Livin’ with Advanced Keratoconus
Life with Advanced Keratoconus
Like always, I am glad that you’ve wandered your way back onto the site to yet again indulge in the life of this Island girl living with Keratoconus (KC).
This post is all about my current life with Advanced Keratoconus. If you don’t already know, I’ve had Keratoconus for almost ten years now (October 11, 2020). Grab your snack, wine, juice box, whatever your taste palette is in the mood for, and let’s dive right in.
My life has changed drastically from when I was in a mild stage to advance. It took me a couple of years to actually adjust during the advanced stage. A lot of it had to do with being stuck in denial for a while. Who wouldn’t be in denial?! After finding out that you're somewhat close to being disabled due to the fact that you can’t get around on your own. After some years, I finally took that step to acceptance which led me to make the changes that needed to be made in order for me to live a happier life.
All of my decisions revolve around my eyes; traveling, dating, going out, etc. My only means of sight is through my Scleral Lenses, and I can’t wear them too often nor for too long. I also have to ensure that my eye gets a vast amount of oxygen; i.e time without the lenses while still being awake. My day goes a little like this
6:00 A.M - Wake up, pray, listen to some music
7:00 A.M - Start getting ready; brush my teeth and shower
7:30 A.M - Put my contacts in, then finish getting ready for work.
7:50 A.M - Leave to go to work.
8:00: 5:00 P.M - I work
5:30 - I’ll get home, watch a little TV, exercise, make a meal
7:00 PM - take my contacts out
10:00 PM - Go to bed
So, that’s pretty much my average day. Before I insert my contacts in the mornings, I try to wake up an hour or two before heading to work. Then before bed two-three hours. This is necessary because my eyes do need to breathe. At least once a week I try to spend a day without my contacts.
What I do during the time without my lenses,
There are movies and shows that I ‘ve watched religiously. I can remember every scene, movies / TV-shows such as Scary Movie 1 and 2, Shallow Hall, The Ugly Truth, The Notebook, Sex, and the City, and my all-time favorite “The Golden Girls.” So, I turned them on and just listened. Sometimes I listen to motivational speeches, which really do help. There are a number of things I could do indoors, it’s not as bad as it seems - trusts me.
What’re the rough parts?
There are a few hurdles that I am still working on overcoming such as;
Allowing someone to lead me when I am outside. It’s very hard putting my hands in someone else’s. There’s a certain level of trust that has to be present, then I'll have to wonder if I'm ready to go outdoors, unable to see the world clearly. I fear the increase in my anxiety,
Not being able to dive into a pool of water, drenching my face. It had a moment I stayed away from the beach for years, this was hard because I was living seconds away from the beach, yet I avoided them.
In the beginning, I tried to avoid anything that reminded me of my situation and of the “normal” things I couldn’t do.
Always having to be strong for myself. This can sometimes be exhausting. There are times, I long for someone to waltz into my life, hold me and tell me that I am safe - I can breathe - they’ve got me. Although I'm strong it doesn’t mean that I’m scared. I get scared a lot and there’s nothing wrong with being scared.
On the brighter side, even though I am visually impaired, I have something in which gives me sight for a brief moment. There are a couple of pros,
I found my voice; No longer do I stay hidden in the shadows, scared to share my thoughts, because Keratoconus gave me that confidence to speak up against wrongdoings, sharing every ounce of my experience with the world, and standing up for myself towards people who tell me that the disease isn’t serious and I am being dramatic.
Gaining the appreciation for the little things the universe - God has offered. Before KC I took the little things - moments for granted. I thought it was all about going out, living a lavish lifestyle, having a fancy job, and “partying it up,” yet it’s more than those things. My outlook on life is a lot different. I’ve gained an appreciation for nature; admiring trees and flowers, different animals, carefully paying attention to each detail. You’ll be amazed and how detailed a petal is, the various designs of tree trunks.
I live in the now. I don’t worry about the future because it’s uncertain and unpredictable. I cherish each day and live in the moment.
I grew closer to God. This was/is the cherry on top of the Ice Cream Sundae. During the hardships he’s the reason I am still here, I was able to find my strength and continue to see life positively. I’ve been asked before by non-religious people “If God loves you why did he give you this disease?” At first, I use to ask myself that same question. Why me?! Then it took me a while to come to the realization of it all. His battles are given for specific reasons. The reasons or lessons are normally obtained further down one’s path i.e months or years later you’ll understand why.
Years later I realized I had many reasons for the “Why me?”
It was a way for me to find my strength. If it wasn’t for KC I would never have found my strength.
I no longer took my life and time for granted; I stopped living my life for others and began living it for me and what brought me happiness. If it wasn’t for KC, I would still be at the firm, continuing my daily routine then heading home into my empty apartment wondering why I was constantly feeling empty, as though something was missing from life, when I was living everything I had planned out. My time was spent trying to be good enough to be accepted by society, I failed to be good enough for me. Thanks to KC, at the age of 27 I'm doing the things that make me happy and for once I am proud of myself.
I love more and hate less; with every obstacle and drama I face with KC, I don’t need any more from human beings. I’ve made this abundantly clear to my family and friends, zero drama just positivity, and a lot of laughter.
4. It’s okay to ask for help. For years I felt I was alone and I was too prideful to ask anyone to help me because I thought I could do it all, but I can’t. There are people out there who are willing to help others out and be there for you. Just like me, you also have a choice, you can handle it all your own, but you don’t have to.
There are a lot more Pros, but these for sure are my top, in no particular order. I am satisfied with the life that I am living, however, the adjustment is still a work in progress. I believe that it’ll always be. Nothing in life is perfect and every day is a learning experience. No matter how rough this journey is, it's a blessing because I found myself through it all.
I do recommend joining a support group, everyone there is kind and supports you to the fullest.
Regardless of if you have Keratoconus or another disease, don’t dwell too much on the cons, train your mind to focus on positives because there are some, and try your best to live in the now and not worry about tomorrow. Everything will play outright. How am I so certain about it?! I guess you can call it a hunched. If life led you here, to this post then for sure you’ll be fine.
Disclaimer: For those of you asking if I have plans on doing the corneal transplant; Currently, I am still not mentally ready for it. There are a lot of factors that play into this decision; money, healthcare, the risk. I believe when the time is right and I am up to it then I will make that decision.
If you thought it was already difficult living with advanced Keratoconus, imagine living with it in the Caribbean. Click “Living in the Caribbean with Keratoconus” for the more.
Stay safe Luvs! x
