UK Keratoconus Self-Help and Support Association

I know there is no quick solution to this, I just need to vent my frustration!

I was diagnosed with Keratoconus about 23 years ago when I was 20. I had worn glasses since the age of about 5 so I can only ever remember having issues with my vision.

Both my eyes have advanced keratoconus, my left is the worst effected. Glasses do not work and I have been wearing bespoke sclerals for about 7 years which have been working well following cross linking in both eyes. I am fully reliant on my lenses as I’m essentially blind without them in so even the simplest of tasks requires me to put my lenses in.

Over the last year or so, my optometrist has been struggling to get a lens fit for my left eye. It either doesn’t fit well but has good vision or it fits well but there is no vision.

Just after Christmas I had some terrible inflammation of my left yet and couldn’t wear a lens at all for a couple of weeks. I’m now back in a lens for my left eye but the vision is no good so my right eye is doing all the work.

This has now resulted in severe limitations in my daily life. I cannot drive or even leave the house when it’s dark because I can’t see properly. The vision in my right eye fluctuates through the day so now I’m anxious to even drive in the day.

It’s affecting my work as I have a computer based job that involves reading a lot of word heavy documents which has become near on impossible particularly as the day goes on. I’ve worked so hard to get where I am in my job so this is really upsetting me as I’m wondering if I’m even going to be able to carry on with this job.

I’m exhausted all the time from trying to do life with the unstable vision, I have constant headaches and my eyes always feel sore.

I’ve always been a fiercely independent person and I’m so frustrated that currently my independence is severely compromised. This condition has never worried me or upset me, I have always just taken it in my stride and it’s been ok. The last few weeks have been hard and I am just fed up now. I just want my normal life back

Hi Danimarie,
I'm so sorry you're having such a hard time after years of managing so well. Though I guess quite a few of us here have had similar experiences and understand how difficult times like this can be.
Do you have a sympathetic employer who appreciates the flexibility you need at the moment? Do have a look at the section about work on our website if you haven't already https://keratoconus-group.org.uk/Living ... -can-help/
There's also a leaflet that explains KC to an employer which you can download.
Is your optometrist continuing to find the right lens for you? The infection must have been a real set back, but hopefully there will be a solution before too much longer.
I don't know where you live, but we have a Zoom meeting for members coming up this month (25th). Details of that and some (day time) face to face meetings in London and Birmingham are on the events ticker of our website. You'd be very welcome at any of these.
And although glasses aren't an alternative to lenses for you, do back up glasses do anything for you? When my eye sight was at its worst, no glasses did anything for me, but at other times, glasses were better than nothing at the end of the day when my eyes were really tired. It's something contact lens practitioners don't always think of suggesting.
I hope some of this helps. And don't be afraid to vent more - that's what we're here for!