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Adjusting to life without sound
The true meaning of indomitable spirit
Rare Disease Day 2021
Dear 2020
Draling With Medical Resentment

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justsoelina

☆ Invisible Illness Warrior ☆
Founder @chronicyouthaustralia
Creating heartfelt content
to empower others ♡
💌 contactjustsoelina@gmail.com

⁣”I just want to start off saying I’m sorry,

⁣”I just want to start off saying I’m sorry, I’m sorry for everything that’s happening to you, I’m sorry that for a long time no one but your mum will believe you, when you say something is wrong. And I’m sorry for hating you for so long, It was not you personally but the labels and gossip put on you that I still can’t seem to out run.”⠀
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A few weeks ago I wrote a blog post in honour of EDS awareness month. It was an open letter to my younger self, it gave me the opportunity to say the things I wish I could go back and say. Like apologising for what was about to happen, advice I wish I'd had and forgiveness for how myself and others treated younger me. ⠀
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I knew it would be good to finally get all those feelings out on paper but I never expected it to help me as much as it did. It allowed me to accept and feel more at peace about everything that had happened to me. ⠀
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To anyone that has faced any type of hardship whether as a child or an adult. I cannot reccomemd enoug writing past you a letter. Because you never know what you may be bottling up that needs to be released. -How do you manage your mental health with adversity?

⁣So far in 2020 the world has experienced a lot

⁣So far in 2020 the world has experienced a lot of hardship and hurt. Beginning of the year my country was on fire and the effects were devastating. Soon after the latest news was replaced by COVID - 19 and our world was put on pause/lockdown. ⠀
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Now the world is hurting and fighting for those facing racism. All 3 adversities turned our world upside down, made us feel scared and caused lives to be lost. My heart goes out to all those who have been directly and indirectly affected by those circumstances ❤⠀
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I want you to know I t’s ok to feel scared, to not be sure how to feel or to switch off from the world for a while. You can be aware of issues facing the world without becoming engrossed in them. Self care during these times is so important! ⠀
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And please don’t feel pressured to post or share about it just because everyone is. Your just leaving the space for those educated on the topic to speak out and be heard xx

⁣CHRONIC ILLNESS & FRIENDSHIP⠀ ⠀ Friendship

⁣CHRONIC ILLNESS & FRIENDSHIP⠀
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Friendship has always been a topic I've avoided as I've been too embarrassed to admit that I don't really have close friends around me anymore. Once I had to stop going to school and became bed bound it was like I fell through the cracks and no one really noticed. A few people resurfaced but by then I was in the middle of moving to Cairns. ⠀🏡🏝
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I had a plan, get better medical help so I could go to school and make amazing friends. That plan quickly fell apart as my health continued to decline. I then realised that there really isn't any social options when you can’t play sport or dance. Even parties and going shopping was out of the question. ⠀
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I feel like a loser when I look at my social media and constantly worry what others think as you won't see any photos of me with lots of friends, going go festivals or having girls nights. You will just see me working on projects to keep myself busy. ⠀📸✨
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But someone reminded me recently that I'm not the only one dealing with adversity isolation. So many teens and young adults, chronically ill and abled bodied are in the same place I'm in. ⠀
Feeling ashamed about something that is completely out of our control.

⁣A MISCONCEPTION ABOUT EDS⠀ *Disclaimer this p

⁣A MISCONCEPTION ABOUT EDS⠀
*Disclaimer this post is to spread awareness about the different forms of hypermobility, not to show off a ”party trick”*⠀
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The biggest misonception I've found is that you have to be overly flexible to have EDS. Ehlers Danlos Syndrome currently has 13 known types. Each come with their own list of symptoms and not all include hypermobility..⠀
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When EDS was first brought up to me by a pain specialist I went to my doctor about it, she asked me if I was overly flexible, I asked what she meant specifically and she said can I do the spilts etc easily. I just laughed and said I was the least flexible person there was.⠀😂
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I was diagnosed a year later with Hypermobile EDS. Hypermobility has many different forms, some can contort their body in crazy ways, or nave overly flexible and loose joints, others have organs that are affected by hypermobility like their heart and stomach.⠀❤️
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No matter how much I stretched I could never do the spilts, but my hands, back, neck, fingers, ankles and shoulders are very hypermobile But again that is just me personally, no zebra has the same stripes as another.⠀
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The medical system can be very black and white (excuse the pun) about EDS and its still a very misunderstood condition. Most medical professionals that aren't educated on EDS will look at the basic symptoms, but those only cover a percentage of the EDS community.⠀🦓💕
More education is needed to understand the full length of this condition. Awareness is key!

SYMPTOMS & DIAGNOSES ⠀ Getting a diagnosis was v

SYMPTOMS & DIAGNOSES ⠀
Getting a diagnosis was very difficult ,because I had all these symptoms that didnt just point to one thing and thats because it wasnt. Hypermobile Ehlers Danlos Syndrome or hEDS effects every part of my life and body, it also has comorbiditoes that can come along with it to make life just that bit more tricky. I was finally diagnosed after 9 years of unknwon, at the beginning of the year by a rehumotologist.⠀🦓✨ ⠀
I also have chronic neutropenia (low white bood cells) and am currently in the process of being diagnosed with ME (chronic fatique syndrome) and Mast Cell Activation. ⠀
Because of that not all of my symtoms are caused by my EDS but are realted to. On the daily I experince: ⠀
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~ Daily subluxations and sometimes dislocations⠀
~ Server stomach issues that means constant nausea and sever pain when eating⠀
~ Chronic Pain and over sensitivity⠀
~ Skin that dsoent heal well and brusies easily⠀
~ Low blood pressure and tachicardia⠀
~ Constantly dizzy and faint⠀
~ Sever fatigue and brain fog⠀
~ Alergies and chemical sesnsitivities ⠀
~ Constant fight or flight response ⠀
~ No temprature control or regualtion ⠀
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hEDS and its comorbities affect everyone differntly, no one person is the same as another. There is various scales, some people can live out their life and barely eb affected by it, others loose all ability to function. Personally I’m some where in the middle. ⠀💛🦋
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⁣This month is Ehlers Danlos Awareness month. Fo

⁣This month is Ehlers Danlos Awareness month. For those who don’t know - Hi I’m Elina, a 17 year old Australian teen who happens to have hypermobile Ehlers Danlos Syndrome aka hEDS. A rare genetic condition that effects every aspect and system in my body, but that wasnt always the case. 🦓❤⠀
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When I was little I was an active and pretty average kid minus a few odd symtoms. It wasn’t until I was eight and got an unknown virus that hEDS begun to show itself and continued to become more prominent after a bad horse accident.⠀
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Once hormones decided to kick in I quickly became bed bound, my world became my bedroom for over 2 years. In the time teens are exploring their new found freedom, i was losing mine. That is when I discovered my passion for blogging, writing became my escape but eventually also my outlet to deal with my new normal.⠀
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My new normal is definitely not what I would have ever expected for my life, but I’m trying to make the most out of it. I am now an advocate for the chronic illness community, work with an incredible charity @invisiyouth and get to work on my own projects like @chronicyouthaustralia. It gives me a reason to get out of bed each day and a sense of purpose within the day to day craziness. 💛🌻 ⠀
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Video created by the incredible @iamlaurapena ❤✨

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