A New Blog? Go Away, Lymin

I made a blog! I’m no stickler for grammar or punctuation but more concerned with ideas and the flow of words. My inspiration to start a blog? I’ve been silent for 8 months unable to communicate. I need to express myself for my own sake and maybe I can be helpful (or at least amusing) to others.

I know what it feels like to lose my mind. A place where memories fade and thoughts slip away as soon as you conceive them. Chronic Lyme Disease has infected my world. During these times I feel like a helpless child lost in an unfamiliar town, trying desperately to retrace my steps but find myself stumbling through dark alleys. I’m lost in my own head. Recollection is like shuffling through a room of unorganized files looking for one specific piece of paper. I get distracted or frustrated and almost never reach my goal. It strips you of everything you love because all you know is this vegetable state of mind. (the best way to describe it is Alzheimer’s, and people with lyme disease are frequently misdiagnosed as such.)

Almost all the way through my recovery and my brain has only just started to work again. I am feeling better and the fatigue is lifting. However, in this more conscious state of mind pain has a whole new meaning. I can feel the rheumatoid arthritis come in bouts where my knees and back will feel like grinding metal. The muscle aches are a fuzzy pain throughout my body that makes every movement feel like I have just run a marathon and pushed too hard. There are literally hundreds of symptoms, from anxiety to vision/hearing impairments or having bags under my eyes. The worst are the intracranial pressure (a different kind of headache) which make my head throb for a week to months at a time. The pain from this is intense and a constant distraction.

I have had to fight for my life since I was 8. There is not much information on Lyme Disease, and even most MDs are very unaware of the condition or how it works.  This is why I was not diagnosed or treated until I was 10. By that time the bacteria had exponentially multiplied and completely took over my body and I was severely ill. What I didn’t know was that treatment would make my symptoms worse and the antibiotic medication would have adverse effects that are as bad as the disease. But the only other option was dying, so I took it. I picture a war between antibiotic and lyme bacteria, and if either is winning my body is worn out. Lyme disease stole a large portion of my childhood. Age 8 to 14 I do not remember. I did not learn much during those years and did not retain facts or social skills. In my heart that place holds a lost little girl in pain and believing that was who I was, that was my existence. In the recovery years ages 14 to 17, I went from being extremely slow to being moved up to AP courses and athletic. When the disease went into remission the first time, life became so easy and I floated through. All of a sudden I was smart when I had thought for so long I was dumb. It was a very strange experience but I was very grateful in the end.

I am so thankful to finally be able to form thoughts and communicate again. Lyme disease makes me mentally and physically slow so I have immense trouble taking care of my responsibilities and can’t be social the way I’d like to. Emotionally it has been extremely difficult, especially when I know the world will give me no slack. I am currently surrounded by people who do not know me as anything but what I am now. I do not have Lyme written all over my face like other diseases, and people do not see how sick I really am. 

The disease is strange and the severity frequently changes. It is so strange that it’s hard to explain (especially since I have a neurological disorder) and I find myself arguing with the world. I don’t want to do that anymore and I want to be in a place where I don’t care, but it hurts when people think I am being lazy or weird. It’s impossible to ask the world to be understanding when we live in a society where if you are not productive you are not valuable. But there are people in this world with real issues and many of them are ignored. I do not blame people and I do not want to come across as negative. I simply would like to educate others about a condition that is brushed under the rug and hidden. Lyme is constantly and purposely ignored by health care companies- but that is another political discussion best addressed by the documentary film Under Our Skin. Being given a disease also has taught me so much and given me a different perspective- but that is also another discussion for another day.

I have been sick for a year and a half and will be healthy again in 4 months if recovery stays on track. So excited :) !

 Future blogs will be more lighthearted, I promise!