The most terrifying weeks of my life

As someone who regularly shrugs off laughter from my cycling friends for wearing sunglasses (I really should get proper cycling glasses) at all times when riding, even in dull, dreary conditions, my pride takes a backseat to the protection of my eyes.  Or eye, to be more specific.  You see, I’ve only really got the one functioning eye as since birth I have had a gnarly scar on the retina of my ‘bad eye’, which means it’s kind of like a window with a lace curtain over it: good for letting in light and seeing shapes move/colour, but not great for actually seeing things.  Unsurprisingly, I’m pretty cautious about my vision.  For example, I would never consider bungee jumping as I read there is a chance your retina could detach.  No thank you.

POP QUIZ! Which of the retina images below is of my faulty eye?  I bet you get it right.  Hint: it’s the one that looks a bit like it’s growing mould.

One Saturday morning a few weeks ago, I woke up and tried to read the time on my phone screen, but the glare made everything on the screen swim around, and I had to squint to make anything out.  I just assumed it was first-thing-in-the-morning blurriness, and put my phone down.  When I went outside, the bright sunshine made everything swim around.  I sent a message to a friend who is a GP-turned-optician casually seeking reassurance, because I am a raging hypochondriac, but after I described my symptoms got the reply “You should get it seen immediately.”  PANIC STATIONS ON!

I managed to get an emergency appointment at the optician, and went through a series of tests before being reassured that my eye looked perfectly healthy.  THEN WHY CAN’T I SEE PROPERLY?! They made me a follow up appointment for the following week to make sure everything was still fine, and with vision eventually starting to improve, I started feeling calmer.

The following day I went for a 50 mile cycle, and though vision seemed normal, under the strip lights in the supermarket that night, things seemed to be moving around a little.  Huh, must just be wearing off.  Be cool, Rachel – it’s all good. The following day, Monday, it was back to school after the two week October break, and vision seemed to be normal.  I brushed off the experience as a one off weird-body thing, and went about my day, breathing heavy sighs of relief and promising myself I would eat carrots more.  Because eyesight is great.

Everything remained normal until Tuesday midday.  I went for a coffee with my friend Claire at lunchtime, and on the way back to school the low sunlight hitting the autumn leaves was playing tricks on my eyes.

“Whoah, hey, Claire, is the sunlight doing weird things to those leaves?”

“Uhhh, nope.  They look normal to me.”

“Oh.  Shit.”

We went back to school and the strip lights in her classroom were making me squint, and everything on her desk was dancing.  I had one class left in the afternoon, but as it seemed to be getting worse quickly, she offered to cover if I could get another appointment at the optician, which I did.  Again, everything came back normal, but by this time everything was blurry and I was in mini-meltdown mode.  By dinner time, I had taken up my friend Roz’s offer to drive me to the hospital, and I was seen in A&E and given yet more tests.  They decided it was probably an eye-migraine (who knew such things existed?!), and offered a shot in the butt of some mega strong migraine drugs.  I also had the joy of peeing into a cup (not pregnant), and given a list of things that could potentially trigger an eye migraine (caffeine, hormones from contraceptive pill, stress, an infection, blah, blah, blah).  I decided to avoid all of these things in an effort to get my vision back ASAP.

Wednesday morning and things had deteriorated.  I could barely read anything and struggled to make out faces on the TV.  I called in sick for my spin class and work, and made a same-day GP appointment, where I was again told it was likely an eye migraine and prescribed more drugs, but told to phone back the next day if things hadn’t improved.  I had convinced myself I was going blind, and was near hysterical.

By Friday things hadn’t improved, and my GP said he’d get in touch with the Eye Clinic at the hospital to try and get me an emergency appointment.  By Friday afternoon I had developed a sizeable blind spot, and my boss and one of my colleagues were sitting with me at yet another emergency optician appointment.  The woman who took care of me was very nice, and told me to wait while she tried to get me into the Eye Clinic (I didn’t bother telling her my GP was doing that – I wanted these people to be hassled enough to see me IMMEDIATELY) as soon as possible.  An appointment for the following Monday – after an entire freaking weekend! – was made, and I was told if things didn’t improve to go back to A&E.  We decided to cut out the waiting and head straight there.

Behold a crappy MS Paint representation of what my vision was like compared to normal.  If you stare at the red cross, that’s kind of close to where I was at.  Kind of.  My Paint skills are somewhat lacking.

I guess sobbing uncontrollably and ugly crying made the lovely nurse take pity on me, and the fact that I have very limited vision in my other eye made him phone up the on-call eye doctor in the Eye Ward and practically force her to see me that night.  What followed was a bit of a journey through the hospital maze, a bit of a wait, and finally some more tests.

The lady who saw me was probably one of the most reassuring people I have ever met, and she told me it was one of two things: an eye migraine (which is basically what they diagnose if there’s nothing else wrong), or optic neuritis, which she explained was basically inflammation of the optic nerve behind the eye.  Symptoms include blurred vision (check), blind spots (check), flashing lights (check), and dulling of colour (check).  She told me not to worry, and to come in for my appointment after the weekend for an MOT.

She also mentioned that the condition usually got worse before it got better, but that improvements usually start after a couple of weeks, and normal vision after improvement could return after as much as 12 weeks.  Butt-cheeks unclench!  I’m not going blind!

One slightly more concerning fact she dropped on me is that it can be an early sign that someone is developing MS, but at that point I was only concerned about getting my vision back.

The following weeks were a blur of appointments, sobbing quietly to myself on my sofa, friends coming round to cook for me and keep me company, my dad flying over from the States to take care of me, MRI and CT scans, and avoiding looking up my condition on Google, because I would inevitably convince myself I was dying.  It has now been nearly a month since this whole thing started, and my vision is slowly improving.  I have to wait until the 28th of November before I get scan results and see yet another specialist, but the fact that I can leave my apartment and actually see cars as I try to cross the road has opened up a world of possibilities for me: I can walk to the local supermarket unaided, I can use a computer, and I can see that I need to vacuum my living room!

The fact that my anxiety levels regarding my vision have dropped would normally be great, but in this case it has simply allowed me to start dwelling on other possibilities, because my mind is a dick: what caused it in the first place; what if I’m developing MS; what if my vision never gets back to normal?  Basically, I’m a sad sack of panic, so I am very much looking forward to getting all of my results back and things getting back to normal.

I’m sure my mother, who has been on the receiving end of my distressed phone calls (usually about 4am Texas time), is keen for things to calm down as well. And my colleagues, who have been keeping things ticking over in my absence, and who will definitely be treated to something nice when I finally get back to work.

10 thoughts on “The most terrifying weeks of my life

  1. Oh my god, I’m so sorry to hear about this. My eyes are not great and I worry as I get older, but nothing like this.
    You are writing so I’m hoping that’s a sign that things are improving. Sometimes weird stuff happens and then it goes away.
    Andy

    • I am definitely firmly within the ‘improvement’ stage, but bright lights/computer screens make everything kind of hazy, so writing this was a multi-day task. Here’s to health!

    • It does – it’s crazy how complex the human body is and how something can just throw a tantrum at any time without any warning. I’ll never complain about my bum knee again.

  2. So sorry to hear about the scary time you have been having. 2016 has thrown a lot at you. I hope that things settle down and that all the tests find nothing. Go for ‘idiopathic’!

      • Sometimes you just have to laugh or you would cry! 😂. I thought it was bad enough when I discovered that I share a birthday with him( I could cope with Boy George but not him!). But you have to share a country with him.
        It can only get better!

  3. One week left until you get the scan results — hope there’s only good news to read. I got UV keratitis back in 2010 because I didn’t run with sunglasses ever and that put quite a scare in me. For some reason, getting injured makes me hate the part of my body that hurts, but I did everything possible to treat that eye “injury” because well, eyes are fuckin’ eyes, right?

    All the best!

  4. Scary, trying times for real… thanks for sharing this Rachel, you’re a tough nut and I’m rooting hard for you as always. I actually have (at least) 3 friends who I know have MS, and they’ve all been living happy, healthy & productive lives for years now. It’s so hard not to take all our healthy bits for granted, but then again I guess that’s what being healthy is all about? Here’s hoping life returns to normal for you very soon, and you’re able to take every freaking part of your entire body for granted for a long long time.

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