Just two days ago, I wrote about how I had two days of no symptoms. Yesterday though, it was like “Hi, remember me? I’m here to kick your butt again!” I felt horrible all day. My head was completely messed up and I just felt like I wanted to curl up in bed and stay there. Today was my scheduled day to work at home. So it was good to be able to rest and just use my laptop to work from my bed.

But what I really want to talk about today is just the lack of understanding and compassion about this disease. First, Lyme disease is chronic unless you are treated within 3-4 weeks of the tick bite. There is no cure outside of that time frame. Did you read that? NO CURE. Because of the medical community’s blindness and ignorance towards Lyme disease, treatment within 3-4 weeks didn’t happen for me. So it’s highly probable that I will be dealing with this for the rest of my life.

This is the definition of “chronic”:

A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects. The term chronic is usually applied when the course of the disease lasts for more than three months.

I’m in month 7 of my treatment and I’m getting very close to the one year mark since my symptoms began. It’s chronic. Hopefully, I will have long periods of remission where I generally feel like my old self. But I’m not there yet.

Hopefully, many of the symptoms I’m still having will resolve and are not the result of permanent damage that has been done, but only time will tell.

Hopefully, the people around me will finally actually listen as I try to explain this and stop asking me why I’m not better yet (with an insinuation that it’s somehow my fault or they don’t believe I’m sick at all).

Hopefully, people will recognize that it’s not really possible for me to put into words how I feel on the inside and I have absolutely no explanation for why I look “normal” on the outside. I know I don’t look sick – but that doesn’t mean I’m not.

I struggle with keeping much of what this disease is doing to me out of the limelight (like that play on words?!). I do my best to hide it from coworkers, my boss and friends. For one, I don’t want others to know just how jacked up my head is on some days due to neurological symptoms (um, what did you say your name was again even though I’ve known you for years?). Two, I feel like people are so sick of hearing about me being sick. And maybe I don’t blame them. But I also hope they, especially some of my “friends”, never feel as alone and isolated as I’ve felt over the past year in my struggle to deal with this.

Hopefully, people will take the time to actually do a little research into what Lyme disease is and how it’s affected people’s lives before giving me asinine advice like “stop all these drugs and let your immune system handle it”. If my immune system was doing what it was suppose to, I would have never gotten sick! My immune system doesn’t work because of what Lyme does to it. Would you tell a cancer patient to just stop chemo and see what happens? Would you tell a dialysis patient to just give it up and go to the house? Of course you wouldn’t. And their doctors wouldn’t tell them that either.

But that’s where Lyme is different. Because people do tell me that. And the doctor told me that too. Just stop taking everything and let your body do its thing. My body doing “its thing” with this infection in it consists of mixing up words, not being able to speak in coherent sentences, not remembering from one word to the next what I was talking about, not remembering important events from my past (or conversations from 30 minutes ago), an unsettled, dizzy feeling in my head for hours on end, out of body type experiences, drenching night sweats, panic attacks, joint pain in my knees to the point of limping, heart palpitations, intolerance to cold one minute and heat the next, light sensitivity, sound sensitivity, so many food sensitivities that it’s easier to tell you what I can have than what I can’t, Bell’s Palsy where half of your face droops, tingling and burning sensations in my arms, stiff neck, visual disturbances, feet that feel like I have been standing on rocks for hours on end, and a fatigue that can’t even be explained and is not relieved by any amount of sleep or rest.

But yes, let’s just stop all of my treatment and let all of these symptoms take over. After all, that sounds like a great life to be able to live. I mean who wouldn’t want to be like this day in and day out? The next time you feel inclined to tell me that, why don’t you trade places with me for one day? How about you take on just the neurological symptoms alone and tell me how you feel about just stopping my treatment then?

I want to be well again. I want to be able to do things with my husband and our son without worrying about whether I have the stamina to do them. I want to be able to take him to the zoo, not have guilt because I know there’s no possible way I can walk that much in one day without a rush of symptoms. I want to have interest in things again, to be able to feel emotion and to be able to express myself in written or verbal form. I don’t want to be intimidated in meetings because I never know when I open my mouth to speak if my brain is going to fail me.

I want to be able to eat normal foods like a normal person instead of asking for an allergen menu and begging them to avoid cross contamination of my food. I want to be able to have a single slice of cake on my birthday. I want to be able to go to the grocery store without spending all of my time reading labels looking for hidden gluten or sugar and over and over again, replacing the product back on the shelf and walking away. I want to have something to drink besides water.

I want to be able to do things with the money we work so hard for other than pay for doctors who don’t take insurance, more supplements than I can count and herbal medications that I have no idea if they actually work. I want to be able to go on vacation without calculating in the back of my head how many doctor’s appointments it would equate to if we didn’t go. I want to wake up in the morning without dread because I know I have to swallow more than 20 pills.

I want to come home in the afternoons and not have to fight the urge to go straight to bed. I want to be able to have the energy to play with my son. I want to be able to be excited when he’s standing beside my bed in the morning saying “Mommy, wake up, the sun is up!” I want to be happy the sun is up too.

And one day all of this will happen. One day I will be in remission. One day I will be me again. But until that day comes, I just ask for your support. Educate yourself about this disease and if you’re not willing to do that, then kindly keep your comments to yourself. I’m fighting every day to recapture the person I used to be before this bacteria took over and I don’t need to be fighting your ignorance and condescension as well.