Hi everyone,

I'm so annoyed! :Angry: I went for my third visual fields today, even though it is my third I have never been told what is exactly going on in my eyes other then my left eye is bad and my right eye is worse had have lost a lot of visual fields (this was by my neurologist). After having to wait an hour and a half even though I had an appointment and had to be left on my own even though my husband is my carer because he had to pick up our son from school. I was finally seen but found it really difficult because I was really tired and at first the lady kept getting non matching results. We did the visual fields and the lady toke me back to a room where she showed me coloured numbers in coloured circles. She said my coloured vision was fine but she wanted to put dye in my eyes to check my tunnel vision. When the doctor arrived in the room she said to him about doing the dye and he said "no you need to get on". I am so angry because this is the first time they were going to do this and take my symptoms seriously! Its not my fault they were running behind! I was told there have been no change since March 11, they haven't got worse or better but my last LP was in May so the pressure in my eyes had been realised. He wants to see me back in six months! I just want them to take my eye problems seriously! I have constant blurred and double vision, see black spots, white lights that float in my vision like snow, seeing lights and shadows out the corner of my eyes but when I look nothings there and a twitch in my left eye.

This week has been one hell of a week for me

I have had to deal with a stupid optician who didn't know anything about IH and then to hear the council isn't going to fix my front door although it was their cowboys who put a to small of door in a frame when I first moved in. I also had a argument with my cousin because she believes I'm making up my illness to "screw the system" and claim disability! Then I spend £45 on a massage because due to IH I have been suffering with head, neck and shoulder pain which is sending shooting pains down my arm for about three months now and my mother-in-law has a go at me for spending "that kind of money" on just a massage. I've also had to go to a social services meeting about my nephew because his mother is neglectful so they wanted to know "how family can support them" (their just lazy)

The worst thing I've had to deal with is finding out my brother was raped when he was 9. I don't know how to deal with this or how to support him what do I do?

I have had this all with no sleep....

I'm sorry you had such a frustrating optician appointmennt, it's hard when the different specialists don't communicate with each other.

Hopefully you will have a great weekend and next week, since this one was so hard.

I am a survivor of childhood sexual abuse and no one in my family (except the perpatrator) knew until I told when I was in my late 30's. For me the best support was knowing that my sister was there to listen if I felt like talking about it, but wouldn't push if I wanted to talk about something else entirely different. You can't do anything to change what happened, but you can let your brother know you love and support him.

Take care and I'm send wishes of good sleep to you.
Betsy

I am so sorry that you're having such a horrific time0, and I bet you haven't had time to catch your breath . The way you were dealth with for your visual tests is totally unacceptable and I suggest you talk to PALS who will listen to you and mediate for you to get the best treatment for you etc. I've been to them myself when I've had similar issues with Ophthal and Neuro, and they have been immense help.

As to the council not fixing your door, I would go onto their website and look for their page or information about repairs and also check your housing agreement. If you don't get any joy, write to your local MP and talk to Citizens Advice.

As for your Cousin, [You must be registered and logged in to see this image.] you could either tell her to Google IIH, point her here or to the IH Research Foundation website, and I would be inclined to tell her that as it's rare, it's not known if it is passed through families, and it could just as easily be her who can get it. Ignore her remarks , as they are little more than that, , we all have at least one family member and friend who have the same attitude, so rise above it and don't let them see how it hurts you.

It is their fault they haven't bothered to find out more and be sympathetic and understanding, not yours, and it is none of their business how you deal with it and your symptoms. It's about you, and if massage helps that is the main thing. You do what you need to do to alleviate them.

I am so sorry about your brother, you must be devastated , and I know you wioll be there as much as you can for your brother, but pace yourself or you wont be any good to anyone by making yourself ill. WE're always here as you know, and I'm happy to give you my number if you need a chat anytime.

Love Heidi xxx

Thanks ladies! I have just come to a point where I'm fed up and mentally low, I'll be ok just got to focus on positive things and ignore the negative until I'm well enough to deal with them.

Feel as though everyone blames me and See's me as an inconvenience especially when they argue about "who's going to help me".

In regards to my cousin I have explained my illness and the fact that I have worked and it can happen to anyone ect so I have just blocked her as she is never going to understand and doesn't want to. She's ignorant and I just can't deal with it.

I'm there for my brother as much as possible but sometimes he wants to talk detail and I just can't cope with hearing it, I was nearly physically sick. I think he needs to talk to a support group but don't know where to start.

The National Association for People Abused in Childhood might be really helpful for him, they have a free support line and it's a registered Charity.NAPAC

I will let him know xxx