Paranoia :(:(:(:(:(

[optom]

is it only me or do you find ourselves in a constant case of paranoia ??/ I though it was all going smoothly till my out patients apt last thursday , im nearly 5 weeks into the graft now and i thought i had become totally used to it , but no i find myself always looking for signs of rejection . i have returned to work two weeks ago but i haven't let myself go out with my mates or anything to the pub etc . am i been to extreme or do we need to be this careful ?????

sme one please tell me the results will be all worth this ....

im 21 years of age just finding this post op life a lot more restricting than every before when i and KC and while i know vision inst going to increase in a puff of lovely miracle smoke and its a waiting game its f****** FRUSTRATING


rank over ...

[space_cadet]

To be blunt life and every day tasks scare the F**K out of me, but due to having mental ill health along iwth other physical ill health problems for the majority of my 26 years of life over the last 5 years I have had the philosophy of I CANT LET THE B@ST@RDS WIN. I have to prove I can do it, afterall if you don't try something how do you know you can't do it.

When I have my paranoia moments several times a day Ben my fiance reminds me as Yoda says 'do or do not' (at least that is what I thihk he says!'

Feel able to PM me if you want.

Lea
xox
www.yadhdpm.co.uk

[Loopy-Lou]

I too get paranoia in relation to my eyes, as a voice hearer my voices will actively taunt me about the long term survival of my grafts and if I have a bad lens day they will go on about lens intolerance/graft failure. Sometimes I talk about it, other times I need hide under the duvet. I think mental health services are pretty bad at supporting people with any sensory difficulty and don't appreciate the impact on mental health. Then because of the stigma attached to experiences which are deemed to be mental illness and the lack of appreciation by general medicine we can feel reluctant to share that distress with our ophthalmic services in fear of not being taken seriously as an ophthalmic patient.

I think a few weeks after a graft which IS a very big deal it's ok if you feel a bit cautious and it's understandable to worry and check for signs of rejection. The first thing I do every morning is open my eyes and check for changes because waking up with a massive hydrops years ago was one hell of a shock to me so I can get into fearing something dreadful will happen whilst I'm asleep. Anxiety after a graft is normal, just go with it rather than fight it or getting into thinking 'I must not feel this' - it will get easier, so do things at your own pace and you will feel more confident with the passage of time. Maybe think about doing something with your mates which feels 'safe' or talk to them about your fears of going to the pub. Maybe get 2 mates to walk either side of you so feel physically more protected

[tneedham]

I feel your pain dogg.......

every day i seem to wake up with a slightly different sensation (mostly pain) in my grafted eye.
I have been advised that 'if it was rejecting, i would know about it'.... doesnt seem to help though, i still look out for the littlest signs of rejection.
I was lucky enough to have a very suportive girl friend who MADE me take it about 20 times easier than i would have done if it had been up to me. That meant, no alcohol, no bending down, stretching, running, taking more than 1 stair at a time, basicly sod all, for about 2-3 months. It was about as frustrating as is possible.
I thank her for it though as i recon it healed a lot better thanks to that initial period of total rest.
The important thing that i learned is that i really need to re-assess and accept (the hardest bit) that my physical capabilities are greatly reduced for a while, i still want to do the same things as i did before, but i simply just cant, at least for now...

Take it easy and enjoy the rest time.

Tom

[Liam]

Hi Optom,

I too felt like you in the initial stages post surgery. However, one thing which really helped me was safety glasses which I wore and still wear going to the pub, on the tube etc. You can get a decent pair (which don't look like typical safety glasses) for a fiver on a good website.

I knew in the unlikely event of my grafted eye being accidently poked or bumped that I was well protected. I am not sure what they are made of but I do know they are quite tough hence the name. It gave me some reassurance.

Liam

[GarethB]

Liam's suggestion is an excellent ones. The polycarbonate lenses can withstand relatively severe knocks and do look like sunglasses. The Tornado range by North safety are very good, I get mine from Fisher Scientific about 5 years ago and they are still going strong, only know arethey showing signs of scratching on one edge of a lens.

You do need to be careful, but I am from the school of positive mental thinking. I protect my eyes, have the contact details for the hospital in my mobile, all my friends know I've had a graft and I have a medic alert bracelet. I know if I go out and there is a problem my friends willget me to hospital. If for any reson I am unconceous, I know any paramedics that treat me will see the medic alert bracelt and so will know I've had grafts and wear contact lenses.

To me, what's the point of staying home to protect your eye when you could easily forget to close a cupboard door and walk into it with your grafted eye

[Caroline]

Just to say it will get better. I was extremely anxious when I first had my graft done and as time goes on you will worry less. Just make sure that you talk to friends and colleagues, I have printed some of the leaflets from the website to show to people to give a simple explanation. I was in my 20s and yes very nervous about going out at first but put your trust in a good mate or family member, choose a time and place that is quiet to start with and build your confidence back up. Gradually it will improve, I can remember dancing with my eyes shut!!!! (surrounded by friends!) at a family party. Take your time and if you do notice any changes with your eye whether you are in or out, just pop to eye casualty. You will know if things are changing. Good Luck and go for it x

[optom]

Hey guys THANK YOU ALL SO MUCH for your reply really has made a world of difference to me , i thought i was going bit crazy. Since my last post i kinda pulled myself together a small bit and stopped feeling sorry for myself . I went put last weekend to a 21st and then my favorite pub and i have been deaf since because the music was so loud lol and me worrying bout my eyes ( also think i am turning into n old man at 21 lol)

Found an absolute fantastic ophthalmologist in my local town and at least i now know i have that security blanket there to fall back on and don't have to worry bout been so far from the a&e .

I no exactly what you mean though when they day YOU WILL KNOW we you are rejecting or you have a closed angle and your just sitting there thinking but i wont know because i have never felt it before and maybe i always get bad headaches like a migraine and maybe u have a really high tolerance for pain and i take some painkillers when i have a head ache and go to sleep and all along my angle is totally shut and im off dreaming or god knows what .....

Any way this im afraid is turning into a rant

Keep weel guys

Optom