The End of an Era.

Lounging in my bed at 9pm embarking upon another season of “Jane The Virgin” whilst I find every excuse possible to distract myself from what I really should be doing, packing, I decided to write a blog. I initially started writing about futile things such as clothes, but another subject plagued my mind.
You see in 2 days, although by the time I’ve edited and published this it’ll likely be less than 24 hours, I am moving house. Okay that makes it sound a lot more exciting than it actually is, I am really moving all of my millions of clothes into a tiny room situated in a student accommodation block in Bath. That’s right ladies and gentlefeathers, this girl’s going to uni!
“Yaaay” I hear you exclaim! And if you’re not then, well, rude. Get the shots going, it’s time to celebrate! Your uni years are the best of your life!

Then answer me this: why I have I never before been so terrified?

Nerves are normal. I get it. But for the past few weeks I’ve hardly slept a wink, constant fears engulfing my brain like an over flowing river bursting its banks. What if I get ill? What if I end up in hospital? What if no one likes me because I’m the ‘sick girl’? What if my body can’t take it?

What if I don’t fit in?

Y’see, being ill is a bit shit. I’ve been talking to a few people and I find myself constantly trying to hide my illness, then the thought of having to tell them fills me with this intoxicating fear that stops me from being able to see straight. I feel like I have to tell them, I mean I owe them the opportunity to walk away right? Always trying to make out like it’s not a big deal so people will stick around. But you know what? It’s a fucking big deal! Not in a way that makes me weird or un trustworthy, just in a way that its existence has completely changed the path of my life, like a tornado ripping through a town changing its entire being forever. I have changed.

The past three years have been, well I hate to be cliché but a rollercoaster.
I’ve had endless heartache, pain, paralysing fear, hospital admissions, fight after fight with my own body to just survive. But I’ve also had some of the most amazing, happy and beautiful moments I could have ever wished for. I made friends. Like real friends for life friends who never once judged me, they always asked how I was and were happy to just sit and listen when things got tough. They celebrated the victories, not matter how small. Like when I went from seeing my consultant bi-weekly to once a month. Or when I went from living off of meal replacement drinks to my first bite of solid food in a year. I’d never quite experienced people who love me for me no matter what my health or status. People who are not just my friends but my family. People who accepted me. People who watched and helped me grow from a scared little girl into an ambitious young woman who has the world at her feet and the determination to take her to the stars. People who I will love and cherish forever (APT I’m talking to you!)

The truth is I’m not just scared to start university because of my illness, I’m scared because of what I’m leaving behind. I’ve never really had friends. Well I’ve had friends, but not friends who have really stuck by me when the going gets tough (bar a few). But in the last three years I’ve gone from feeling worthless, like anyone who sticks around I owe the world to so it doesn’t matter if they walk all over me and make me feel horrific because I deserve it. After all they’ve done me a favour for sticking around and being my “friend”. To realising that I am SO much more than my illness and I am worth so much more than people who only want to be around me for their own ego and attempt at being heroic, so they can say they were friends with “that sick girl”.

Now I’ve finally become comfortable with my life, I’m not as ill as I once was and, for the first time in a long time, I am happy. I’d got into a routine which was comfortable, living in a house that was comfortable, earning money that was comfortable and being with people who I felt comfortable with. Changing that all up when that very comfort is all that you’ve craved for god knows how many years is pretty damn terrifying!

But then I think back to three years ago, lying in a hospital bed in London, crying in the arms of a consultant who by simply saying, “It’s not going to be easy from here on out, but you’re going to be okay” seemed to change the trajectory of my life. I thought maybe my dreams weren’t futile and that maybe, just maybe I will one day have a life again. And who knows, maybe I will be able to go to university after all?

So am I scared? Yes. But I owe it to myself to not back out now, to man the hell up and just go. Change is scary for everyone and change is particularly blood curdlingly terrifying for someone who’s constantly balancing on a line between hospital admission inducing multi organ failure and living. But you know what dear readers? I’ve got this.

Wednesday the 20th of September 2017 marks the end of an era. But also the beginning of a new one which I sure as hell will make worth remembering.

Watch out world, this girls got her fight back.

x

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An open letter to the doctors at the emergency department

Whilst curled up on the waiting room chair at 1am dipping in and out of sleep, consumed with pain and nausea so much so I could hardly breathe. My ears were overwhelmed with the loud muttering of machines reading the internal wellness of the vulnerable human’s laid there to recover. Patients sat across from me filling in complaint forms about their wait times, negative after negative about their hospital experience. “I’ve been waiting 5 hours, I need to go home” they’d say. Nurses and doctor’s all running around not once having the luxury of sitting down, coming to the end of their 13 hour shifts not one note of resentment or frustration escaped in their voices. “I am very sorry, we are just very busy tonight.” In reply to the angry voices of the people they are doing their best to help.

The first few hours of my experience that night I do not remember. I was so dehydrated from a combination of digestive tract dysmotility, meaning I have to take medication to make my digestive system move as it is unable to do so on its own, and a stomach bug causing the perfect storm.
As you may or may not have guessed, I am chronically ill. I have a rare condition called Ehlers-Danlos Syndrome(EDS) and an autonomic nervous system disorder called Postural Orthostatic Tachycardia Syndrome (POTS) meaning my body cannot control its automatic functions. I don’t get, what I like to call, ‘normal people’ sick very often. But when I do I can go downhill very quickly at an uncontrollable rate. I can’t control my body temperature, I get violently sick and my whole body shakes with the effort to stay conscious.

Naturally, being chronically ill I have had many contrasting experiences of health care along the route to getting my diagnosis’. There’s been doctor’s who don’t listen, doctor’s who don’t understand and doctor’s who are just as confused and frustrated as I have been. It is also very difficult to know what my ‘normal’ is and when I need to go to the emergency department. The anxiety of ‘but I don’t want to be told I’m wasting time’ constantly running through your head. But ultimately what shines through the most are the doctors who may not understand, may be confused by my complexities but who still put every effort they can into making my life as comfortable and healthy as possible. Doctors and healthcare professionals like the one’s I met that night.

When I started to be aware of my surroundings again I never once felt rushed or disbelieved, time was made for me to explain and have my say about my health and treatment, which was difficult due to the dehydration and fatigue. The nurses made me laugh and helped cheer me up after what was quite a traumatic flare up of my disability. Doctor’s seeing me very regularly just to check that I was okay and recovering well. Even when I wasn’t aware of what was going on my mother informed me that they treated me with the utmost respect, asking about my chronic conditions and doing all they could to make me feel better. Never once making me feel like a time waster or embarrassed, because let’s be honest talking about your digestive system (i.e. poo) is never the most glamorous of things!

So this is an open letter to everyone who looked after me those few days in hospital. Thank you for doing the best you could in a system that doesn’t respect you enough, to make me feel better. You were all wonderful, despite undue criticism about things completely out of your control. You never once got frustrated or angry; you kept your cool, made us laugh and made what could have so easily been a traumatic experience for me into a calm one. Thank you for the work you have done and will continue to do. You’re all wonderful. And I don’t think you hear it enough.

Thank you,

Erika Bohling.

The Things No One Tells You About Training.

We are constantly inundated with stories of how people went from couch to half marathon in 10 weeks, training programs described as, “one size fits all” promising progress without set backs. Miracle pills and diets, detox’s that aid recovery and boost performance. Drinks that claim to refuel and re-fill without the diet no go’s such as fat and carbs (which you actually need by the way!!).

No.

Every person is different and every persons body reacts differently to different training programs and regimes. Something that may work wonderfully for one person may be next to useless to you just because your body doesn’t tolerate it. Some people can get away with doing minimal training and others have to work their fingers (or trainers) to the bone to see any results.

I came into this half marathon world a little naively, although exercise has been a key part of my life for years I had never really trained for anything. I thought I could search a half marathon training plan on the internet, do exactly as it said and relish in the results it promised. But boy was I wrong!
To be fair I have added difficulties with being chronically ill, however after doing this “one size fits all” training program for 5 weeks I realised it was just not working for me. A little disheartened I decided to take a break, revert back to my normal strengthening and cardio routines and work on building strength and stamina. Then with a whole new lease of life, and a new perspective, I decided to give it another go.

I searched for real life stories of people’s training programs. No. Training journeys. None of this “I have won 3284045632 marathons, my training program is the only one that works.” I realised that training is not just something you can set time aside for every week to do, it is a 24 hour 7 day a week journey. It starts the minute you wake up and ends the minute you go to sleep. It involves pacing, food, prioritizing, planning and most importantly listening to your body. I realised that if one day your sore, tired and your body is begging you to stop then to listen. You don’t have to go on that 13 mile run (not that I am there yet) because it was in your schedule. This is particularly relevant to me, some days I can feel relatively okay and other days I am so fatigued, sick and in so much pain that I can not physically get out of bed. These days are the days you need to rest, relax and be proud of what you are doing.

I realised that you need to treat your body and mind with respect, try new things but don’t be too hard on your self if something doesn’t work.

The only way to find the perfect training program for you is to experiment. Play around with different exercises and routines, see what you enjoy and what helps you progress. Switch it up! Don’t always think you have to run and only run, to be the best you can you need to strengthen that core!

Most importantly I have realised it is okay if the only exercise you get today is to breathe. Your mind and soul need love and respect just like the rest of you.

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An open letter to those who complain about being at university.

University.

A hub for learning, stress, creativity and life lessons. A place where thousands of people, young and old, embark upon a new journey of knowledge, understanding and life lessons each year. For some it is a journey that fulfills a life long desire to embark upon a career they’ve always dreamed of, for some it is a game changer enabling the learner to understand their chosen degree is not what they really want to do. And for some it is an excuse for partying hard and lie ins, temporarily forgetting they have a degree to study for until a mere matter of days before final exams.

However for all of these people, it is a choice.

There are many people throughout the world who do not have that choice.

Despite living in the 21st century it is still illegal or socially unacceptable in some countries for women to go to school. According to the United Nations Educational, Scientific and Cultural Organisation “An estimated 122 million youth globally are illiterate, of which young women represent 60.7%(UN stat’s on literacy) Many well known terror groups openly deny and fight for the right for education to be taken away from women. Even more harrowing is that hundred’s of thousands of women die or are seriously injured fighting for this right. History is rich with many stories of well known and influential women fighting for their rights, but injuries and death as a result of this are still prominent in today’s world. A well known example of this is the magnificent Malala Yousafzai, a beautiful and brave women who was shot in the head whilst on her way to school in Pakistan.

Then there are people who are physically unable to go to mainstream school or college due to disability who are either not given the funding to go to an appropriate educational setting or do not even have the access to an appropriate educational setting in the first place.

Then there are the people who I speak to every day, the people who would give anything to be able to go to university, to further their career or even have a level of education necessary to have a job accessible to them. The person I was for 3 years.

When I finished college I was far too ill to go to University -something I had planned for years to achieve. I saw all my friends packing their bags ready to embark upon this spectacular journey that, for better or worse, would change who they were. It would help shape their future and at least offer them ample life experience, at best offering them a degree and the ability to travel the path of their chosen career. What made this pain a whole lot worse for me and people like me is that we’d be inundated with stories of people taking the opportunity to further their education for granted, people who’d complain endlessly about anything and everything. People who would not bother turning up to lectures or who would spend their whole educational time and money drinking and partying. People who just didn’t care.

Don’t get me wrong, I fully understand that the social aspect of university is just as important as the educational aspect. I know it isn’t always all that you thought it would be. I know it is far from perfect. I know it can be hard, grueling and many people are left disappointed and confused in their third year, overcome with stress because their degree isn’t offering them the career and opportunities they thought it would. If you are one of these people stuck in an educational system rut I completely and whole heatedly sympathize with you.

My point, however, is that you had a choice. You had the opportunity to go to university in the first place. An opportunity many people do not have.

I am delighted that I have managed to work towards stabilizing my health and have received an offer from my first choice university to study for a BSc in Psychology next year, however I will never forget that there are thousands, potentially millions of people out there who for cultural or personal reasons do not have a choice.

Half Marathon and Me

I’m going to run a half marathon.
“Yeah right, you run?”
Yes, why is that funny?
“Because you’re chronically ill. Sick people can’t do sport.”

“Oh can’t they?” I say, eagerly pulling on my trainers ready for another multi terrain, 11 mile training session in the wind and rain. “You just watch me.”

My name is Erika Bohling, I am 20 years old and live in the Cotswolds. I have brown wavy hair and blue eyes. I am 5ft6. I love music, dancing and being outdoors.

I am also chronically ill.

I have Ehlers-Danlos Syndrome (EDS), a multi systemic genetic connective tissue disease, and Postural Orthostatic Tachycardia Syndrome (PoTS) meaning my body can not control my autonomic nervousystem.
When I was 12 I was also diagnosed with severe Complex Regional Pain Syndrome (CRPS). It had taken control of all four of my limbs, rendering them useless. I was told that if I were to not successfully fight the condition that I would never walk again.

In June 2017 I will be running a half marathon in aid of the wonderful charity Scope.

A half marathon for me will be an extremely tough journey. Training with an illness will be hard. And I don’t mean it’ll just be a little tiring, I mean mentally and physically one of the toughest things I will ever do. Let me put it into perspective…

When you are walking down the street, shopping, getting on a bus, having coffee with friends, are you consciously trying to prevent your joints from dislocating? Are you thinking about what you can do to stop your heart beating at 160bpm because you’ve been stood up for more than 15 minutes? Are you thinking about how much time you can spend out of the house before you are overcome with paralyzing fatigue? Are you thinking about whether you can eat anything or not just encase your digestive system decides it won’t work today? Are you thinking about whether you have enough money in your bank to afford your medication that month?

No?

Well these are just a few of the things I have to think about every single day, just to live a relatively “normal” life. So throw a half marathon into the mix and it multiplies these issues by 100.

So, why do it then?

Good question!

I have grown up in a society where disability and illness are a taboo. A vast majority of people assume that illness and/or disability mean you can no longer live a fulfilling life and that you definitely can’t do sport. This made life growing up with a disability hard for me, and even more so when I fell really ill two years ago. I believed that my life was over, that I could no longer be successful or happy and that I could definitely not do sport.

The wonderful work from all of the athletes in the Paralympics has really done a lot to improve public perception of what a person with a disability can do. But we STILL get people saying to us that we “can’t do sport”. The conversation I started this blog post with is a genuine conversation I had with someone.

So I am determined to do this half marathon! Training will be hard for me, I know that. I also know that there will be times that my health will go downhill, I will be scared, upset, and angry and want to give up. There will be days when I will think it is impossible.

But I will remember what that person said to me. And I will remember the little girl with down syndrome I used to teach dance to and the many other disabled children out there with so much passion, enthusiasm and raw talent. And I will do it for them. So that they can grow up knowing that just because you may be disabled or chronically ill it doesn’t mean you can’t do something.. Just that you may have to do it in a different way.

I will be blogging throughout my journey in an attempt to highlight the highs and lows of training whilst being ill. I will be raw and honest, open about the extra barriers I face but also about how it is possible and how rewarding it will be.

Thank you for reading my story, you can donate here.

Have a beautiful day!

-Erika.x

https://www.justgiving.com/fundraising/erika-bohling

Why ‘society’ and I will never get along.

Society.

It is an odd thing.

A compilation of pressures, wonders, praise and criticism highlighting the good, the bad and the ugly of our every day lives.
Some are lucky enough to not have a care in the world to the societal pressures placed upon us daily, and others care so much that they fall into a dark cycle of following the script forced upon us by the uppermost beings on the social ladder and feeling inadequate if they do not fit neatly into that box..

And then there’s me. wavering around somewhere in the middle.

I like to think I’m a confident, brave and intelligent young woman who, the majority of the time, has no care as to what is socially expected of me.
But the one thing I can not and never will accept in western society is the absolute obsession with body image.

obsession: an idea or thought that continually preoccupies or intrudes on a person’s mind.

We are so preoccupied by our physical appearance that we fail to acknowledge and celebrate our individual achievements, quirks and successes. Our accomplishments in life seem void if we do not possess the body of a God.

I hate that at 12 years old I learnt to walk again after being told by doctors I would never re-gain the use of my arms and legs yet I’m still socially defined by what I see in the mirror.
I hate that I work tirelessly to help the community yet I am still told I’m worthless if my waist is not the correct circumference.
I hate that I live a life of defying the odds yet still I am told I’m not good enough because of the way I look.
I hate the fact that I’ve achieved incredible things in my life yet still I am told I’m irrelevant if I do not look a certain way.

What I hate the most is that I know I am not alone.

The reason we are made to feel this way is because our physical appearance is the first thing someone sees about us.
But the fact is every single person has a story. A story not obvious via their physical appearance.

We need the powerful influences of the world to help re-program our brains into not defining someone by their appearance.
The media, magazines, news channels, everyone needs to start celebrating the achievements a person has made. Commenting on their successes first instead of their ‘fashion fails’ or their ‘acne’.

But the only way it is going to change is if we start with ourselves.
And it is really very simple.

Be. Kind.

When you see someone on the street, at the very least do not make snide remarks. Instead pay them a compliment. Tell them how they look wonderful today. Tell them how they’re glowing from the inside. And tell them that they are so much more than the way they look.

Because, you see, that’s what it boils down to.

And after all, there are far worse things to be in this world than fat.

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The Paralympics and me.

Unless you have been living under a rock recently you must already be aware of the outstanding performance at the Paralympics from team GB, ultimately leaving many inspired, in awe and utterly overwhelmed with pride at what these incredible sports men and women have achieved.

However for me the Paralympics has helped me on a more personal level.

Growing up with disability I was always under the impression that sport and me couldn’t be friends. There was no inclusivity in my area and ultimately there were very few well publicized disabled role models in and outside of sport. As a very ambitious child transitioning into a young women I have even felt fearful at times that, because of disability, my future may succumb to little more than being on my own ticking off the days as they pass me by.

Not anymore.

Sat here staring at my computer screen at 11pm on a Monday night with a trusty cup of earl grey I can honestly say I am no longer scared.

I am no longer scared that my future will be unsuccessful.
I am no longer scared that I will end up alone.
and I am no longer scared that disability will define me.

Sincerely,

A girl determined to reach the stars.
x