The Less-Than-Pleasant Truth About My Life With Lyme Disease

I’m so tired of fighting. Fighting to do more than I’m able to do, fighting to get up in the morning, fighting for my life within my own body.

I’ve been sick for over two years. When I really look at it, I’ve only ever really had one good year of health. Before that I fought severe depression, anxiety and panic disorder, endometriosis, irritable bowel syndrome (IBS), thyroid issues, iron issues…all of which I now realize may have been caused by undiagnosed Lyme disease even back then, but it’s so hard to know for sure. In my one good year I really saw the light. I worked my ass off, sometimes in three jobs at once. I lost weight and felt better than I ever had before. For the first time in my life I really felt happy and believed that with a positive attitude and hard work, I truly could do anything.

Then I started to get weak. I wasn’t recovering well from my workouts and I began getting numbness and weakness in my limbs. Nerve pain would shoot through my body like fireworks, my left eye would get pain that can only be described as an ice pick jabbing through it, sciatic pain would shoot down my leg, my whole body would feel overwhelmed like it was in fight-or-flight mode at all times and noise levels that were usually average were now unbearable.

Then came my hair falling out and exhaustion I’d never experienced before. It felt like (and still feels like) my body is filled with lead and I’m attempting to walk through thick, black tar. The room would spin and the dizziness would begin and my heart would palpitate for no reason. I couldn’t concentrate at the best of times but when the nerve pain would shoot through me like an electric shock all bets were off. Sometimes I feel shaky on the outside, but what’s worse is when I feel shaky on the inside, as if every part of my body is vibrating against my skin, my eyes against my eye sockets and my brain against my skull. Then came the involuntary movements. Muscle jerks and twitches, legs and arms jolting without me telling them to, once in a while so bad I imagine it looks like I’m having a seizure.

Then there’s the pain. The pain that fluctuates in location and intensity but never seems to go away. Migrating from my joints to my muscles to my bones to my organs, and when it gets to my head there is nothing I want to do but die.

Sometimes my vision changes. Sometimes it blurs, other times my depth perception goes, sometimes it’s my night vision. Other times my eyes are simply in so much pain I can’t even open them.

I get confused and I forget things. My long-term memory is there so I can thankfully remember things like how to cut hair and do my job. But other things slip away from me, like names, where I’ve put things, etc. My keyholder has been in the same place for months, and yet the other day I automatically went to its old location to hang my keys. Today I called my cousin by the wrong name and didn’t realize it until she corrected me. I forget where I’m going or what I’m about to do. I forget conversations and every morning when I wake up, before I open my eyes, I forget where I live and I think I’m in my childhood bedroom in my parents’ house. Last night I ordered pizza and by this morning I was surprised to see it in the fridge. The delivery boy told me he’s my neighbor and told me his name, and by the time I closed the door it was gone. All I know now is that it started with a J.

I have soaked the bed with sweat overnight more times than I can count, and most days at any given time some area of my body will be slippery with sweat only caused by infection.

I either can’t sleep at all or sleep too much. I can sleep for 10 hours straight and still wake up feeling as if I haven’t slept in a month. My nightmares caused by the bacteria feel as real as anything until I jolt awake screaming, scaring the dog.

I have collapsed, lost my ability to speak, experienced hallucinations and suicidal thoughts that are not my own. I have had panic attacks, severe jaw pain, neck stiffness, muscle weakness, seen shadows and movements that are not there and most recently discovered I have POTS (postural orthostatic tachycardia syndrome) brought on by Lyme, which causes my heart rate to spike as high as 138 bpm just for having the nerve to walk 10 steps into my kitchen or get up off my couch. Even while laying in bed it has spiked over 100, beating so hard it feels as if my heart is attempting to break through my rib cage.

I have learned that most people who you believe will be there for you through anything really don’t care, and that others will come out of the shadows and surprise you with their support. I have learned that, in my case, no one besides maybe a boyfriend or parent really brings food or sends cards or shows up to help you cook or clean or grocery shop. I have learned that the people who will support you the most are the ones who are also too sick to care for themselves.

I’m tired of lying. I’m tired of debating with myself every time someone asks me how I am whether I should automatically lie and say I’m fine, which is what I usually do, or if I should burden them with the truth. Not that I can explain the truth anyway, and if I just say, “I’m shitty, how are you?” it makes people uncomfortable and they don’t know what to say. So instead I lie and say, “I’m fine, how are you?” or “I’m good, thanks” or whatever other lie comes out of my mouth to make the person I’m speaking to more comfortable.

I’m tired of having to ask for help and I’m sure the people I go to are tired of it too. I’m tired of burdening others with the things I’m unable to do for myself or unable to do alone. I’m tired of feeling guilty for all of the things I can no longer do. I’m tired of feeling helpless when I’m too sick to cook or clean or get groceries for myself. I’m tired of having to sit in the shower rather than stand on the days I’m too weak or too dizzy. I’m tired of having to push so hard to do the things that were once second nature.

I’m tired of having to budget for treatment and wonder how much more of it my parents and I will be able to afford, when my treatment should be covered by our medical system that I pay taxes and MSP for. I’m tired of being denied by our medical system and talked down to by our doctors who are not properly trained in Lyme disease. I’m tired of being sent for psych evaluations because since a typical Canadian doctor doesn’t know how to explain what’s wrong with me, so it must be “in my head.” I’m tired of having to defend myself to people who don’t believe in Lyme disease. I’m tired of having to defend my treatment plans to people who have other beliefs. Most of all I’m tired of going into a doctor’s office and being the smartest person in the room.

I’m tired of faking it. When I’m out in public or with other people, plastering a smile on my face and pretending like I can’t feel every ounce of the war happening 24/7 inside my body. I’m tired of hearing everyone who doesn’t have Lyme or any experience with Lyme tell me their miracle solutions that will cure me. I’m tired of mundane, meaningless small talk with people who don’t know what to say.

I’m tired of feeling like I can’t go anywhere without my boyfriend or immediate family member with me. Someone who knows the inner-workings of my illness so that if I get sick to my stomach, or confused, or forgetful, or weak, or collapse, or need help getting up some stairs, I have someone. I’m tired of feeling like I need one of those few people with me at any gathering or event in order to feel safe.

“This must be so hard for your parents.” “This must be so much for your boyfriend to take on.” Yes it is! You know who else it’s hard for? The person living with the disease. I’m tired of feeling so unbearably guilty for how hard it must be for everybody around me. I’m tired of being a burden. I’m tired of being sick. I’m tired of not being able to do things for myself. I’m tired of protecting everyone else’s feelings but my own.

I’m tired of finding the silver lining just to make other people more comfortable.

So there it is. The most truthful I’ve been in a long time, including with myself. Tired does not even begin to encompass all that I’m feeling. Don’t get me wrong, I still have positivity in my life – I still have laughter and happiness and love, but this is the less than pleasant side, the hard truth side, of my life with Lyme.

This post originally appeared on Strengthen Your Body, Not Your Excuses.

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