I purposely haven’t blogged in a while. In fact, I have avoided most contact except with my close family and friends (both mostly by phone) for the last month. I haven’t checked my email. I have barely been seen on social media in any way. I needed to pretend for a while that I was “normal” again. I was starting to lose my sanity. I needed to not have to put on my “brave” front to everyone, to not convince anyone that wasn’t in my inner circle that I was “holding it together.” And while I intended on an easy month, as carefree as I could be, it was far from that.
Last month I switched to oral dosing, which was determined by lack of money to continue with IV therapy. I was at a point where my doctor would have liked for me to stay with IV dosing for another 2-3 months but luckily, I was stable enough to make the early switch. While it was unintended this originally, it ended up to be a good thing for me. After IV dosing for so long and being so sick, oral dosing was a welcomed relief. It was so much easier on my system and didn’t wreck near the overall havoc on my body. The side effects weren’t nearly as bad and while I continued to herx, it was easier and less intense most days.
After dosing, I started having more “good” days than I’d had in a while. I had days where my pain was tolerable enough so that I could skip my pain meds. (I have an aversion to pain medications because I worry endlessly about becoming addicted. I have skipped doses I did need just because of that worry.) I even was able to do a little bit of driving, the first time in over 10 months! (Of course I was only able to drive on days when I wasn’t taking any mind altering medication and having a good enough day mentally.) My brain was doing better. I was detoxing well. I wasn’t getting rid of the amount of “crap” so I didn’t have the amount of “crap” to get out of my body. All of this was GREAT, except that it gave me a false sense of hope. It fed into my idea of being The Great Pretender. All of it made for the perfect storm of which the last two weeks have been. Please don’t get me wrong, I have still made major progress since treatment began and I’ve been able to see a lot of that in the last month.
This is what TBDs do to you. Lyme is cyclical, most often symptoms “flare” every 4-6 weeks once you are at a manageable level and even in the beginning of the disease. This is also a trait shared with many other diseases including Fibromyalgia and Chronic Fatigue Syndrome (both of which there are now documents supporting that BOTH are related to Lyme disease (undiagnosed.)) You feel better, therefore you think you are getting better and then you do too much because you want to enjoy feeling better and that exacerbates your flares and symptoms. It’s a constant game of “2 steps forward, 1 step back” (sometimes its even 1 step forward and 10 steps back.) Its a nasty little bugger. Its mean and cruel. It messes with your brain and your heart and your soul.
For these reasons alone, TBD patients, HAVE to be some of the strongest and toughest and most amazing people on Earth. I don’t say this, because I have an inflated sense of self, hear me out on this: They are NOT quitters! They know what its like to persevere and not just because they have to, but because they want to and they need to. They fight for every thing in life, things you’re “average” person takes for granted every single day. They know what its like to take victory in the smallest of battles (yes, even taking your first breath of the day!) They fight against their own bodies, even when they remain perfectly motionless. They fight to retain any sense of self and sanity. They fight the government for disability and retirements. They fight against health care systems that are ignorant to their disease, in some cases denying the existence of said disease. They fight to help others (family/friends/general public) understand what they are going through and to help those people to avoid (if in any way possible) the struggle they, themselves are going/have gone through. They are constantly fighting, even when they are on the verge of collapse. And while all of that “fighting” would make anyone else bitter and cynical and jaded, it makes TBD patients stronger, but more loving and gentile and understanding and appreciative and sensitive. Perhaps, it is that the complexity of the disease(s) on the body and mind mimic the complexity of the organism itself?
I think the sensitivity that is gained, has perplexed me the most in all of this. I was hard, bitter, cynical and jaded. I was calloused to the ways of the world. I never considered myself to childlike or naive. I had been a “grown up” for as long as I can remember. I can’t ever recall a time in my life, when I didn’t feel “under pressure” or carefree. I could never remember a time I didn’t feel alone, despite “knowing” people loved me. I could be surrounded by people and yet, I always felt alone. I had become so negative in my heart, despite fighting to be positive. I waited for the bottom to drop out because it always did. The world was against me and never for me. I was a reflection of my thoughts.
Yes, I have been through some absolutely horrendous things in my life which were completely out of my control (I will not discuss these things because it’s not something I want to publish to the world, nor do I want even those closest to me to know about.) I had never learned how to “let go.” I never learned how to say “it’s not your fault” and really feel that. I never believed that deep down I was not broken beyond repair. I never believed anything positive anyone told me. I never believed that I was beautiful on any level. And yes, it is true that many people suffer the same things because we do not live in a culture that really nurtures our souls. As I got older things only got worse.
I don’t know when I was “infected.” I know I can tell you when I removed a tick the first time. I can tell you when I got my first rash and when specific symptoms started; but due to so many contributing factors (including being bitten and never having known, the likelihood of never getting a rash at initial bite, etc.) I will never know when I was infected because I have been experiencing Lyme symptoms for well over a decade. Because I don’t know when I was infected, I don’t know how much of what went on in my brain was me or the disease manifesting itself. But none of that really matters at this point. What matters is what has happened since I’ve begun treatment.
I have become more isolated, in a way a I never have and for the first time I appreciate it and feel the uniqueness of being me. No one in my “world” has walked this path that I continue to travel down. I don’t know anyone that I commiserate and celebrate with personally. Yes, I have met other TBD patients and we’ve shared stories and I appreciate all their individual stories and appreciate knowing that I am not alone, but no one in my “circle” can understand it and in some ways I hope they never have to. I see myself as a pioneer and a crusader now. I feel its my responsibility to fight for my diseases to be accepted and understood.
I was at the emergency room last week for a possible infection in my central line. (My doctor had decided to keep it in until my next visit to help with detoxing and to make sure I was detoxing well enough. They happened to be the ones who sent me to the ER because my routine lab work indicated a possible infection in my line.) While at the ER I was told that I was a “complicated patient” and that I had the most difficult and complex medication list the nurse had ever seen. Yet, no one bothered to ask me about my diseases that they didn’t understand. No one even bothered to contact my doctor’s on-call, for clarification or advice on what to do with me. This infuriated me! How can you treat a patient you don’t understand or know what to with?! The ER discharged me that night. It turns out that my line was indeed infected and needed to be removed. I had been sick for over a week and had I not contacted my doctor the next day, my infected line would still be in place. While I understand that Lyme and other TBDs are VERY MISUNDERSTOOD, I can’t believe that “health care” providers are so unwillingly to learn about it. This is just another reminder why so many TBD patients take their own lives, unable to be helped by our current health care system. This is why I talk about my diseases. Not because I want to, but because I HAVE TO! I am going to make sure my loud mouth saves at least one life!
I see the world in such a different way now. I have said for a long time, that I believe these diseases were the best thing to happen to me. Despite continuing an uphill battle, I still believe that and I find new supporting evidence routinely. I see beauty in things that I never could. I still struggle with my personal image, but for the first time, I can honestly say that I love myself. I am still flawed and still working on things, but I am good person and I am proud of who I am. I have a heart that allows me to feel again and the brain to go with it.
I recently started speaking to someone whom I’ve had feelings for a long time ago (in truth they’ve always been there but I shut them out.) I have communicated those feelings. I broke down my walls. I accept that this makes me vulnerable and that there is risk involved. It scares me, but for the first time, I’m just going with the flow. Maybe things will work out and maybe they won’t. But I can learn from which ever outcome comes my way. I’m not putting my life on hold anymore because of being sick. That comes with me. I’ve accepted that it’s a part of me and will always be, but that doesn’t mean that it is all I am. I’m working out the kinks of putting is farther back and letting the person I am, always evolving, have her shot in the spot light for a while. I’m TRYING not to have to feel like I have to pretend anymore.
Today I woke up and I felt like I needed to cry. I let myself cry because I needed it. It’s not because of any one thing, in fact I have a lot to be happy about now. But I’m not fighting what I feel. I’ll probably end up crying more later. I still feel like I haven’t gotten it all out. I have a lot weighing on my mind. I know this will pass. I know that in a lot of ways I’m in a state of limbo and that I can’t do anything about it…at this moment.
One of my favorite books is Tuesdays With Morrie by Mitch Albom. Even in his death Morrie Schwartz has changed not only my life, but the lives of thousands. One of the things I think about often now is a part in the book when Mitch and Morrie are talking about emotions.
Morrie says “By throwing yourself into these emotions, by allowing yourself to dive in, all the way, over your head even, you experience them fully and completely. You know what pain is. You know what love is. You know what grief is. And only then can you say “All right. I have experienced that emotion. I recognize that emotion…”Wash yourself with emotion. It won’t hurt you. It will only help you. If you let the fear inside, if you put it on like a familiar shirt, then you can say to yourself, ‘All right, it’s just fear. I don’t have to let it control me. I see it for what it is.'”
I have always loved that. I’d like to think that I’ve always allowed myself to “bathe” in emotion and then as Morrie says “pick yourself up and move on with the day.” Truth is, I’ve been fighting every positive emotion and living in fear of the bad ones. Now I think I finally get what “Morrie” has been telling me all these years. That book changed my life, even before I was ready to put Morrie’s words into practice.
And that is what my diseases have done. They have broken me but only to allow a new me to be built. Rome wasn’t built in a day and neither is Jessica 2.o. I’m finding out what works for me. I’ve been given a chance to break free from the shackles of what is the “norm” and to be who I’ve always wanted to be, who I’ve pretended (at times) to be and that is my blessing. I can be more sensitive. I can embrace any and all emotion. I can feel for my fellow man/woman. I can accept that everyone has their own story. I can be a friend. I can listen and be immersed in the moment. I can really be present with people, without rushing off to the next thing. I can feel.
From time to time, I will need to retreat from the world, only now it is to regain my center-my balance. If you are present with me, you have my full attention; all other things can wait (unless it’s an emergency.) We live in world where multitasking is so important, but we forget that there was a world before technology. There was time when we lived in a culture that nurtured what it meant to be a human being. Now is not that time. I’ve always been unconventional is a lot of ways, that’s one thing I’m not changing. I’m not conforming to what is popular. I will stand by my morals and principles. I want to live gracefully, with true love in my heart-my heart gets to lead the way with brain as the right hand advisor.