You Don't Know What You've Got, Until It's Gone.

It really is true, when they say, you do not know what you've got, until it's gone. You really couldn't hit the nail on the head any harder if you tried, when it comes to vision. Which is a funny euphemism to use really, how many of us could actually hit a nail on the head physically! As a teenager, I used to trip over, fall up kerbs or stairs, and pretty much trip over nothing really. I wore glasses and the prescription was changing every 6-12 months but neither I nor anyone else thought much about it.

You don't know what you've got, until it's gone, by Kerrie Phillips (Keratoconus Group Blog)

It wasn't not until I graduated from university after my nursing diploma, and went to do my driving test, it all became apparent. I failed my mock test, as I could not read the number plate at the required distance. After another eye exam at a different opticians to my usual, I was diagnosed keratoconus and referred to the local hospital.

I was seen by a corneal specialist and had a topography scan confirming diagnosis, from there I was referred to a contact lens specialist for fitting. Lens seemed more harmful and trouble then they did of benefit, and as vision with glasses was good that was how I carried on. I have managed to work full time, bring up a family and squeeze in a critical care BSC, over the last eight years.

Roll onto now eight years later, my condition is advancing and vision deteriorating, I have come to a point, where I am borderline for driving with glasses. I struggle with distance,everything has furred edges and seems distant. Sometimes people call me across the street, but I am unable to recognize them, due to facial distortion. If I go out at night I need guidance and help, someone to hold my hand and lead me! Due to altered depth perception.

If I go out in the day my eyes are streaming with tears, and I'm almost blinded by them, I need to keep my head down and look at the path. I go to bed with sore, dry eyes, that feel like all the moisture has been sucked out of them and replaced with sand, I wake up like it to.

In eight years myself and my lens specialist, have not been able to come to a solution with lenses. Dry eye and atopia mean my eyes have rejected everything so far, after five hours of wear lenses are seriously painful and my eyes look as though I've been stabbed in the eyes. I'm not advanced enough to be considered for any procedures, last resort is to try a scleral lens, but there's no guarantees.

Kerrie Phillips (Keratoconus Group Blog)
I'm scared for my future, I'm 39 I have a long life ahead of me, and I hope a long and fruitful career as a nurse, that I want to progress and develop in. I wake every day not knowing how my vision will be, wondering when the day will come when I can not drive anymore,when I can not work anymore and do what I love in caring for others.

I have lost confidence, I avoid going out, I avoid driving, and limit myself to my journeys to work and back. This in turn means I avoid friendships, because I want to avoid driving places and meeting people. I can honestly say my KC has defined me and who I am, but also made me a better nurse, I only live in hope these sclerals work for me when they come, if not I'm not sure what the next chapter will be for me.

20 comments:

  1. Have you looked into PROSE at Boston Foundation for Sight? I have kerataconus as well and these helped me immensely. http://www.bostonsight.org/PROSE-treatment/About-PROSE

    ReplyDelete
  2. I love my sclerals. Hope they are great for you!

    ReplyDelete
  3. Hi . I like in UK so not tried the Boston sight , the sclerals were a poor fit when I went to collect them , so they have been sent back and I'm now waiting Torks , on fitting they gave me 20/20 vision . So I'm hoping they will be a success. My biggest issue is getting around the atopia and need a good anti histamine for my eyes .

    ReplyDelete
  4. So much love to you! I wear scleral lenses and I love them. They are very comfortable, and I wear them for very long days--16 hours or more. I hope you find some hope and relief in them!

    You are not alone! And I share your fears!

    Good luck!!

    ReplyDelete
  5. I have been dealing with KC since I was 17 y/o. Fast forward to 35 and I am constantly worrying about my eye sight. Although a little as a few months ago. 1 year ago I did crosslinking + intacs in my left eye which was the most advanced. It has improved so much and now about too t right. There is hope a technology to help us treat this mobster. Sending you good luck with the new lenses. Hang in there.

    ReplyDelete
  6. I'm getting scleral's, they're incredible, I love them

    ReplyDelete
  7. I'm getting scleral's, they're incredible, I love them

    ReplyDelete
  8. Why not just try sclerals? Got mini sclerals years back once RGPs stopped doing the job around 25, now 29 and they've been great.

    Also don't let it hold you back. I now can only use the scleral in my left eye as right is too progressed and due for transplant (so effectively have one eye atm)...yet i moved to Hong Kong, got a new job, run marathons, keep social and travel frequently in Asia. Had a year in my early twenties where i got upset about it & was a bit of a hermit but then figured i should sort myself out and enjoy life...not looked back since

    ReplyDelete
  9. This comment has been removed by the author.

    ReplyDelete
  10. This comment has been removed by the author.

    ReplyDelete
  11. Hi Kerrie,

    I read your story and it feels like I was reading mine to some extent. I have suffered from KC for more than 10 years and I was recently diagnosed. Like you it has made me a better healthcare provider. My eyes also rejected every lenses leaving me hopeless. I wondered if i would be ever be able to practice with license. Today I am grateful to God for inspiring someone with the idea of sclera lenses. It has made a difference in my life. No more pain, no more dry eyes and above all I can see, I can drive at night and list goes on. I pray that sclera lenses transform your life too. Best of luck

    ReplyDelete
  12. The initial Scleral's were not a success
    I'm Waiting on torcs, I tried yesterday , though vision and comfort were good, removal And insertion were not so easy.
    I got frustrated cried and left without them. I need to go back and try again in a couple of weeks.
    I need them though or I can't function , glasses will only provide certain vision

    ReplyDelete
    Replies
    1. Hey I'm in UK also what are forks and are they nhs?

      Delete
    2. Sorry torcs didn't see auto correct till it was too late

      Delete
    3. Sorry torcs didn't see auto correct till it was too late

      Delete
    4. Hey I'm in UK also what are forks and are they nhs?

      Delete
  13. You should look in to options like custom sclerals, PVR PROSE, and EyePrint PRO.

    ReplyDelete
  14. Your story is basically mine! My eyes are so painful and bloodshot, nothing helps. I tried sclerals but insertion and removal were difficult and I too started crying and having anxiety and ended up leaving. Praying to try again next month. I use Frankencense essential oil on the skin around for pain, Naphcon A drops work a little for redness and eye gel and a cool mask at night kinda help.

    ReplyDelete
  15. you're life is so not over - you are brave! keep fighting!

    ReplyDelete
  16. Thank you for this story. J have been dealing with the loss of my vision in one eye and am now going in for cross linking to save the structure of my Corona as it has two tares in it. I was given the diagnosis at age 32 when I was practically blind in one eye. I am starting to see myself pull away from the world socially...but remaining focused in my work as a mental health worker. Thank you. I could connect on so many levels.

    ReplyDelete