8 March 2016

Living with Recurrent Corneal Erosion

This condition is something I don't advertise that much because it takes a while to explain. Other than a slightly bloodshot eye there are no external indicators of when it occurs. The effects however are quite potent and it can prevent me from training effectively.

Recurrent Corneal Erosion (RCE) in its simplest explanation is the result of dry eyes. Basically, while sleeping part of the eye sticks to the eyelid because the lubrication is ineffective or absent. So when the eyes move, such as opening in the morning or when dreaming ie REM sleep, a small part of the protective surface wrenches away. The result is instant sharp pain, the sensation of having a sharp object stuck in the eye and copious amounts of tears as the body tries to flush the problem away. Not everyone with dry eyes will experience this, there are a few indicators that factor into it, the majority is that your eye is lacking something. My cornea are oval instead of round (astigmatism) which may contribute. Its the reason I need glasses. So let's discuss a typical day when this occurs.

The first hours
For me the pain reduces significantly after an hour or two, and is helped with a cold compress. Unfortunately this happens at around 5am which instantly mutilates whatever sleep was remaining. Thankfully I have an awesome and understanding wife that grabs what I need during my occasional episode.

A small amount of pressure on the eyeball helps, such as resting the eye on the edge of the pillow. More than that however increases the pain so it's balancing on a razor's edge. It's impossible to open the eye even a crack for at least an hour. By the time I've showered, dressed and eaten breakfast I can usually open the eye but the house has to remain dark. My vision is very blurry and I usually have to close the affected eye to see clearly. The problem with this is that the muscles to control the eye lids are meant to be used in unison. Keeping one eye open requires slight squinting of the closed one. Try it yourself. Close both of your eyes and rapidly open one fully, the outer edge will generally squint. This slight change is enough to increase the pressure on my damaged eye causing further pain.
So I have three options: keep one eye closed and increase pain; leave them both open and have acute blurry vision; or keep them both closed as I navigate the house blind.

Off to work
Get it off me! Get it off me!
It doesn't end there however. One of the many side effects is photophobia, which is an extreme sensitivity to light. So the moment I get in the car to drive to work on even an overcast day, my eyes swell with tears and I get an almost instant headache. So driving on back roads at slower speeds is a constant battle between weepy eyes, blurred vision and pain as I switch between as many variations on eye opening that I can think of. Often I need to pull over to take some control of the situation before continuing.

Have you ever tried working on a computer with poor eyesight? If you have glasses and forget them for a day you might understand the problem. Not only is it a strain on vision which causes a longer headache, but I have to lean in closer hurting my back and neck in the process. This makes me grumpy and irritable to put it mildly.

So by the end of the day I've had interrupted sleep, a headache as constant companion, sharp eye pain, blurry vision and I want to rip someone's head off. All this when only one eye is affected. That clears up after a single day. You don't want to know the hell when it happens to both, which lasts a few days and doubles everything.

RCE and training
If this happens during the week I can usually handle it. By about 6pm my blurry vision has returned to about 70% of normal and after sleeping I know it should be restored. Training starts at 6:30pm so I am generally good to train normally and release any frustration or anger. No matter how murderous I feel at the start of class, after 20 minutes I'm calm. If I got nothing else out of martial arts, this stress release would be all the reason I need to continue.

The bigger problem comes if the RCE occurs on the weekend. As training is at 10am I've barely had time to adjust to the light. But the worst part is how weak it makes me feel. Doing anything strenuous while in the throws of this bastard syndrome makes me light headed, critically weak and ready to vomit. I've found I can still teach but increasing my heart rate above 90bpm is debilitating. This usually passes before noon and I can return to regular activity levels.

One of the hardest things to accept about this is that there isn't a guaranteed cure. There are a few surgeries that might help, but they can either cause other issues or may make it worse. I'm not about to risk eye surgery on a 60-70% success rate and a 1 in 3 chance of making it worse. The only thing that contains the issue most of the time is long lasting eye drops before I go to bed. I have tried three
Mr Burns Sword of Damocles
The Simpson's have a scene for everything
different drops (the only options at the chemist) and each only delay the onset or reduce the impact. While that is a slight relief, I live under a Sword of Damocles, never knowing when an RCE will drop.

I'm generally good at putting the drops in, but I've often missed it after an exhausting day and subsequent crash. It seems that RCE has a mind of its own in these cases. Before I started using the drops I would get an incident every few months. After the drops, because I've denied it for so long, whenever I don't use them an RCE will attack in the only opening I allow.

The road forward...
This is something I simply have to live with, and with regard to training I have to treat it as just another injury. This type of injury is mentally draining as you are physically capable, but thrown so far off your game you can't do anything useful. Often I simply have to stay at home in the dark. We often take our health for granted and it isn't until we lose mobility or vision that we truly appreciate what we had.

While you may not have the same issues as me, as you get older it's more likely your vision or hearing will become impaired, your back less flexible, your strength weakens and your weight increases. Thinking on how you will deal with these issues before they occur will ensure you can take anything life throws at you.

Batman Arkham Knight cover
My therapy
I've treated my body like crap from an early age and I'm paying the price now. I'm confident you have as well in some manner. I know I am strong enough to get past it, even when I'm dejected and at my nadir. During these lowest points you don't want to hear platitudes that you will improve. You want to wallow in your own pity party. So my advice is to find something to keep your mind off the self pity for as long as you need.

For me that is playing video games. In the case of an RCE that means something I don't need to read and that doesn't rely on pinpoint accuracy. I have a few of these on hand at any given point. I'm quite partial to Batman Arkham Knight as I can mindlessly drive the Batmobile around the streets of Gotham and vent my frustration on the hapless goons that get in my way. It does wonders.

Please visit the comments to share your own experiences or the virtues of video gaming for therapy.
Also let me know if you want the detailed medical description of what happens during an RCE, I have extensive files.

1 comment:

  1. We have the same type of astigmatism! I have found daily flushing of my eyes/nose/throat with saline solution in the shower helps me immensely. I haven't had the RCE to the extent you describe, but I am prone to allergic conjunctivitis & understand the light sensitivity you describe. There are medicated solutions, but my Dr recommends using your own iodised salt mixed with warm water - you have to do it to a taste/comfort level, but you can add more as you get used to it. Initially gargling it could make me vomit if I did it too strong, but that hasn't happened for years now. It is a great/cheap way to flush toxins out of the eyes & it has reduced my incidence of ear infection too as they are all inter-related.