I was apprehensive about making this post. I said to myself “I’ll do it if I ever get to 50 Followers”. When the reality is, I could have done it even if I had 0. I realised awareness happens when anyone shares a story and takes action. So, here I am sharing mine…
- I’m obviously not a professional who can professionally advise, I’m just sharing my story in the hope to raise awareness. Also, I may have simplified things a bit on the biology side, but trust me I’ve done a lot of research.
- I’m not looking for sympathy, I just want awareness.
I have Ehlers-Danlos Syndrome (EDS)- Hypermobile Type.
What Is It?
It’s a genetic condition that affects the connective tissue in the body. Basically, my connective tissue (collagen) is really stretchy. But, it’s a disability that is mostly invisible. However, some people need to use a wheelchair to get around.
How Does it Effect Me?
- I live with chronic pain because my ligaments can’t hold my joints in place properly, I get moderate-severe joint pain. For me, it kind of flares up then goes down, it can be pretty debilitating.
- I’m affected by another condition called Postural Orthostatic Tachycardia Syndrome (PoTS). This makes me sick, especially in the mornings, or if I get up too fast, which is really hard sometimes.
- It makes it hard to sleep, I’ve suffered from insomnia and still do on some occasions, I’ve lied awake for hours uncomfortable and in pain.
- I have chronic fatigue. I’m tired a lot of the time. I often take naps and struggle to get up early, which is hard at University. It is not the same as someone who simply stays up late and then feels tired.
How do I Stay Positive?
- Support, Support, Support. Online can be great! But, more importantly, real-life support. My family and friends are hugely supportive. This is honestly one of the biggest things you need in life! The blogging community can provide this too if your friends/family just don’t seem to ‘get it’ reaching out to other people online may help, or find a local support group.
- Accepting when I feel low: positivity to me is not always being happy. It’s accepting feelings as they come and go, allowing myself to feel angry, sad and pretty depressed at times, but then making little steps in the right direction.
- Passion: I’m enthusiastic about a lot of things. Luckily, I can quickly get excited about the things I love. This is important, just because things are harder for me, doesn’t mean that I don’t do what I can. I am focusing on my art and photography as an outlet now.
- Prioritising Me: This is different from being selfish, prioritising yourself means asking: “Can I do this?”, “Do I want to put energy to this?”, “Is this meaningful to me?”, “When do I need a break?”.
These are in my opinion, just general self-care tips for anyone, but if you have a disability, mental health condition or long-term health condition, self-care is even more critical.
Also, a HUGE shoutout to Mackenzie from- lifewithanillnesss.com
Her blog has really helped me and she even personally went out of her way to help me with writing my first blog post about EDS. She didn’t have to but she did, that’s pretty amazing!
Thank you so much for your support,
I use my twitter to try to raise awareness of EDS of if you’d like to feel free to follow: