UK Keratoconus Self-Help and Support Association

I doubt anyone will remember me I joined a little over a year ago and haven't been seen since! I also forgot the email I was originally registered with and anyway, long boring story short, here I am again with a new name
So, lovely little intro for you I am Ali, I'm 25 and I was diagnosed with KC when I was 23. Had noticed for years before that that I struggled to see properly out of new glasses after only a couple of months but thought I was getting my eye test "wrong" (lol!) so didn't really pay much attention to it but then at a routine eye test my optician said she thought I had it and I have been using hard contact lenses ever since. I guess I am back here really just because I am starting to really notice in day to day life that my eyesight in my left eye is pretty appalling and my eyes often hurt from the strain. I do have contact lenses but I find they really hurt my eyes after a while so I won't wear them if I am away from the house for too long as I feel like clawing my eyeball out after a few hours but now glasses are also making my eyes hurt so....can't win lol. I have already had my lenses changed from whatever they gave me the first time and these new ones (rose k if anyone's interested) are hurting too, although they were fine at my last check up at hospital. I have another one next month but am not looking forward to asking if I can try something else, as last time I wanted to try a different type and told my eye man that the contact lenses I had hurt my eyes he was like "Yes well they will be uncomfortable" ok, thanks for that! lol. So basically i either have eyeballs i want to rip out after 3 hours or I can't see, that's my options?! Anyway, moan over I also lost my contact down the sink on friday night, i have a habit of doing that tbh.......
Anyway, that's me. Just saying hi, wondering if anyone feels the same? I kind of hate this condition, it irritates me literally lol but also I find it really annoying that nobody I know knows how it feels and how uncomfortable it can be and I dson't like to complain to people who have no idea how I'm feeling. So you lucky people get it instead I am actually feeling like I am probably rambling so will shut up

alibob1986

Welcome back! I guess your rant will have touched a cord with many of us here; it certainly did with me.

Let me just say that I now use clinitas soothe; this is a preservative free artificial tear and gives me extended comfortable wear time with my lenses AND helps me not to rub my eyes. win-win

Every good wish.

Andrew

What kind of contacts are you using?, i got exactly the same issues with the hard lenses i got from nhs but looking into the new soft ones people have mentioned on here

Hi there Ali

Thanks for the rant. I really enjoy reading other people's rants. They make me feel a lot better about having a good old rant myself from time to time (yesterday being a case in point!) I always end up better for it. Kind of like having a really good sneeze.

Would echo the post above -- well worth checking out different lens types if you are -- or are starting to become -- intolerant of the RGPs. The Rose K set is one of the best so might be worth persevering a little while and trying some different design parameters after speaking with your optometrist again. But what I do is to apply a technique called "timeboxing". I'll give the trial fit I've been given a specific block of time which isn't too short that my eye can't adjust but isn't so long that I get fed up and resentful because of daily discomfort. About a month works for me, but pick a timeframe which you're genuinely happy with. If I'm not starting to be more comfortable with the lens then it's back to the optometrist with clear instructions that they need to have a re-think because I've given it (the lens) a fair chance.

If you conclude that RGPs aren't for you, then as we said at the start, there's plenty more lens fish in the Keratoconus sea (sorry, that's really dreadful I know but I've not had my morning coffee yet so standards are bound to slip). You might be a bit stuck for more information, what the lenses are, where to go, what happens if my current optometrist says they can't do anything other than bog-standard RGPs etc. Please do post again if you need that sort of detail.

A final thought for when you're in a bad place with Keratoconus. After nearly 20 years I can look back with a little more awareness of what I've learnt along the way. While I'd happily trade a lot of self-knowledge and experience that I now have for a couple of 700 micron thick corneas and 6/6 vision, the process of living with the disease has taught me so much, things I could never have otherwise learnt. For instance, I'm far more involved, informed and engaged in decisions affecting my wellbeing. I'm much less a passive recipient of other's advice. I'm better able to pick on those little instictive cues you get from your subconcious about what's right and what's wrong -- and then step up and do what's necessary to get my needs met. I've a hunch you're picking up skils you enjoy developing and finding out things about yourself you never even knew. Try to keep that in mind when times are tough. Either that or come back and have a good moan here.

Cheers

Chris

Hi Alibob

Some people get on with RGPs and others simply do not. If you have comfort issues (I know, it doesn't adequately describe the pain!) then there are alternative lens types out there including larger rigid lenses (they are more comfortable because they sit under the lids), piggy backing (wearing RGPs on top of soft lenses), hybrid lenses (Lenses with rigid centres and soft skirts), dedicated soft lenses for keratoconus and sclerals.

Some of these lens types are more expensive than RGPs and some NHS hospitals do put a cost limit on what lenses they will/can supply. This varies very much from area to area, so it is worth remembering that you can get referred to other hospitals if yours cannot/will not supply other lens types.

Good luck

Lynn