whilst Mum helped me, and she said on the way out of the station that he had redeemed himself. Yes, I agreed, and then thought about it. No. No he did not redeem himself by doing the bare minimum. That did not make up for his rudeness or lack of concern. And though he may not be responsible, there is no making up for the fact that public transport excludes 18% of the public’s population. 

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Chronic Pain Management

Mangement Strategies? Tips? Help?! For what? Strategies for how to explain to people that I can’t do today what I did yesterday? Tips for keeping calm when a doctor offers to chop off your leg (yes that actually happened) Help for not crying all the time over how much pain you’re in?! MANAGEMENT STRATEGIES?! What do you mean?! There is not one single strategy let alone plural that can manage all these terrible, difficult situations- oh wait. Yes there is.
Breathing.

The only management strategy for anything in life is working on the foundation that sustains us, our breath. It is also the only thing that gives me a chance to get on top of my pain. For the first five years, pre-diagnosis, I had no idea about breath work. Truth be told, I’ve only really become properly good at it since starting yoga this year. It’s a complete game changer. Our natural response when we are put in pain is to tense up, to freeze, but this does the opposite of what we want, rather than stopping the pain it makes it worse. Particularly for EDS, if I can feel a joint sublux, my reaction is what makes the difference between it being out of place several hours or several months. If I can focus on my breathing and relax the joint, I give it a better chance of shifting back in. If I tense up, it is more likely to get stuck and swollen. Equally, if I am to have any hope of not losing my temper in a doctor’s office, I need to rely on my calming breaths. If you have no idea what I’m on about or are curious and want to know more about breathing- do you know how to breathe, really? Do you?- listen to ‘Tranquili-tea’.

Management strategies for POTs and seizures include sprinkling salt on my tongue. It’s a blood pressure thing, I think?

A flare up is a term for chronic pain/ongoing symptoms becoming worse: flaring. My flare ups can look like me being silent (very unusual for me as I’m sure you can imagine!) because I’m so exhausted or not being able to move due to pain (but mentally I’m okay just frustrated-feeling-trapped-with-a-brain-that-wants-to-do-things-my-body-can’t!
On my worst days, it’s both.

Flare ups can be caused by me moving too quickly and subluxing something, or not moving at all and still subluxing something, or subluxing something by moving slightly! I sublux at least twice a day, if you’re not sure what subluxation is, it’s essentially a half dislocation, a joint moves out of place but not enough that you can slide it back in- instead it gets stuck and then swells up so it can’t move back! It’s excruciating! It can last from ten seconds to six weeks, sometimes even longer and it’s pretty annoying and agonising! Aside from subluxations, standing for too long, walking too quickly or for too long a distance, climbing stairs, a seizure, doing too much exercise, doing too little, going to a party for too long or going to a shop where the lighting is too bright- all these can cause a flare up. The one thing that is certain to cause a flare up? Periods. Due to higher levels of progesterone being released, joints become even more lax and thus prone to subluxation.

What does a flare up look like for me, you ask? It looks like nothing.

It looks like any healthy 19 year old girl. Because Ehlers Danlos Syndrome is invisible.

The one tool I wish I was better at using is kindness. Reminding myself I’m on a flare up and that I shouldn’t beat myself up for not doing enough. I usually forget this. My hip will sublux one day and at the end of that week I will think ‘My goodness! Look at how messy your room is! What on earth is wrong with you how lazy can you get-!’ and then, if I am sensible enough to tell them how I’m feeling, my mother or boyfriend or brother will remind me ‘Hey you spent the week in bed in tremendous pain- chill out!!’

Now you might be thinking ‘How can your room get so untidy if you have spent the week in bed, Blossom?’ Well, friend, it’s a skill, and I can’t let you in on all my secrets.

So, the tool I wish I would use more often in a flare up is kindness. If this resonates with you- struggling to be nice to yourself, having high expectations and standards, etc- I’d like to take this opportunity to recommend one of my favourite podcast episodes Relativi-tea I hope it’s helpful.

MY TOOL BOX
– Ice/heat packs
– @Lush Wiccy Magic Muscles Massage Bar (for headaches and muscle pain)
– Magnesium Salt Bath
– Body Pillows
– Comfort Food (hence the lemon meringue pie which I definitely am entirely allergic to but I like the photo, it goes with my theme, and it would be my favourite dessert hehe)
– Cuddles with pets/people
– Distractions

Feel Good TV: FRIENDS, Avatar the Last Airbender

Feel Good Movies: Any Rom-com- I recommend Easy A and Crazy, Stupid, Love. A Studio Ghibli Film, my favourite is Whisper of the Heart. A good Pixar like Ratatouille or Soul
– A good playlist of boppy songs with relatable lyrics
– Gentle, modified, slow Yoga with Adriene on Youtube
– (No caffeine) Tea!!!

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Fear is just Faith you can’t see

This Blog post was inspired by the song ‘Greater than I’ by Kate Walsh. Listen here!

I have been thinking a lot about fear recently. This year has been terrifying. However, all emotions and thoughts have a positive origin because the first priority of our brain is to protect us. This might seem controversial at first but fear is a great example of this. Though we experience it as a negative feeling, fear is actually there to encourage us to be careful, to survive.

Next time you have what you perceive to be a ‘negative thought’, see if you can track it back to its original purpose, see if you can see the other, positive side to it. Try to thank it for protecting you. An example of this for me was telling myself that I was faking my pain. When my symptoms first developed, I had no idea what was going on and nor did anybody else. I was a ten year old being questioned constantly about why I couldn’t do things, by teachers, classmates, family members and even strangers. I was (and still am) in constant pain, struggling to walk, and at the time had little to no understanding of what was happening to me. The thought pattern of ‘it’s not real, I am faking it’ not only enabled me to feel a sense of control over my deteriorating health, but also helped me to push myself to attend school as much as I could (which… wasn’t a lot). The point is, it helped me survive. Even though it is clearly an unhealthy internal monologue, its original purpose was to protect me, and, though I didn’t realise it then, it was successful.

Nevertheless, these negative thoughts haunted me from the ages of 11 to 19, even though they were no longer serving me, my brain was following the groove of a thought pattern that had worked previously. It was only this year, through therapy, when I was able to stop viewing the thoughts as attacks. Instead, I can see them for what they were and are, the only defence mechanisms I knew as a child. I was able to forgive myself for not knowing what to do. Now, I don’t experience the massive internal conflict I had because I realised there was no conflict. All my thoughts have the same intention: to help me survive.

I am now able to understand why my instinct was to blame myself, because nobody else was to blame. The thing is, I wasn’t either. But I can appreciate and actually be grateful that my brain gave me a way out when I had none, no matter how warped it may seem.

Fear. It can be irrational, scary, all encompassing, crippling. But what if we flip the narrative? What if fear is just faith you can’t see? Faith, in yourself, and your ability to survive.

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Society is Dependent on…

Sir Ken Robinson died on 21st of August 2020 and he was one of my first ever heroes… I wanted to share this quote with you in the hopes that you will redefine your definitions of ability and intelligence.

Human communities depend upon a diversity of talent, not a singular conception of ability. And at the heart of the challenge is to reconstitute our sense of ability and intelligence.

Sir Ken Robinson

I want to address something I hear & read about a lot: that disabled people are disposable. Worth less. To say that disabled people are a ‘drain on society’ or resources or taxpayers or whatever else is to say that the success of society is measured by money. In actual fact, the word ‘society’ comes from the Latin socius (companion) and was first found in English in the mid-16th century meaning ‘companionship, friendly association with others.’ Society is thus defined by relationships. Just as everything in life is, really. A plant’s relationship with the sun is essential for its survival. Our relationships with each other is vital for our own wellbeing, as lockdown has taught us all too well.

Therefore, not only is this idea that disabled people are less productive, less capable or less worthy fundamentally untrue, it would also mean that every single one of us is a drain on society. Is a pregnant woman on maternity leave a drain on society because she has stopped working? Absolutely not. What about those who are battling cancer or depression? Both disabling illnesses but not the people you would immediately consider when you hear the term ‘disabled people’. Our capability to love makes us all inherently valuable. Worth is not something you earn or something that can be taken away. We, as disabled people, are no more a drain than anybody else. Given the right access and accommodation, given a society that did not disable us- the empathy, work ethic and fire we possess from being oppressed is one of the most valuable resources on earth!

We are society, so whatever we don’t like about it, we have the power to change. Diversity. Society depends upon us.

This blog post originated from a newsletter I sent out to the Communi-tea a few weeks ago, if you’d like to be the first to hear updates, or want some book, song, & film recommendations gracing your inbox each week, you can sign up here!