chronic-illness, Disability, Life

Living With a Chronic Illness

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…

*DISCLAIMER POINTS*

  1. 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.
  2. 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?

A flower can’t be in bloom all year round. But, isn’t it beautiful even when it isn’t blooming?
  • 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,

Ella xxx


My Twitter

I use my twitter to try to raise awareness of EDS of if you’d like to feel free to follow:

@theisleofella

 

40 thoughts on “Living With a Chronic Illness”

      1. That’s such an amazing attitude. You’re right its always a good idea to respond to people’s posts even if you’re not quite sure what to say, it’s just nice to connect

        Liked by 1 person

    1. Thank you so much, it’s hard but I just wanted to raise awareness for all the people out there living with a disability/health condition you can’t see xxx

      Liked by 1 person

  1. Looking for more blogs on disability and loved this! Thank you for sharing your story. I have an invisible disability too (visually impaired) and ive had many negative assumptions and judgements over the years because i dont walk around with a white cane, look cross eyed and own a massive pair of sunglasses! It can be very hard but i believe it only shapes us in a positive way x

    Liked by 2 people

    1. I’m so glad that you liked the post! It can be so hard having a condition no one can see and therefore understand. It’s very true, you learn about life and how how to be positive in your own way xxx

      Liked by 1 person

  2. Dear Ella,

    Your post has reminded me of some info I passed on to Mackenzie – you might find it useful too

    Ella Woodward was diagnosed with POTS in her early 20s and eventually managed the disease by changing her diet, to the extent where she’s no longer dependent on medication.

    Her blog about this and the recipes are at https://deliciouslyella.com/

    Hope you had a relaxing Christmas and that things start to work out for you in 2018!

    Best wishes,
    Victoria

    Liked by 2 people

  3. Hi Ella,
    So glad I popped in to see what’s up with you. I can’t even remember how I found your blog, or you found mine, or whatever. But It’s interesting how people who can benefit from knowing each other somehow find each other.

    I’m so glad you wrote this post. I was diagnosed with sarcoidosis last year, and it’s rare and most people just say, “huh?” when I tell them about it. I came to this post after reading your recent “letter to someone I’ll never be.” This is something I’m struggling with. I had perfect health before I had sarcoidosis. Not just good. Perfect. I was strong, flexible, and energetic. There was NOTHING wrong with my body. Not a darned thing. Don’t know how or why I got this disease and it sucks.

    I appreciate the suggestions you’ve made above, as I am always looking for positive things to do to manage my disease, and also, how I think and feel about it. It’s important to stay positive!

    How wonderful that a 49-year-old woman can gain wisdom from a student in university half a world away!

    Thank you and be well. And please keep writing!
    Leila

    Liked by 1 person

    1. Hi Leila, I’m glad that you enjoyed the post and it could help you a bit! It can be so hard thinking about the way your health used to be, but you just have to try to stay in the present. It also really hard when you have a rare condition that people don’t always understand. Thank you very much for reading my posts, I love how blogging lets us connect with people from all over the word! I hope you are well and wish you all the luck in managing your health!

      Like

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