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 You look ok to me....

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RKOPrincess
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PostSubject: You look ok to me....   Fri Jun 08, 2012 3:32 pm

I sure wish there was a simple way I could get people to understand what it feels like to suffer from IIH. I saw some relatives on Sunday who's response to me was "Well you look ok to me..." am I supposed to walk around with a big neon light or something?? Even my husband seems to think that sometimes I'm exagerating. :(

So far I've not been able to return to work because they can't get my pain undr control and my vision gets worse evey day but becuase these are all things that people can't see unless they are in my head everyone thinks I am ok. Saying to my Mum she looks fine. It's like I have to defend the fact I'm sick and that just feels wrong in itself but everyone on this forum knows how bad it feels and that no one in the world would fake this.

Rant over for now ... I think
xxxx

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sinister416




PostSubject: Re: You look ok to me....   Fri Jun 08, 2012 3:52 pm

[You must be registered and logged in to see this image.] I completely understand what you mean, its so hard for people to understand when you look ok on the outside. I know it can be frustrating but I think no one really appreciates how you feel or what your going through until they experience it themselves. Try and it explain it to them and if they still don't understand let it go, you can change it and you know how you feel and that the most inportant thing xxx [You must be registered and logged in to see this image.]

We have a guide that might be helpful to you [You must be registered and logged in to see this link.]
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Heidi
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PostSubject: Re: You look ok to me....   Fri Jun 08, 2012 9:29 pm

It might help to show them these videos made by people with IIH. It tells their struggles and life with this disease. It will show that you are not alone and the difficulties you have and are facing.

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I Have IIH Guide To Informing People About Your IIH booklet
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Sophiasmom
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PostSubject: Re: You look ok to me....   Sat Jun 09, 2012 4:53 am

one of the most discouraging things I have learned with this illness is how little empathy other people really have. there is no way to convey what we go through without making them live in your head, for weeks and months at a time until their spirit is crushed with the despair of ever having a good day. I describe it as being "200 feet underwater". I suppose the first few days of having the flu might be a comparison they could relate to. it is like living your life on the bottom rung of Maslow's pyramid, a constant struggle for survival, with that rung being a razor's edge that I try to balance on, on a daily basis. any little thing can push me off into nonfunctionality and misery, and I never know when it will hit. I am at the whim of whatever controls how my ICP goes up and down, however much I might try to control the variables. It turns you into a control freak. and then those around me throw rants at me for being a control freak and the emotional drama makes my pressure go up and I am wrecked for the day. no, I am OK if I never hang out with another human again. it is just not in their nature to have empathy, and I'm done trying to explain it or beg for mercy. I want a cat.
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PostSubject: Re: You look ok to me....   Sat Jun 09, 2012 2:28 pm

Aww bless you! It sounds like your going through a really rough time right now. [You must be registered and logged in to see this image.] All I can suggest is keep fighting! There is always hope at the end of the tunnel and we are always here and understand xxx
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VDubs
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PostSubject: Re: You look ok to me....   Mon Jun 18, 2012 2:02 pm

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Dyslexic & Special
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