The Reality of Retinitis Pigmentosa & Chronic Fatigue Syndrome – Guest Post by Elin

Elin’s guest post is the 13th post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Elin!

Hello! I’m Elin, a 20-year-old disability and lifestyle blogger and Open University student from North Wales. You’ll most likely find me tapping away at my laptop, either working on a blog post or an upcoming uni assignment, scrolling through the new-in sections of clothing websites (making a few unnecessary purchases for my wardrobe), listening to music or living my best life at a concert.

My Story

I’m a really positive person but despite that positivity, I’ve had to overcome a lot of challenges in my life, a lot of which have been caused because of my disability and chronic illness. I’ve learned to accept my disabilities in the last few years and part of that acceptance is thanks to strength I’ve gained and the amazing people I’ve met through blogging. I’d now consider myself to be an advocate for vision impairment, trying my best to raise awareness and help others who are in a similar situation.

Retinitis Pigmentosa

My longest running challenge is the eye disease I’ve been living with for the most part of my life. My parents realised I couldn’t see in the dark when I was three years old and after a countless amount of visits to the hospital and hundreds of tests, I was finally diagnosed with the degenerative condition, Retinitis Pigmentosa (RP), three years later when I was six years old.

RP affects everyone in different ways, it’s like a massive umbrella with all kinds of different variations hiding underneath.

For me, everything I see is extremely blurred, even more so now than a few years ago. I like to describe my vision as a camera that is constantly out of focus and that focus is deteriorating everyday. I can see colours, lights and shapes but no detail.

My vision impairment has brought a fresh set of challenges to my door on more than one occasion, it meant that I was an easy target for bullies at school, it made me feel lonely and isolated and sight loss has also played a part in my anxiety, some situations where I feel vulnerable even leading to panic attacks.

I talk about these challenges a lot over on my blog, I never gloss over any that I face but I also try my best to look at the positives and live my life as normal as I possibly can. I definitely feel like sight loss is holding me back sometimes but I try to embrace the quirks it gives me and try to speak as openly about it as I can both on and offline in the hope of helping others but also helping myself by noting my feelings down and getting them out of my system.

Chronic Fatigue Syndrome/M.E

I was diagnosed with chronic fatigue a few years ago when I was 16 and it’s safe to saythat living with the condition hasn’t been easy.

Many symptoms can manifest themselves due to chronic fatigue and of course it varies for everyone. For me, it can leave me feeling absolutely exhausted, it’s not your typical bout of tiredness after one too many late nights, it’s debilitating and brings a lot of other symptoms with it.

Light headedness and extreme weakness are two other common symptoms for me and I’ve been known to faint quite often because of it. I’d like to think that I’ve reached a point of being able to acknowledge what kind of situations will cause a flare up but they’re not something that can be avoided easily so I have to take it easy, even on my good days.

During a flare up, it can be a struggle to pick up my phone and type a text, the illness has stopped me from going out with friends, going for days out with my family and so many other things that triggered the feeling of loneliness and isolation for me.

Learning To Adapt

I’ve learned a few ways of adapting and I’m incredibly lucky that my family and friends are willing to change plans if needs must. I try not to push myself too hard on my good days because I know it could leave me bed-bound on the next and I feel more confident now in suggesting a catch up with my friends at home rather than going out somewhere if I don’t feel up to it.

Have My Disabilities Changed Me?

Of course but not in a bad way. I used to stand by the mantra that ‘my disability doesn’t define me’ and although there are moments when I’d still like to think that, it does contribute to the person I am and I’ve learned to become proud of that, especially when it comes to my vision impairment.

The things I live with do present challenges, of course they do but when it comes to sight loss in particular, I do think it can have a positive impact and it’s helped to shape my life for the better in some cases.

My Favourite Superheroes

Hmmm, can I say two of my closest friends? They’re both superheroes to me because of all the challenges they’ve overcome and how they’ve become stronger because of them. They’re strong, courageous, funny, brave, inspiring, the list– could go on! But I consider myself very lucky to have them in my life because they always have my back and always encourage me to believe in myself and what I do.

Thanks Elin for sharing your story with my readers and me!

If you would like to stay up to date with Elin, then you can follow her blog, My Blurred World, Twitter, Facebook and Instagram!

10 Comments

  1. This is an inspiring post, Elin, and thank you for sharing it with us. I had never heard of RP before so you have educated me today. I had a friend with M.E. also and it totally floored him at times so understand how debilitating this must be. Your attitude is amazing in the way you keep going and don’t let your conditions get you down. A true inspiration to others and so lovely that you feel your close friends are your “super-heroes”, I love that! All the best for the future. x 🙂

    Liked by 1 person

  2. You are both incredibly brave and awesome ladies ❤️ I’ve heard of RP after working in an Opticians for 5 years but never in much detail, so thank you for bringing some awareness to it. You have such a positive outlook and its absolutely inspiring! Wishing you both all the best and am loving these blogs! Xx

    Liked by 1 person

  3. Thanks for sharing this lovely girls story. I had never heard of this condition before. I can’t imagine how difficult it must be living with multiple conditions but it was lovely to read such positive words. I wish you all the best and thanks for making me aware of both illnesses xx

    Liked by 1 person

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