The body I live in - 2022 writing:

The body I live in.

Written by Sarah Wingfield / Kawaii Doll Decora  

The rocky terrain keeps making my ankles twist as I find it hard to gain my footing. Why did my body become this clumsy, tight and painful suit I have to carry like a lead weight in this world? Whilst almost everyone around me floats so effortlessly and smoothly through life?

I sigh.

Every step I take creates pain, swelling, tenderness, I don't ever remember doing any sports where I never had earache or pulled muscles, tendons or soreness.

It went unseen for so long, job failure after job failure with no answers to what was making my health as such. I had people looking at me like I'm the same as them and dismissing me for not being able to perform or operate as robotically as them. When in reality I worked much harder than most, liked to keep busy but needed days and days off where I lay in pain or swelling and my body had yet again let me down.

I am disabled.

Those words still hit me hard, like a knife jolted harshly into my chest.

People forget no one wants to be disabled. I like the term differently abled as it suits all disabled people best as there are some with disabilities that allow them to become pro athletes and be amazing, and then there's people like me with pain conditions who can do less than most.

It was something I was born with and had to try and keep up with everyone able bodied around me for as long as I could until *sigh* I just couldn't anymore.

My whole life I've tried.

I've always tried and tried and tried my best with everything I have done and if I'm going to do something it needs to be done properly or I wouldn't feel right about it. So I've always been harder on myself than anyone else ever could, and trust me I've known some dark characters, almost souless in their forms, their actions still haunt my memories daily. So I know how hard I can be on myself.

The spoon theory is something that saved me, a brave girl with Lupis wrote about Lupis and invisible conditions on butyoudontlooksick.com and her words gave me a new voice and a new found freedom of explaining my disability to the world.

But people are so empty with their knowledge and assumptions, they look too closely at people and label and assume and they blind themselves from all the empty areas of that persons life they HAVEN'T thought about or taken into account.

It's so quick and easy for people these days to leave backhanded comments, little sly digs or even patronising advice or pointing things out to try and seem cool, "look at me I can be sarcastic" type of stuff.

But they never stop to think about the bigger picture or what's missing from their very skewed imagination of who you are.

And at the end of the day I'm still the one having to live in my shoes and deal with what I have to deal with.

With all of this technology these days, you'd have thought that the advancement of health would be at the forefront of technology development, but instead secondary houses and collecting collateral seems to be at the forefront of the minds of those with real financial power.

I look at my legs and I urge them to keep going, don't buckle under me now like you have done many a time before, keep going, keep moving and help me build up some mobility so I can gain some more independence and actually start to really experience life. Another wobbly stoned floor and another ankle that's sore.

I want to live.

I often wonder what it would feel like to not feel any pain, maybe I'd feel as if I'd float away, I'd be lighter than air and super fast with super speed because every movement would be so easy.

I daydream of what many of you actually have, and live with and enjoy and take for granted. Bodies that are so easily puppeted by you, bodies that won't betray you, a body that listens to you and just does. It's just acts.

If I try and move my finger sometimes it twitches instead. The ease of communication between my mind and body doesn't exist as yours does. I wish it did.

I know some of you do actually appreciate what you have and don't take it for granted but here I'm speaking to those that don't even bat an eyelid at their mobility and their freedom and their 'ease' of it all.

I feel like I'm wearing a suit of stiff armour some days as I waddle around and it has affected my health and I am no longer the thin lady I was but I'm still me.

Squish and all.

And I write this for all those out there who live as I do, with conditions like Fibromyalgia as well as Hypermobility and Ehlers Danlos etc, for those who often look at the world the same way, feeling the same pain and frustrations like they're weighed down underwater and they have something stupid like ten seconds to run through a few metres of water before their time runs completely out.

We rely on things like public transport and it is hard to try and make it for a certain time due to the way we are and what we deal with. People that aren't like us won't understand the issues we face, the fears, the anxieties, plus not being able to get that extra rest when we'd need it more than most.

Having to make sure we are awake and things much in advance, often atleast four hours before we need to leave our home. Our leaving home time is usually still twenty minutes, sometimes, in advance of any public transport because some times we miss them and it's really hard to walk places some days.

This piece of writing here, is for you, me, us. 

We as individuals with invisible illnesses are not alone in this, even though it can often feel like we are as there are many of us out there, all suffering in the same ways. 

All struggling the same and we should find comfort in that and build good and strong connections with those around us with the capacity and abilities of having some understanding at what we go through, even if they don't have these conditions themselves.

And even if they don't understand it all, it's the willingness to understand that counts. The support and encouragement.

These people are special.

We need to hold on to those as they are good people and we appreciate them. They are important to help us, especially to notice when we are too hard on ourselves and when we do feel guilty about something our body let us down with.

I am mobility impaired, used to be in a wheelchair but I have taken on a tremendous amount of additional pain to be able to walk again.

I don't regret it albeit I do struggle with it.

I need to be kinder to myself and more patient. 

It is definitely easier said than done.

But we are NOT our bodies and we didn't expect this to happen, whether born with it, not diagnosed till later or even developing it later, we have disabilities and we have no choice but to live with them and work around them.

So we need to make sure we have people around us that can do the same.

We go through enough without people making us feel like a problem or burden. We deserve patience and understanding.

So remember, if nothing else today, be kind to yourself and be patient.

You're stronger than you know!

-Written by Sarah Wingfield.

Sarah Wingfield Author 🥀 

-author/artist/creative

21:11hrs Tues 17 May 2022 

@KawaiiDollDecora

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