// August 18th, 2010 // 10 Comments » // Eric's Blog
My Twitter hashtag this morning is #NoEndInSight. That sums up my feelings today. I try to approach this disease with as much finesse and charm as I can. I believe somehow maybe I can charm the little suckers out of my body with a good smile. Please note: This not an acceptable form of Lyme disease treatment, but it was at least worth a shot.
I can’t begin to tell you how sick I am of this shitty disease. Every day for almost 16 months now my entire life has revolved around Lyme disease. I have been treating Lyme disease now for over 15 months. Anytime I start to feel like this I immediately feel guilty because I’m still “new” to this. How sad and disappointing is that? To have put so much time and effort into it to know you’re probably not even halfway there yet?
I know people who have fought this disease 20 or more years. Yes, I’ve had it that long, but without knowing it. I guess ignorance really is bliss. While my body was suffering and I was going from one unexplained health problem to another, I at least wasn’t this sick. I had no idea what I would have ahead of me. Do I want to go back in time and undo all the work I’ve put into this? No. But do I want to go forward in time and do this anymore? Abso-freaking-lutely not.
My patience has worn thin. With everything. What my life has turned in to, my daily schedule, the diarrhea for the first few hours every day because of so many antibiotics I’ve taken, the cost of this disease, the toll it’s all taking on my family and friends, the loss of the enjoyment of life. I don’t know when, but at some point Lyme took all the enjoyment out of life and turned it all into one big chore. I hate chores. You can “rename” my favorite thing in the world and call it a chore and I will no longer want anything to do with it. That’s just me.
My life has now become a chore. I’m going through the motions, and I no longer have the energy to pretend. The tone of this post is negative, I will gladly admit this. But it doesn’t change the fact that it’s how I feel, and it’s how many of you feel day after day.
If I had had any idea 16 months ago what I was in for, I don’t know I would have accepted it. It has been a horrifying experience. Yeah, there’s always good along with the bad, but if you want to read about that then you’ll have to go read a different post. This post is about honesty.
Lyme bites. It’s not just a cute name for a website, it’s the truth. It all sucks. I don’t know if I’ll ever get better, and that is an awful realization. There are people who beat it, or who gain a good portion of their life back and then learn to manage the disease. There are also others who treat and treat and treat but just never get better. I will have no idea where in that spectrum I will fall until it happens. That means every day is a giant question mark. It’s disconcerting to live with such uncertainty day by day, hour by hour, minute by minute.
I’ll pull myself together again with time and get back on the train. (The getting back on the horse analogy is getting old after 16 months, today I’ve decided to get back on the train…don’t question me, just go along with me…it’s much easier and will hurt your brain less.) But I’m exhausted from the fight, and can’t seem to get any rest or relief.
Today I go back on one of the medicines to attack the antibiotic cysts throughout my body. So I feel awful, mentally and physically, and am about to start another round of treatment that is going to make me feel…yup, you guessed it…awfuller. I didn’t think that was a real word, but it cleared spell check…who knew!?
So forgive me for letting my guard down, for dropping my armor and exposing myself to the realities of this disease. But there are days that just seem too much to bear, and today is one of them.
I am one of thousands, possibly millions (if you figure all the misdiagnosed cases) that go through this on a daily basis. Keep in mind I’m one of the ones who for the most part keeps a sunny disposition (as long as you don’t ask my Mom) and a positive outlook. Doesn’t matter how strong you are, this disease can get the best of you.
I still have about 14 pills to take, and then I have to jump back into the disability process with the next round of phone calls and questions to answer and have answered. I can’t even begin to fathom having to keep this up another year, let alone 2 more years, or 3 more years…or the rest of my life. But I don’t have much of a choice, do I?
So back onto that train I go…heading into the direction of the unknown, hoping it doesn’t derail along the way. Don’t feel sorry for me, that’s not what I want. Do something to educate yourself about Lyme disease. Do something to educate someone else about Lyme disease. Since my diagnosis I have had 4 friends and 1 family member get diagnosed with Lyme, with 2 more family members that have tested positive for it. That’s 7 people in my inner circle who found out because of how sick I became. Don’t let yourself be a statistic. This is real, it’s everywhere (every state, every country), and it’s being grossly ignored and mistreated by the medical system.
This is the reality of Lyme disease. Take the extra 5 minutes to check yourself when you come in for ticks. My friend says she now knows where every single mole is on each of her children’s bodies, because of what she’s seen me go through. That’s all I ask, take care of yourself and each other. There is no cure for Lyme disease, there is only treatment. The risk is too great to not take action to protect yourself. I’ll get on fine, and continue my journey as best I can alongside the thousands and thousands of others who feel like this on a daily basis. But perhaps you don’t have to, let’s keep it that way.
For more information about Lyme disease please visit Learn About Lyme.