I have been struggling to find words tonight to express how I felt, This Post right here pretty much sums it up…right now I am tired of putting on a happy face and pretending that everything is OK, call it what you will, Idiopathic Intracranial Hypertension, Intracranial Hypertension, Pseudo-tumor Cerebri, PTC, IH, IIH? It's all the same, It's a PAIN…and I am tired of suffering, I feel incredibly whiney right now, maybe its cause my meds are not working and its 2:41am and I am still AWAKE, maybe its cause I am in extreme pain, Maybe its cause I know I need a life back to be able to enjoy Lauren growing up…She is almost 8 and is missing her Mommy because I can't even walk in the grass with her anymore. At one point, this just affected me, NOW it affects, 2 people and two kitties as well…I am very loved, but seeing how it affects them is making this that much harder.
My name is IIH and I am an invisible chronic illness. I am now attatched to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause your head to explode and your vision to dim.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Try to have fun now! I also took Sleep from you and in its place gave you Brain Fog - Confusion and Disorientation. I can make you dizzy and sick; fill your ears with constant noise and a whole host of other things that no one else believes. Oh yeah, I can make you feel anxious or depressed too.
If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons. Maybe I chose you for your genes; maybe it was those pills you took, or the virus you never recovered from. Anyway, I'm here to stay! I hear you're going to see a doctor who can't get rid of me; I'm rolling on the floor laughing - tell him to keep trying!
You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, water pills, and sleeping pills, told you are suffering from anxiety or depression, given pills that make you tingle, stuck with needles, scanned, and when they get really desperate they'll drill holes in your head. You'll be told if you just lose weight and eat properly I will go away, told to think positive, poked, prodded, investigated by medical students, and MOST OF ALL not taken as seriously as you feel when you cry to the doctor how depressing life is every day.
Your family, friends and co-workers will listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you are just having a bad day" or "Well, remember you can't do the things you used to 20 years ago". Some will talk behind your back while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a person, and can't remember what you were going to say next!
In closing (I hope to keep this part secret) I guess you already found out…the only place you can get any support and understanding in dealing with me is with other people with IIH.
(As taken from Jonathan O'Donnell)
I cried when I read this, I have such a hard time expressing myself, about IIH in particular, and this says it all. To my IH Family: we are in this together!! Love you guys! <3