Listen, I’m sitting here at 4:00 am, wide awake, and thought this would be the perfect time to write this.
Since Lyme Disease comes with nearly a thousand symptoms, I’m only going to name my worst symptoms.
In no particular order, might I add…
I know, “SB, why did you START with this worst one?” , couldn’t tell ya. Thankfully, I haven’t had a seizure in a little over 4 months but, they were the worst.
Let me walk you though it
- Everything goes numb and my heart starts to race.
- Starting from the legs, I shake and jerk. Keep in mind, back when this happened, I wasn’t able to even move my legs at all…
- While my physical body is numb, in pain, and screaming and moaning for help, my mind is numb. My mind is lost in a sea of nothing until I wake up from my trance of pain.
- Paralysis. While the seizure itself is over, my legs decide to just give up. I’m completely unable to move my legs. When I first started having these seizures, I would only be paralyzed for about 10 minutes. Until one day, after 5 hours I was still paralyzed. After being rushed to the ER and a 3 night/4 day hospital stay, I was left paralyzed for nearly 4 months. (With in those 4 months, I would have seizures very often)
The pain that I would have left over would leave me damaged. Looking back to it, I can almost feel the pain again and I’m beginning to cry. Just thinking about it makes me feel sick.
My migraine situation was (and still is) awful. I would get migraines almost 5 times a day, this has also calmed down a ton.
Taken at 1am, when I was finally admitted to the hospital after the people in the ER gave up and admitted me. They put a security band on me so I couldn’t “run away”. Keep in mind I couldn’t walk.
I remember, when I went to school, I would sit in class and get a migraine just from looking at my notes and then up at the board.
To releive my migraines, I have to sit in a dark room for up to 2 hours.
“Sarabeth, stop looking like you’re in so much pain! It’s annoying!!”
-My thoughtful sister :)
My insomnia started back in 2013/2014. It got to the point where I would find myself mixing Advil and Tylonel PM to get at most 4 hours of sleep. Since then, I’ve built up a tolerance to both of them. So now I take actual sleeping medicine (thank you LLMD)
Sometimes, I’m grateful for my insomnia; I do my best work at 2,3,4am! Other times, all I want is a good 7-9 hour sleep like a normal person.
But then again- who said I was normal?
This also started in 2014, which sucks. I was 14 years old and my does my body surprise me with? That’s right! Chronic Pain!! Whoohooo!!!!!!
When I went to school, I would cry all the time. I would cry in the bathrooms, in the nurses office, after school, before school, all because I was in awful pain. I would have to come in late and leave early most days due to how bad my pain was.
Eventually, it got to the point where I could say “I went to school two days this week!!” Or I would have my friends ask me if I were going to be coming into school that day.
I had teachers complain to me that I was never in school. Mainly my last block teacher. I almost never made it to the end of the day. I was in her class probably once a week. After a while, I just gave up. I stopped caring. I stopped caring about getting to class or finishing a day of school because I knew it wasn’t going to happen.
I was pulled out of school in the middle October. I’m proud to say I will never be going back to that school. Instead, I’ll be doing school at my own pace through a very alternative online homeschool program. No teachers yelling at me to finish. No one to yell at me when I’m not in class. Thank god.
Brain fog is not a medically recognized term but is a commonly used phrase that sums up feelings of confusion, forgetfulness, and lack of focus and mental clarity.
I still battle Brain fog today. It’s almost like dementia, but not.
I will completely forget what I’m doing or where I’m going. This happens a lot while driving. I will ask myself (or whoever is in the car with me) “Who are we getting?” “Where are we going?” “Why are we going here” and more. And I’M the one driving…Safe, right?
Back when I first started my IV meds, my brain fog was terrible. I would forget my name, what day it was, where I was, how I got to a place, etc.
Luckily, my Friends were/are always right there to help me when I forget.
Because of Brain fog, I have a very hard time reading. I used to read all the time, now I struggle to read a book.
Example: I’ve been reading this one book for about 3 months and I *think* I’m on chapter 3? I will read a sentence, forget it, and start it over. [repeat that now about 15 times]
That’s a freaking chapter a month.
Thanks to Lyme, eating has been a huge struggle of mine.
A few months ago, I wasn’t able to digest food at all. I would eat something and throw it up not even 5 minutes later. It got to the point where I was only able to have a pediasure and *sometimes* a jello a day. I lost so much weight.
This was taken close to the end of September- about a week before I stopped walking. I was about 100 pounds.
I went through tons of testing. My GI thought I had Gastroparesis. So I went to the hospital and had to take a “Gastric Emptying Study”. I basically ate radioactive eggs and they watched it go through my stomach and all. It turned out clear and fine. So Gastroparesis was ruled out, but I still couldn’t eat!
I still battle with it. I’m able to keep food down now, but only with the help of Zofran. I normally get 1 good, legit meal a day. I no longer feel hungry, it’s very rare if I do. Because of that month or so when I just honestly couldn’t eat, I got used to not feeling hungry. I now eat because I know my body needs the food- not because I’m hungry.
If I eat gluten my stomach feels like it’s being ripped to shreds.
If I eat dairy my stomach will just straight up kill me.
I’ve just gotten used to it.
Although, this has been a confusing topic since 2012, I’m not always the best at breathing.
I’ve had every test under the sun and I’ve tried every inhaler and pill to help, but nothing works.
Sometimes my lungs just give up on me and stop working, and the only thing that helps is Oxygen.
It’s really just a big mess. Actually- the last time I was in the hospital was because I stopped breathing in the middle of a show.
They basically just keep me in the hospital until my oxygen level gets back to 100% and my Heart Rate gets to at least 110bpm.
Speaking of Heart Rate…
My heart kinda sucks.
My heart beats “inappropriately fast” according to my cardiologist.
Along with that, I faint sometimes which is always a fun surprise in my day.
I can’t sit up/stand up with out my Heart rate going waaaaaaay to high.
I get super dizzy really easily.
What did we do for this, you ask? Why more tests, of course!!
I had a tilt table test and a scan of my heart- everything turned out clean and fine. Only a little leakage in my heart (?) but apparently it’s okay??
I also had to wear this stylish heart monitor, which I named Francis.
I also get the joy of experiencing heart palpitations…which also sucks. Shocker, I know.
I have really bad arthritis in my fingers and knees. It gets really bad on cold days, but I deal with it everyday either way.
Going up stairs is a daily battle I face.
I used to crawl up the stairs in tears.
Now, I walk up the stairs with a smile.
I wish I didn’t have to think twice about bending down though, my knees are just awful.
Bikram yoga has helped me so much with my knee pain.
Now, I just picked a few of my worst symptoms. Sadly, there are many more.
I still battle a lot of my main symptoms everyday. Since I started walking, I get the same old “but you don’t look sick” and honestly, what does suck supposed to look like?
This is what someone fighting a chronic illness looks like.
Mine just now happens to be an invisible illness. Before, when it was obvious, I was treated like I was sick. Everyone treated me like I was so gentle and sick.
Now? (Almost) Everyone treats me like I’m some teenager complaining. No, I don’t want to be treated like I’m sick, but I also don’t want to be treated like a lazy teenager.
Certain symptoms are worse than others, but I get through it. Everyday. No matter what.