Hey Guys, Today I will tell you about me so maybe you can get a better feel as to where I am coming from. I have an invisible illness, well, more than one, but today will be about my Intracranial Hypertension aka pseudo tumor cerebri aka idiopathic intracranial hypertension (IIH).
I was diagnosed at my lowest point back in December 2014. I can see now that I had it for quite a while but was never diagnosed until I was almost blind. It took months for the doctors to get some stability back and have me back to a functioning mode. Not great mind you, but functioning.
The basic gist of the rare disease is that all of our bodies produce CSF, Cerebrospinal fluid , that is found in our brains and spinal cord. It is continuously produced and absorbed into the body. In my condition, my body is producing as much as everyone else but it is’t absorbing it. The fluid is constantly building up around my brain and causing extreme pressure which in turn causes so many problems.
There are horrible side affects, but at this point, i’m not sure which ones are caused by the disease or the medications to treat it. But trust me, being off the meds is much worse. I’m pretty sure I wouldn’t have lived this long without them, well, I definitely wouldn’t have wanted to. The pain is horrendous. And i’m not just talking about debilitating headaches.
My memory loss makes me sad. I used to be pretty smart. I loved to write. I used to write professionally but I noticed my abilities were fading one summer. I thought I had writers block. But it was just my brain not being able to use proper English. I wrote and started speaking very slang. Nothing proper at all. I’m used to the talking now and have improved the writing a bit, but certainly not the quality to call it writing. I think of it more like writing in a diary now. So let me apologize now for any and all errors you all see in any of my writings. I would fix them if I could find them but my brain just doesn’t work that way anymore.
Another thing that I have had to give up is my ability to be on my feet. This probably sounds minor to some but it is horrible for me. Before getting diagnosed I worked on my feet for ten hour shifts and never gave it a second thought. I loved to hike too. The one ability I had was that I could walk forever, as long as I went at my own pace for my breathing, my legs never gave out on me…or my back. Very strong core I guess. I was a runner as a teen so maybe that helped. But, now, I can stand up long enough to take a shower then sit, get dressed, then sit,do my hair and then sit. My feet have to be up. I actually shave my legs while sitting in my recliner now. I bought some really expensive nursing type shoes to see if that helped and some memory foam sneakers, they do seem to help a bit but not enough to make a difference. Now, I am not to proud to use a wheelchair but when I have mentioned getting one people can be pretty mean. Some laugh and some say that they would stay home before using one. I have put on a bit of weight since being diagnosed and I have my own fear of people looking at me in a wheelchair and thinking I wouldn’t need one if I exercised more. True statement. But easier said than done. So, my answer has been to miss out on so many things due to not being able to stand. I also have a very hard time in higher elevation, my brain loses a lot of function and I sleep a lot after spending a few hours visiting my mother.
Moving on…so now that you have an idea about my invisible illness, you can imagine what this all means financially. I have a degree and used to make fairly decent money. But, when I lost my brain function and walking abilities it limited my job options quite a bit. My writing jobs were done. I couldn’t go back to my on my feet job, so I had to look for something completely different. I finally found a full time job with benefits, I would be able to sit down but I had to make it through my training. I don’t even know how I did it. My co-workers liked me personality wise, but I would go home crying every night because they looked at me like I was a complete idiot. And I was. It doesn’t matter what kind of degree you have at that point. But thankfully they were desperate and needed a warm body in the position, so they kept me. I make a lot less than I ever have but it is an income and I have benefits. At this point I am very thankful for this. Not to mention that I love my co-workers. They are like a second family to me.
So, while I work full time and see my neurologist frequently, my meds have the pain under control as long as I understand my limits and consequences. I spend a lot of time at home in my recliner online doing research on everything. I read different versions of things to get a better understanding of that particular subject. I have learned so much about who I am and what I believe in. I look at life differently now and have kept my positive attitude.
Stick with me on this journey and you will come to see how I can change your life for the better. We all have ups and downs but it is the big picture that matters most. I am here with you. Lets do this together!