hey everyone. Im Amy. I was diagnosed early June somewhere, im not quite sure because since ive gotten sick its like im losing time. Or like im stuck in my own little bubble and the rest of the world is just passing me by. On the first of October i went for a checkup and it turns out im now "chronic". Im not really sure what to call it, being a chronic sufferer. Since finding out ive now sunk into a deeper hole, my friends and family try to support me but they don't really understand? People look at me and then say i look so well, like im lying about feeling crappy. Someone else said its like ur grieving.. Its like my old self died. People treat me like people treat others whose loved ones died. I miss being fun, and having fun and not having to drink a hand full of pills every few hours. Sorry for my little pity party.. haha. I sort of needed to vent, been having a bad week. Im glad to be on here now though, with people who know what its like.

Hi Amy, I'm Marlana. I understandwhatyou are going through completely. I have one friend who thinks i am faking.

Having a "chronic" illness is a tough road to be on, but there is always the possibility, especially for those of us with IIH, that things will get better. Different meds are available now to try, and they are coming up with new stuff every now and then too. And, there are different medical procedures that may help. Please, don't give up hope. You have a long way to go, with many, many things to try before all seems hopeless, even though it may feel that way now.
One of the hardest part is explaining to others who only see us from the outside, is how we are feeling on the inside. The write up, called "but you don't look sick", which we have on this sight, is a very good read. I have also found that many of the flyers and pamphlets that Heidi has made available for us, again on this site, help us in the "How to talk to ........ about IIH". Well written and easy to understand, sometimes if our friends, family, coworkers can "read" about what we have and what we are feeling, it gives them a clearer picture, and helps them "get it."

I have been dealing with my many symptoms for only 4 and a half years. Only, yea right. It seems like forever and talk about being sick and tired of being sick and tired!!! I am right there with you. But, each day I wake up and say, maybe today is the day that I will start to feel better. Maybe today I won't have a headache. Maybe today my headache won't last long. Maybe tomorrow will be an easier day.

Hang in there. It will get better. Honest. It will. Hey, maybe even tomorrow!!

Absolutely..you're definitely partying w/ the right crowd..lol. I'm so sick of IIH this week I could scream a little myself..I'm sorry it seems to be a global epidemic!
I think we all go through a greiving period..at some point we all have to acknowledge what we've lost and the life we'll never have. The trick is to just visit..wallowing will just bring you down! Unfortunatley, it can snowball..the lower you get the worse you feel. So give yourself a break and enjoy your party, but don't live there. Chronic pain is tough, but keep a symptom log and advocate for yourself if you're feeling worse or something isn't working..there are other options.
I also agree w/ Linda about utilizing the guides and print outs for family/ friends . Give them the information, invite them to appointments, and make yourself available for questions. Education and advocacy are key for us.
Most importantly, take care of yourself. Over time you'll learn your triggers and limitations, which will help. Finding the right treatment can be a long and frustrating process, but it is possible to live a fulfilling life w/ IIH..hang in there!!!!

Julie

thanx guys, it helps just to talk to people who have actually been there and are still there.. Im on Diamox now, but seeing my doc again in January, hoping things improve by then, and if they don't then i'll look at the alternatives and go from there. Wow!! Four and a half years!! Hats off to you!! haha makes me feel bad about complaining about a few months! And , i'll take a look at those flyers.

Amy, so much of what we know we have learned from each other. I am still a newbie compared to some of the other members. Some have been dealing with IIH, or at least it's symptoms for 10, 20 years! That's one of the things I love about this forum. There is so much info that's shared here.
What you are feeling is so very normal. We understand completely. Feel free to have a rant or just to ramble on whenever you want.

Hi Amy and a warm welcome to our group, I am so pleased you found us. It makes this disease so much more stressful when you haven't got the understanding and support of the people around you. I think because IIH is not a condition they are familiar with, they straightaway think it's just one of those things, or a migraine, especially if you don't look pale, hollow eyed and crawling, which I suppose is what they expect an ill person to look like nuhuh .

I don't think people understand the radical change this makes to your life, and you do often lose a lot of yourself to it, and yes, you do grieve, who wouldn't! It's hard to accept that you've gone from an active and independent person, to the one IIH makes you become, especially before it stabilises. I had this with my own sister for a long time, even she would tell you that she plain just didn't understand, and thought that I was not in my right mind and exaggerating. Unfortunately she now has IIH herself, and says that she just never realised till she got it herself.

The one thing I will tell you is to not focus on their negativity, but to focus on you and be totally selfish. Why do I say that? I say that from experience because to keep yourself together and adapt to this, you need your attention on yourself because you can only deal with one thing at a time. To try to deal with everything at once is very hard and very stressful.

We have lots of helpful information and booklets, and you can ask as many questions as you want to, and as I tell everyone, you can even have a rant. We are all here for you, you're not alone, you're now one of our IIH family.

Heidi

Im already starting too feel better!