I wrote this blog a while ago and never posted it. I don’t want to sound like I am making light of this aspect of Lyme. I also don’t want it to seem that I am trying to qualify “crazy’. I have been comfortable being described as crazy in my past. I am different, I do things my way, I do many things others don’t want to and I think in a way very unique to me. I consider that crazy at times and I like that part of me. But I have been speaking recently to others about what it feels like to mentally be fighting Lyme and I realized there are so many levels to that answer. Like many battles in life, there is a huge component that is mental. And not only does this physical disease affect your body, it invades your brain. On top of all of that, 3 years of misdiagnosis wipes away most of what you know, believe and trust about yourself. So you begin a lifelong battle to fight for someone you don’t trust, in a body you don’t know and with a mind that is not in the game. That feels “crazy”.
I recently watched the Avril Lavigne interview where she talks about how people made her feel like she was “crazy” when she was unknowingly battling Lyme for several months. I can’t say anyone said “you are crazy to me” but with the symptoms, side effects of the disease, lack of awareness and misdiagnosis, “feeling crazy” is an understatement. Now, don’t get me wrong. I have been a little proud over the years to call myself crazy. But Lyme over a period of time takes crazy to a whole new level, one I was not comfortable with.
Early Crazy – you swear something is wrong with you. The symptoms are well beyond anything you have experienced before and yet, everyone tells you, you are healthy. This doesn’t feel healthy, but they say it is healthy. I would have sworn there is something more serious going on. How could I be so wrong?
Continued Crazy – now the symptoms are mounting. You have decided to accept some as just part of life, but new ones are emerging. Are you looking for them? Are you somehow doing something horribly wrong to create them? Have you become a hypochondriac? Why does it feel like your body is literally falling apart?
Remorseful Crazy – you finally admit that being crazy earlier in life is coming back to haunt you. People told you shouldn’t do those adventurous things. They said you were too hard on your body. They swore you would break down before you were very old. Guess they were right. Of course, you could go from endurance racing to every limb, system and basic function being affected, because you caused it.
Pessimistic Crazy – you used to be so positive and now your negative views are physically affecting you. If you could just ignore the symptoms and get on with life, they wouldn’t seem so bad. You used to motivate people to be active and adventurous, now you are the exact opposite of what you strive to be. Quit thinking about what you can’t do and move on.
Forgetfull Crazy – Why can’t I remember that? Strange. Must have too much on my mind. Got to get myself organized. Forgetting too many things lately. I hope no one notices. I will gently ask a few questions and get things sorted out and get my act together so it doesn’t happen again. At least I can admit when I make a mistake. Shit, I did it again. This is getting embarrassing. How does that keep happening?
Brain Freeze Crazy – I can’t sort out my thoughts to write this email. Why is something so easy, so hard for me to put together? I must have too many interruptions. I need to work at home for a day. Maybe I need a vacation. Wow, if anyone knew how long it is taking me to write this email, they would be horrified. I wonder if it is not making sense to just me or if it will not make sense to the reader? Why can’t my head figure this out? Maybe I will leave it until the morning when my brain is clear.
Brain Cramp Crazy – oh my, what was the word I going to say? It was right on the tip of my tongue. It’s gone, wait a second, pause, it may come back. Now I don’t even know what I was saying. Everyone in the room is looking at me like they are totally confused about what I was talking about. I can’t remember what I was talking about. This is embarrassing. Why do you always have to share your thoughts? Next time, just wait and maybe you will say it more concisely…or not at all. That would be safer.
Walking Crazy – I couldn’t walk this morning. How odd does that sound to say? You can’t tell anyone that – how dramatic would you sound. They will think for sure you are exaggerating. As if you couldn’t walk. Just sit on the bed and move your limbs until they can support you. See, you can walk. You were just asking it more than it was. Good thing you didn’t say anything. That would have been embarrassing. Except, I don’t know if leaning on the wall down the hallway, is considered normal.
Drunk Crazy – OMG I just fell into my desk again. Is it sticking out too far? I have to quit rushing. Maybe I am lightheaded. Am I drunk? I feel drunk. I walk wobbly at times. It’s like I get thrown off balance for no reason. I have been knocking things over lately. I have never been very coordinated. I was always called a bull in a china shop.
Dream Crazy – you don’t have dreams anymore. I wonder why that is? I literally don’t wake up and remember a dream. It’s been months, maybe years since I have dreamed. Hmmm I never realized that until now. But you know, I can’t picture my life lasting much longer like this. If all of this is getting so bad over the last few months, I can’t even picture myself a few years down the road. Not much to look forward to.
Lyme Crazy – why would you argue with a doctor that you want to go the US to be diagnosed by a Lyme Specialist. Why would you insist you have any idea what’s wrong with you. You can’t doubt the blood tests, they were all negative. Quit trying to make something of nothing. Who diagnoses themselves and why would you want Lyme? Oh wait, maybe because that is the answer to ALL of this craziness.
Overthinking Crazy – I would just like to stop thinking about this for a day. I don’t want to wonder about my symptoms. I don’t want to talk myself into something really being wrong, then telling myself nothing is wrong. I don’t want to worry about what I say, what people are understanding, why I can’t do something, what thing I am going to do next, what new thing will pop up and surprise me, how I am going to cope, how I am going to hide, how I can get it all done, how I can get by just another day without looking crazy. I just don’t know how.
The thoughts go much deeper than these examples. I think the major point is the thoughts, analysis and self-assessment never stop. From the outside all looks perfectly fine, everyone tells you it is perfectly fine and it’s just a crazy mess inside. So when you see Avril Lavigne quite emotional about her story, I believe it’s partly sadness from a time where she was so helpless, she didn’t even have herself to depend on. But, it is also a release of relief that she can find herself again, she was right that something was wrong and she wasn’t crazy.