Living With AE was started to raise awareness about, educate however possible about autoimmune encephalitis. By blogging about my personal journey, posting related science articles, and providing some inspiration, I hope to give back and help those living with autoimmune encephalitis or any illness or issue.
WHAT IS AUTOIMMUNE ENCEPHALITIS
Encephalitis is an inflammation of the brain. It is caused either by an infection invading the brain or through the immune system attacking the brain in error. Autoimmune Encephalitis is when your body’s own immune system attacks your brain. Learn more about autoimmune encephalitis by reading article series WHAT IS AUTOIMMUNEENCEPHALITIS
MY STORY (READER’S DIGEST VERSION)
In 2016, I started feeling like I had a bad case of the flu even though I didn’t have typical symptoms like coughing, sore throat, stuffy nose, and fever, but I did severe body aches, headaches, and fatigue then things started to get strange.
You have probably heard of brain fog. Well, it was a dense fog. I started having issues remembering things like what I just did or did the day before as well as how to do things. Then I started using furniture to walk which declined into crawling and then into having to be carried by friends. Also, I developed nystagmus which is when the eyes bounce up and down or side to side and my childhood corrected diplopia, aka double vision, returned.
I was misdiagnosed by two doctors. One said I had vertigo and sent me home with pills and the other said I had dementia and I was trying to place me in a nursing home to live out what was left of my life. Luckily, at the time, I had a friend named Michelle there. READ MY FULL AUTOIMMUNE ENCEPHALITIS STORY
MY NEW NORMAL
I still have to ask over and over what happened because of a long-lasting cognitive issue which is a side effect of autoimmune encephalitis. By writing, I hope to maybe trigger something that will bring back all the memories I have lost as well as somehow help someone else.
As I write, I may have the events jumbled up or thoughts scrambled so, I apologize and I will correct posts as I find discrepancies. Also, I have to verify things over and over because I can’t tell what I actually remember or what I am told or what is an actual memory or something thought up by me. This is my new normal.
WHAT I WANT FOR YOU
To everyone going through anything…I feel for you. Sometimes it will seem unbearable and you may feel like giving up. But, you have to keep pushing through each issue each day. If you take issues in parts instead of all at once, it is so much easier. However, if you feel you are truly at your wits end, please seek professional help. Friends can be helpful, but sometimes their own wants may clash with your need for help. So, seek nonobjective professional help.