The story of Abby
I was diagnosed with Idiopathic Intracranial Hypertension (IIH) in February 2018 at age 27, after years of suffering from headaches, dizziness, fatigue, confusion/ brain fog, nausea, and many other symptoms.
With out all the medical jargon, my body basically produces an over abundance of spinal fluid which takes up space in my skull and that put pressure on my brain – literally. It can feel like my brain is in a vice that is being tightened and loosened depending on the pressure or day. I am lucky enough to be treating this with medication and not require surgery to insert a stent or shunt to drain the fluid at this stage.
The diagnosis changed my life. It taught me what is important in life, how to take care of myself and how to appreciate the small things in life I used to take for granted. It also made me feel validated, I wasn’t going crazy and all my suffering wasn’t in my head! Well the problem is my head but you get my meaning right?
It has been an incredibly difficult challenge and I am no means nearing the finish line, as there is no cure, but I choose to see the positive in my condition. It has taught me so much about myself and the inner strength I didn’t know I had. I now treat myself better, with more kindness and patience, instead of putting myself down for the things I can not do or change.
That’s not to say it had been all positive. Sadly I had to leave my job of 7 and half years last August due to my condition, I am still not able to work. I am no longer able to enjoy things like I used to due to sensitivity to sound, light and smells, trigger foods, and the weather! Yes, changes in weather and atmospheric pressure cause migraines ontop of the debilitating headaches.
I am in constant pain. My pain ranges from an average day of level 3 to the worst days being level 8-9. If I am lucky, I may get 10-15 pain free days a year. It could be a lot worse.
I am not able to do a lot around the house like I used to, so my wonderful supportive husband has really stepped up to the plate with cooking, cleaning and caring for me in general. I would be lost without him by my side through all of this.
Due to lack of medical professionals in the Northern Territory, I travel to Melbourne every three months to see my neurologist for treatment that I am not able to get in Darwin. All paid for out of pocket, no financial assistance of any kind.
I’m not writing this for sympathy, but rather to highlight the inadequacies of the health system in our country and especially in the Northern Territory.
I am sharing my story in hopes of spreading the word about IIH. I also hope that equity is achieved for all rare disease suffers, because we deserve better.