Utterly miserable

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Utterly miserable

Postby space_cadet » Fri 08 Oct 2021 5:42 pm

around 2 years ago now on top of KC n other stuff wrong with my eyes I was dx with corneal filaments which are small protein deposits that grow on my corneas n have to be removed under the slit lamp. I am on drops to slow down the frequency of them growing but their is no cure for them.

I have today had 7 removed, I was last in the eye casualty 10 days ago having more removed, this is really starting to impact my mental health as I can't financially afford to sort out childcare with no warning and then cabs to and from hospital so frequently, it is exhausting and draining, and in short making me miserable.

I had tickets for a concert last night one of my favourite bands something id been looking forward to for months, but had to leave a good hour before the end as the pain the filaments cause got overbearing and too much and I just wanted home, this is despite I had my eyes closed and very dark sunglasses on.

Not sure the purpose of this post but had to get it out somewhere, does anyone else struggle with filaments?x
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Re: Utterly miserable

Postby gsward » Fri 08 Oct 2021 7:37 pm

Hi, my view is eye (and ear, plus a few others) pain are among the worse. I think it is because the source of the pain is so close to your brain. Reading this, and trying to be helpful, have you talked to your GP about the overall picture and how it is affecting you? As you have dependents and are clearly a 'carer' there might be Carer's support services that you could call on. Your GP may be able to direct you on that too.

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Re: Utterly miserable

Postby space_cadet » Sat 09 Oct 2021 7:41 pm

our 8 year old gets support both from school and young carers for my heinz 57 varieties of disabilities already, my partner also gets support as I do for his too.

It is more the exhaustion of having to try find last minute childcare, get to the hospital, juggle tehn collecting 8 yr old if partner is working away etc,

as corneal filaments are not to be messed around with and as their is no cure just medication to slow the growth of them they need removing pronto before they cause additional issues.
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Re: Utterly miserable

Postby Green » Sat 16 Oct 2021 5:35 pm

I'm so sorry, that's an utterly miserable situation, I'm not surprised you feel c**p. There's clearly a need for an emergency childcare services for disabled people needing to get to A&E fast and regularly, I'd like to see something like this piloted and funded, ditto a specific subscription taxi service.
Not much use to you right now I realise, I can only offer my heartfelt empathy.
x

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Re: Utterly miserable

Postby space_cadet » Sun 17 Oct 2021 6:38 pm

thanks Green, it is exhausting, especially as there is so little knowledge of said filaments (at lest locally)
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Re: Utterly miserable

Postby Green » Thu 11 Nov 2021 1:39 pm

How are you doing?

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Re: Utterly miserable

Postby space_cadet » Wed 17 Nov 2021 6:41 pm

Hey Green, thanks for asking, I had a routine cornea clinic apt on friday just passed, and had another 7 filaments removed, I also managed to ask about Autologos Serem as a treatment for the beyond chronic blepharitus and severely ddry cornea surfaces and lack of tear production etc, and after a lot of back n forth n asking another consultant to come n talk to me they gave in! so I am now on the waiting list of roughly 12-18 months for that which is really positive as nothing is really helping and the filaments are part of the cornea surface fragmenting away due to how dried out it is etc. We are taking the kids away this weekend with my inlaws which is really good n I am looking forward to it, just hope teh weather behaves. Not much else ot report on, other than lil man is now 15 months and puts his hands on his head n says "oh my gosh" rather a lot which is both cute n amuzing at once. How have you been?x
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world

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Re: Utterly miserable

Postby carmel » Mon 22 Nov 2021 9:39 pm

I don't have filaments, but I have kerataconus and scleral lenses, which, most of the time, are uncomfortable and can be painful, this affects my work life and I can't plan a social life in case my eyes are sore and I have to lie down in the dark. I totally understand what you say, it's miserable, isolating and very few people understand. Some days, I take the lenses out and have a good cry, I've been waiting to a left eye regraft for over 2 and a half years, there's a shortage of tissue so I may have another long wait. I really hope you get some support on here, it's c**p being in such pain and feeling so low, pain is tiring, and impacts so much on mental wellbeing.

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Re: Utterly miserable

Postby space_cadet » Tue 23 Nov 2021 4:31 pm

carmel wrote:I don't have filaments, but I have kerataconus and scleral lenses, which, most of the time, are uncomfortable and can be painful, this affects my work life and I can't plan a social life in case my eyes are sore and I have to lie down in the dark. I totally understand what you say, it's miserable, isolating and very few people understand. Some days, I take the lenses out and have a good cry, I've been waiting to a left eye regraft for over 2 and a half years, there's a shortage of tissue so I may have another long wait. I really hope you get some support on here, it's c**p being in such pain and feeling so low, pain is tiring, and impacts so much on mental wellbeing.



My KC was diagnosed back in 2009, by 2010 it had left me legally blind which I now use a long cane to help navigate teh world, it works for me and I identify far more as someone who has become blind than someone who has KC due to how it affects and impacts on my life, the filaments are a seperate eye condition but relativley linked to the KC due to the extream blepharitus (chronic dry eye)
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world


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