panic attacks

[sarkac]

hi... for people having K for years together how did you deal with panic attacks and deteriorating vision?
God how much I suffer from them.. has put my life on hold..
i was looking for things that I could think about when I got one...
did K take your life's goals n dreams away from you?

[Andrew MacLean]

sarkac

In all honesty, Keratoconus hasn't had so great an effect on my fulfilling my life's dreams. There have been times when I have been angry with myself for not coping as well as I thought I should, but the discovery of this forum really began to set me free from all that.

Andrew

[DanB]

Hi sarkac

KC has had a big impact on my life. I've had it since I was 14 (now 31) and it has steadily deteriorated. I also have a focussing problem with both eyes.

I wanted to join the Navy when I was younger, but got turned down because of my vision. I haven't been able to drive at all for nearly 3 years now, and recently I've been advised that if I ever want my vision to improve, to conquer the focussing problem I need to find a new career where I am not sat in front of a computer all day.

So my visual problems have been, and still are, pretty life changing for me.

Not being able to drive has been a big blow. My wife and I wanted to move the countryside but are finding it hard because without being able to drive, getting around would be very difficult. However, we were looking into ways of making it work, but they have also now gone out the window because I need a new career.

I have been in my current profession for 11 years since I left university, so changing to something new is very daunting, especially as we have our first child on the way. Taking a big pay cut to start a new career with a baby on the way is far from ideal, but we'll make it work.

Despite all the challenges and limitations I've faced over the years, I've always tried to stay positive. It is not always easy and I do get frustrated, particularly at the moment, but I imagine we all do at times.

I always try and turn the negative into a positive and make the best of what I can. For example changing careers - it is daunting and scary, but very few people get the opportunity to do it, even if they are not happy in what they do. I am going to set up my own martial arts and fitness business so I end up doing something I enjoy rather than something I do just because I have to. The timing is not great as I said, but I'll just find a way of making it work.

This may sound cheesy - "turn the negative into a positive" - but it is the only way I've been able to cope with things. In the past I've found that if I start to feel sorry for myself then I just get worse and worse. Now I try not to let myself go down that route.

It isn't always easy. I do still definitely have days where I'm angry and frustrated, but that is natural. I'm lucky that I have good support around me from friends (who help me make light of the situation), my wife who is just always there, and my work who have been brilliant.

Maybe when you start to feel down or panicy, you could think about the things you can do to make your situation (whatever it is) better? I find taking control of the situation myself helps me feel less frustrated at what life is throwing at me. It's my "stuff you KC" attitude. I am determined not to let it beat me.

Another idea is if you start to panic remember that if our vision stops us doing one thing, it's a chance to do something else instead.

Also, feeling frustrated / panicy can be natural, so don't beat yourself up over it. We have enough to deal with as it is, without worrying about worrying.

I really don't know if this has helped or just made you feel worse, but I do hope it's helped.

Dan.

PS, my final tip is to get a punch bag - great for taking out frustration!

[J Hoffa]

When I was 21 i was told I had KC and I also experienced my first panic attack that year, and I`ve had them ever since. I went to get help and my shrink can´t find anything wrong like problems in my childhood etc. He belives that my bad vision trigger the attacks. I work with numbers, and because I have problems wearing contacs, I use glasses instead (glasses and KC doesn´t team up very well for me). This makes me very tired and could be one reason for the attacks. I have always been a bit worried about things that some people probably would find trivial, but I never had a panic attack before i was diagnosed with KC. This spring I will do crosslinking and laser surgery with a new mashine that my hospital ju got on both my eyes. Hopefully this will work and take the panick attacks away.

[Loopy-Lou]

Completely understand this one, for me KC was life changing and I was very traumatised in my youth and it definately tipped the balance for me ending up in mental health services and no one bar an optometrist and lens nurse could see the connection. It has continued to impact on my life and mental health and although I know we need to hear the positive life histories and how nothing has held people back it can also be quite hard for those of us for whom it has had a different impact. We need to know others struggle too to know we're not alone and that not everything comes down to positive attitude and will power.
We each react differently just as no two cancer patients are the same. Sometimes KC does take away our dreams if that dream required decent consistent eye sight, and sometimes no there isn't another opening/opportunity it means that particular dream is cut off. That isn't being negative, that's acknowledging a hard reality and as much as we need to encourage each other and make productive suggestions we sometimes also need to 'sit and feel the c**p' with a person to as a mate once said to me, to say 'yep that's c**p'. Some days we need to be allowed to throw the towel in in whatever we do so and say OK tomorrow is another day, we don't have to be brave and strong every single day.

Something I've found useful in managing distress is to get outwardly pissed at my lens when it's prickly [and of course always at the most inconvenient time] so I shout at my lens - you BASTARD you're doing this to me deliberately aren't you? You're not worth ....GET IN THERE you piece of plastic shit...you get the picture!!
Although it can make for some funny looks from people as you leave the disabled toilet..but sometimes it's useful to let out the frustration - no one will die, cars will not crash, if you have shout/get pissed at your lens.
Same for deteriorating vision or whatever, let it out - sometimes trying to contain all our feelings can precipitate panic attacks - the sheer effort it takes to keep the fear in will burst out one way or another.

Also - plate smashing, throwing hover against the wall, taking a hammer to electrical equipment [preferably ones which are going to thrown away anyhow] - like microwaves, video players.

Have a good rant at the wall or to a mate, just say everything you feel no matter how "incorrect" or negative it sounds. Sometimes we need to say how bad it is and how we have no hope in order to get to a different place in our heads