This isn’t one of my usual posts in that it won’t focus on IBD or my stoma but I thought it’s time I wrote something about what I’ve been going through these past few weeks and months. I’m all about raising awareness so here goes.
I haven’t really mentioned this before but one reason why posts are usually late is because I live in a weird world, flitting between near-perfect vision and times when I can’t see a thing and would be legally classed as blind if it wasn’t for the days when I CAN see well. Confused? So are most people who can’t understand why I didn’t recognise them when I walked into the room when I could see them perfectly fine the day before!
I was diagnosed with a condition called Keratoconus around 11 years ago, at the age of 14. My vision was steadily getting worse and I was getting new glasses every few months and even then, I wouldn’t be able to see properly. Everything was just so blurry!
So what is Keratoconus?
“The name literally means “conical or cone-shaped cornea” and rarely appears until puberty or older. In keratoconus the cornea becomes stretched and thins at its centre, and the thinned part of the cornea bulges making the vision more shortsighted and irregular. As a result the vision is distorted.”
In other words, my eye is rather pointy instead of being round, when looking from the side. This affects the way light enters the eye. It goes in all directions, hitting parts it has no business hitting so my eyes are extra sensitive to light. It also distorts the vision.
There are some great pics over as well as info on this website which helps to explain everything.
Here are a few, my eyes were probably at this stage a few years ago. It’s a lot worse now.
I attended boarding school at a time when I wasn’t at a great stage with my eyes. Glasses didn’t work for me (because of the shape of my cornea) and it took a while to be set up with new doctors and be referred to the hospital. Then it took a while to be referred to a contact lens specialist.
So there I was at school, unable to go out on my own at night, treading everywhere carefully in case I fell flat on my face and generally getting by. I’d be lying if I said it didn’t bother me. One memory sticks out.. Cleaning the dining room one day, I picked up a dustpan and went to empty it into what I thought was a black bin bag. Imagine my surprise when the ‘bin bag’ moved away just as I was about to tip the rubbish out! Seems I was about to tip it onto someone’s head – she was wearing all black and I really couldn’t tell the difference! It took a while for three of us to explain that it wasn’t a practical joke and I hadn’t intended to cover her with dust! Not all moments were humorous – I was abroad one year and didn’t see a small step, so I tripped and fell. I was in a lot of pain, couldn’t walk for a while and had to rest. Turns out I’d dislocated a couple of joints in each foot. Oops.
One day, sitting in class, I came across this Hadith and it touched me somewhere deep inside, the very words I needed to hear when things were so difficult. It still gives me comfort.
Narrated Anas bin Malik (RA): I heard Allah’s Messenger (PBUH) saying, “Allah said, ‘If I deprive my slave of his two beloved things (i.e. his eyes) and he remains patient, I will let him enter Paradise in compensation for them.
It had gotten to the point where I couldn’t see the writing in my books and it was impossible to write in a straight line or even see what was written so I was excused from reading/writing. I must say that the teachers were understanding but it did feel really odd sitting in class and not being able to do anything. Surprisingly, my memory became stronger and I did really well in my exams. Alhamdulillah 🙂
Finally, my appointment came through and I saw the lens specialist. He showed me the different types of lenses they do and said that RGP (rigid gas permeable) lenses would be my best bet. They’re small, hard lenses. We tried a few different ones to get the best fit. Once they were in, I could actually see the letters in front of me! My measurements were sent off to the lab so my custom lenses could be made.
Two weeks later, I was back in the opticians chair trying on my new lenses. It took some time and LOTS of practice and I was blinking VERY carefully but.. I could see! I could actually see. I was allowed to take them with me so back to school I went. And oh my goodness… I cannot describe the feelings of euphoria, excitement and happiness which rushed through my mind at that time! I could see every blade of grass. The leaves on the trees. Every brick making up the buildings! Birds in the skies! And I could actually read without holding the book about three inches away from my face! It was incredible. Absolutely incredible. A whole new world had opened up. I ran around, drunk with this new vision. Never mind that I was 17, not 7 lol. I received a few odd looks but most students and teachers knew my plight and were happy for me.
Soon I was wearing them every day until my condition started worsening gradually and I would have the fit altered every few months.
Waking up in a blurry, shadowy world and progressing to crisp, clear vision is a blessing I can never be grateful enough for. I am thankful every day for medical and scientific marvels like these.
I did used to think that Keratoconus was a big issue.. But then IBD came along and I pushed it to the back of my mind, it wasn’t a priority when I was exhausted beyond belief, dashing to the loo 20 times a day, passing blood, countless hospital visits, being poked and prodded with needles and eventually having my colon removed.
To add to the whole issue, ulcerative colitis also had an effect on my eyes.. They were usually sore, dry and sensitive and I was left unable to put my lenses in. More than once, I ended up at Eye A&E with yet another scratch on the surface of my cornea. The pain was excruciating! I’d spend the next few days lying down and keeping my eyes closed because blinking was just too painful. It felt like someone was scraping a white-hot needle across my eye every time I tried.
But now that it’s gotten a lot worse, it’s affecting me quite badly and all those old feelings of confusion, bewilderment, anxiety and frustration have surfaced. It’s amazing how I’d forgotten all that.
Last year, I wasn’t tolerating the hard lens anymore and they were making my eyes very sore. I could feel them scraping against my eye when I blinked. We decided to try something different, piggyback lenses. I started wearing a clear soft lens first to try and cushion my eye and then I’d wear the RGPs. It worked really well for months, I was getting the excellent vision of RGPs and the comfort of soft lenses. They’ve been fantastic, up until they weren’t much use anymore.
My eyes have been troubling me again for a few months now. I’m only able to put my lenses in once a week at most – and sometimes it’s only once a fortnight. I’ve been given some gadgets to help me cope and I’ve been told that there are courses for people who are partially sighted but I’m not really eligible as I’m not registered (as blind or partial sighted). And I’m not able to be registered – even though I can’t see a thing most of the time – because I CAN see sometimes. Never mind that I now spend most of my time at home because I’m too anxious to go out. Honestly, it’s like taking a wheelchair away from a mobility-impaired person and telling them they’re ok, at least they can see the wheelchair!
I’ve also been given a white guide cane which I still haven’t used – just agreeing to it was difficult enough. It felt like a huge step. I was finally admitting that my vision was so bad I needed a blind cane. I can’t really explain it. At any rate, the cane is rather useful for whacking unruly and annoying siblings about the shins while pretending they got in the way. Mwahahaha! (I should point out that my siblings are adults, there’s no child abuse here!)
There is another option which has been mentioned a few times. A corneal transplant. This is an operation to remove the damaged cornea (thin film at the front of the eye) and replace it with a healthy cornea from a donor. I’ve been thinking about it a lot and I’m just not ready for it yet. I’ve had two major surgeries in 18 months and my body still hasn’t recovered fully. I don’t think I’ll be able to take on another operation yet! There’s also the fact that it’s freaking me out. Strangely, the thought of eye surgery scares me more than the other surgeries I’ve had. Open me up and remove half my guts, no problem. Attempt to talk to me about eye surgery and I start to feel squeamish!
It’s been getting me down so I’ve been avoiding company. I’ve been told off a few times for not answering the phone and not replying to text messages. Well, I’m hibernating and I don’t want to talk to anyone, thank you.
I do try.. But it’s hard. I pick up my phone to text someone but it requires so much effort. Sigh. I just want to be. Is that too selfish?
I hope I can get past this stage inshaAllah. Everything seems to be weighing me down and I feel the way I did a few days after my op when I was heading towards a breakdown. Maybe it would be best to let things take their course and see what happens. I don’t know.
Once I hit rock bottom, the only way is up.