Most people around me don’t know what it’s like to have a chronic illness with no cure. They don’t know what it’s like to be severely sick, but have people tell you you’re crazy and making it up. To tell people you have Lyme and for them to not think anything of it. To lie in bed all day with crazy symptoms feeling like you’re slowly dying. And to be honest, you are. Most people don’t know anything about Lyme disease, but they especially don’t know that it is fatal. The hardest part about having a chronic disease that no one believes in, is you hardly ever get empathy or support. This sounds horrible, but sometimes I wish I had Cancer. Whenever someone says they have Cancer, everyone always wants to help them and they get so much empathy. I know people who have had Cancer and it’s a totally different experience then what I’m having. Some of them were better within a year. They had support. People believed them. I know that many Cancers are not curable and that it is a horrible disease, but Cancer gets way more attention and empathy. The crazy thing is, there are thousands maybe millions of people with Lyme in the world, yet no one knows much about it.
I remember when I started getting really sick. I couldn’t take showers by myself, couldn’t get a glass of water, sometimes I couldn’t walk down the stairs without help. I felt useless…
Most people don’t know what the symptoms of Lyme are… Now the complicated part is that everyone is different. We all have different symptoms due to different co-infections. Also it depends on how long you’ve had Lyme and how strong your body is. I’ve had Lyme for 9 years and I have a very low immune system.
Here are my symptoms: Chronic fatigue, Insomnia, Cognitive issues (hard time spelling, word retrieval, memory), Joint pain, Sharp pains, Nerve pain, Arthritis, Allodynia, Dystonia, Depersonalization, Derealization, GI/menstrual cramps, Digestive problems (nausea, no hunger/thirst, bloating, stomach pain, dry heaving etc.), Epstein Barr (CFS), POTS (heart palpitations, sharp heart pain, lightheadedness etc.) PTSD, Aches, Muscle spasms, Lung pain/pressure, Hard time breathing, Low SATS sometimes (use supplemental oxygen), Dizzy, Fever, Night sweats, Hot flashes, Body temperature is off, Skin burning, Super Itchy (give myself welts from scratching), Whole body weakness, Hormone problems, Sore throat/cough, Sensitive to light, sound, and smells, Ear pain (TMJ), Ringing in ears, Headaches, Migraines, Inside body shaking/buzzing, Twitching, Paralyzation, Feeling bugs crawling on me, Feeling airy (like I’m a ghost), Hallucinations, Depression/suicidal, Vertigo, Bartonella rash (tiger marks), Numbness, Anxiety, Paranoia, Fear, Eye sight problems, Muscle pain, Feeling like your brain is short circuiting and can’t tell your other body parts to do things, Feeling like you have the flu constantly, Sharp skull pains, Brain buzzing/shaking, Seizures, Seizure auras, Can’t speak/muteness, Restless leg syndrome, Feeling like my limbs need to be ripped off.
I probably left some stuff out, because honestly I forget about some of my symptoms. When you have so many things going on for so long you get used to it.
I wrote this so that more people know what it’s like to have Lyme and what some of the symptoms are. Crazy thing is, I’m pretty well off. There are a lot of people who have it worse then I do.