OCD, Anxiety, Paranoia, and Hallucinations with Lyme Disease

I live with OCD, anxiety, paranoia, and hallucinations. These are some of my symptoms from Lyme disease. Luckily I have never thought I was crazy, like some other patients. I do know that I can’t tell doctors about these symptoms. Unfortunately, most would think I have mental illnesses. I don’t, but it can seem like I do. For example, they may thing I have Schizophrenia, because of my hallucinations and paranoia. I know that other Lyme patients have been put in mental hospitals and even jail. We have to be careful on what we say and who we say it to.

What it’s like to live with these symptoms…

I used to love the outdoors. I loved sitting outside in the grass with bees everywhere. I would sit by a beehive and let the bees surround me. It was peaceful and relaxing. Now I’m anxious when I go outside. I don’t know why. Maybe it’s because of the dirt and germs. I don’t like touching anything without gloves or something covering my hand when I’m outside of my house. It freaks me out. I also don’t like sitting on dirty places. Everything has to be clean around me. I can’t walk around bare foot in the house. I always have to wear slippers or at least socks. I don’t like sitting on the couch or chairs in the same clothes I wear in bed. To me the clothes are contaminated and I don’t want to get my bed dirty. I’m getting better with this one though. I dislike when people sit or lay on my bed. It makes me anxious, because I think it makes my bed filled with germs. I don’t like touching other people sometimes, because it makes me feel very nervous. I think I’ll get germs. I also pick at my skin and scalp until I bleed. I feel an uncontrollable need to always pick, that I do it without thinking. These are my OCD symptoms.

My paranoia and hallucinations kind of go together. I have paranoia all the time. I always think that people are out to get me, to attack and murder me. Even though I know that I am safe, I can’t help thinking these things. I can’t sleep with the lights off, because of the hallucinations. It scares me not being able to see anything. I picture and hear people. Not good ones… ones that are scary and evil. They look scary… dripping with blood and mangled. I can’t watch anything scary on TV, because it makes my hallucinations and nightmares really bad. I can’t even watch Harry Potter or Psych without getting scared. Sometimes I have insomnia due to my hallucinations. Some rooms or places freak me out. I hate the bathroom. Maybe it’s, because there’s always bad things happing to people in them in movies. I can’t take a relaxing bath. I have to watch TV and my mom usually sits with me. I also hate showers. I picture people dead in them or that I’ll be stabbed. I have to pull the shower curtain, so that only the clear part is showing. I have to be able to see out. When I wash my face in the sink I get uneasy. I think that someone is going to attack me, since I can’t see anything. I also can’t sleep with someone in the same bed. I think they are dead or that they look scary.

Maybe these are just my Lyme symptoms or maybe they are triggered from my past. I used to get hit and kicked from a bully. She also forced me to make out with her. I don’t know if my past combined with my symptoms made me so fearful. I do know that lots of other Lyme patients also have these symptoms though, so who knows.

My anxiety comes from all of these things. They all mix together for me. Luckily I can still go outside with my family. I know some people who can’t leave their rooms. I don’t go out at night, because it scares me. Even in the day I don’t like being by myself. When I first got really sick, I was terrified about being alone. I had to learn to get used to it, because I’m often alone. Now I’m a bit better. I can handle these things. I don’t have panic attacks anymore, at least I haven’t in a while. I know that I have these symptoms and that it’s not real. Hopefully they get better and I can live more normally soon.

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Awkward Social Life with Lyme Disease

When people ask me how I am I often lie. I think that all chronically ill patients can relate. We always say “I’m okay” or “I’m fine.” We aren’t, but that’s what people want to hear. When people ask how you are, often it’s because they’re trying to be polite. Usually they don’t want to hear your long story about your symptoms and medical history. Whenever I’m out being social (which isn’t often) I want to act as normal as possible. I want everyone to treat me like they would anyone else. I don’t want to be negative and all about my disease. It’s hard though, cause my whole life revolves around my illness. I don’t know what small talk is anymore or what it’s like to be a “normal” teenager. Often I feel like an outcast. I feel different and uncertain on how I should act around others. I don’t know what my friends go through on a day-to-day basis. All I know is being sick. I don’t remember what it was like being healthy. So when someone tries to talk to me, often I don’t know what to talk about. If I mention my disease the conversation dies and it becomes super awkward.

Tomorrow is Prom… I’m going to try to go hang out with a group of people. Some of them I know, some I don’t. They are going to get ready while I hang out. Then we are going out to dinner and taking photos. I wonder how it’s going to go. I have been really sick lately, so I  will definitely need my cane, maybe even my wheelchair. It depends on if I go to all of it. I know that I can’t go to the actual dance, because of my neurological symptoms. My mom said that the restaurant will be crowded and loud too. That is not good for me, cause I’m very sensitive to light and sound. For example, when someone is talking at a normal volume, to me it sounds like yelling. Everyone will be nice, but sometimes it can be petty uncomfortable for me to be social. I wish that I could be social without it being difficult for me. I wish that I could do everything I wanted. Unfortunately, that’s not how it is. It’s okay though. Everything will fall into place like its supposed to eventually, including my social life. For now I have my family, my Lyme friends, and a few other friends supporting me. In the future I can make new healthy friends. All I need is to be myself. That’s always been one of my values. If people don’t know how to act around me that’s their problem. I should feel comfortable being me. I shouldn’t feel embarrassed or ashamed about being ill. I don’t need to worry about what other people are going to think. I need to live my life to the fullest.

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The Good Side of Technology for Lyme Disease Patients

I used to be really bad with technology. I know many people probably don’t believe that, because teenagers are supposed  to be really good at it. I however, hardly knew how to use my email or the internet. Now that I have been really ill, I have learned to used technology pretty well. I am definitely not an expert, but I’ve come a far ways.

I used to think that media was bad. I still think that it can be bad in certain situations or for certain people. For me though it has helped me so much. Basically my whole life is online and through the internet. Most of my friends are on Facebook, Instagram and other social media sites. I also text and Skype my friends. If there was no internet or these social media sites, I would feel very alone and isolated. The way that I see what is going on in the world and to people around me is also through these sites. I am very lucky and thankful to be able to use technology in this way. I think that it is amazing that I can have a friendship with someone across the country, and even across the world. It’s an interesting way of living. I don’t go out that often, so this has become my world. Before I had face-to-face conversations with people; now I mostly text, call, or Skype. There is a bad side to social media though. It’s hard for me to see my friends go on with their lives. It’s hard to see people out in the real world living. For me, I get more good things out of it than bad. I still wish to be able to have a social life, but this is at least something. I feel grateful that I get to talk to other teens going through the same thing I am. This is how I stay connected to life.

I just recently got involved with all of the Lyme disease sites. I remember before I felt very depressed and isolated. When I met my first friend online, life instantly got better. I remember smiling for the first time in months. I was so exited. Now I talk to her everyday and we even watch TV together through Google Hangouts! It’s cool, because I have so much in common with her. I feel like with all my Lyme friends (not just her) we have an instant connection. We all know what it’s like to be chronically ill. We’re strangers, yet the first things we ask are, “how are you?” and “what treatments are you doing?” You know that you are going to be supported by this person.

I think that there is a time and place for technology. For chronically ill patients it can be very helpful in keeping us from feeling alone.


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Thoughts from a Lyme Patient

Whenever I go back to my old school and see all the kids laughing and hanging out, I wonder what it would be like to be one of them. When I go see my friends perform, I wonder what it would be like to be on stage with them. I guess I will never know what it’s like to be a “normal” kid in high school.  That’s okay though. I get an experience most people don’t get. Yes it can be lonely sometimes, but I have also met people I wouldn’t have. I have met my physical therapist who is now one of my friends. I have met my Lyme friends. I have met doctors and nurses; some good, some bad. I have gotten to see how people react to chronic illness and disabilities. I have seen how awkward and ignorant people can be with these two things. I have seen that as humans we don’t like to see each other suffer, so often we don’t know how to respond to illness.

I have learned about myself. I have learned how strong I am. That even if I think I am at my limit, I can continue on. I have learned who in my life matters to me, who cares about me, who knows how to deal with my chronic illness. I have learned how to let go and be okay with asking for help. I have seen fellow Lyme warriors who have gone through so much, yet they’re not giving up. I have learned how important love, compassion, patience, empathy, and kindness are. These things can make all the difference when going through hard times. I accept my illness and I’m okay with where I am. Yes I want to get better, but I know that everyone has struggles and this is one of mine. It’s okay to need help. It’s okay to be vulnerable. I used to think that I always had to be strong, and pretend that everything was okay. Now I know that it is okay to cry and be upset. But after you breakdown you have to pick yourself back up and keep going. I think that a lot of people think that being strong means that you can never show weakness. To me being strong is when you can be vulnerable and then keep living with hope. I think that it’s brave when people show emotions that others consider weak. I recently have been crying more in front of my family. I realized it’s good to be able to breakdown in front of people who care about you. It’s important to trust that they will be there for you and comfort you. I’ve also started being more honest with people about what is going on with me. I used to think that I shouldn’t share things about my disease, because it makes people uncomfortable. Now I understand that if I’m not honest, there is no way for people to know how I am. I want to educate people on Lyme disease and the only way to do that is to talk about it.


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Yesterdays Good Day with Lyme Disease

Yesterday I had a fashion show. It was very fun, but tiring. I woke up at 5:00am and had to be there at 8:15am. I didn’t feel well, but decided to go anyways, since I was exited. I had to stand in heels for about 3 hours and walk the runway multiple times. My mom said she was worried that I was going to fall over, since I had to walk so much. Luckily I didn’t fall or get too sick. It was also very loud which is hard for me, because I’m very sensitive to loud sound. Even though it was hard, it was very rewarding. I feel proud of myself for being able to get through that successfully. By the way, walking is a rare thing for me. My legs tend to stop working and I collapse unless someone is holding on to me.

After my fashion show we went to go pick up my mobility scooter (wheelchair). I’m exited I got one, because now I can get out of the house more, especially this summer. Last summer I wasn’t able to leave the house much with my family. I’m hoping now that I have one I can go downtown with them while they walk around. Usually I can’t walk much, especially for hours. Now that I have my own wheelchair I’ll be able to go out even when I’m feeling sick. I have been using my cane, but that is still tiring for me. Also when my legs stop working, it is hard for me to walk using a cane. Anyways I’m exited to have more freedom now!

We then drove to a different area of Denver to get lunch. We went to this small Mexican restaurant. The food was really good and we got to sit outside, since it was warm out. By this time I was very tired and we headed home.

When we got home I took a nap. When I woke up from my nap I was even more tired then before I decided to lie down. I never understand how that works. At around 7:00pm my mom, dad, and I went to an Indian restaurant for dinner. We go every Sunday. It is my favorite kind of food, and I tend to eat more there. We talked about the fashion show, my wheelchair, and other things. It was nice having dinner with just my parents. My sister and brother decided to stay home and eat pizza. When we were done we went home for the night. I went straight to bed, hoping to not feel too sick the next day. Luckily today I am not too bad. I am in pain and tired, but it was a long day for me and it went well. I’m hoping to have more good days like this in the future.

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