What is wrong with me? That’s a question I get from just about everyone and one that I ask myself maybe too often. I know my diseases. I know them well. After all, we’ve spent half of my life together (even before I knew their official names.) I’ve spent almost as much time getting to know them as I have getting to know myself (before, during and after all the “renovations and upgrades.”) But lately, I find myself asking myself that question more than I should, more than I used to.
I am always seeking ways to become a better human being, of getting better, of living a better life, of improving myself, of being a better member of a society that I once withdrew from. I have utilized every resource I know how to, every one I can find. I believe there is no “one size fits all” when it comes to self-improvement on any front. The only one who can decide what works for you is you. NO ONE ELSE CAN MAKE THESE DECISIONS FOR YOU! Even when it comes to one’s own health, doctors can give you advice/medicine/treatment plans but ultimately you are at the helm driving you own journey, through action or inaction. You can choose to comply, to follow, to lead or even to do nothing. I have learned to take full accountability for all my actions – past, present and future. The past at times rears its ugly head and I am forced to face that, despite learning to “compartmentalized” every once in a while one of those compartments is triggered open and I must adapt to handling it over again. It rarely ever works putting them back they same way twice. Perhaps because I continue to change and therefore my tactics for dealing, coping and healing must also evolve and change as well.
Many people still know me as someone I despise now (because they haven’t seen me), someone who was so sick but not knowing why, someone who I no longer am. Truthfully, it hurts to know that who I was I cannot change. I can and have, changed who I am now. That’s all one can ever really do. (Make amends where you can and should.) I know that the way others feels about me is their problem and not mine. I live as authentic and true to myself and my creator and to my values as I can. I am far from perfect! What troubles my soul is how to move on from what once controlled me and how to take back the control that I had lost. Its been a very, very slow process but I’m working on it. Those who still know me from the past would probably find it impossible that I would ever change. In a way, I can’t blame them for not wanting to see the change. That doesn’t make it any less painful.
My goal lately is happiness and joy. Happiness is an emotion and therefore subject to change (let’s be honest NO ONE is happy every single moment of their life!) But joy is sustainable with work. Joy keeps us going when happiness is overrun by other emotions, especially the negative ones. Joy needs to come from within, again “one size fits all” doesn’t work in this situation either. We are all unique individuals with individuals needs/wants/desires.
Every day is a struggle. I am no exception in this way. Every day I wake, not knowing what my disease will bless or curse me with. Will it change in an hour? A week? A month? A year? I am chronically ill, that is not going to change until a cure is found, which with the way my diseases are viewed politically, is not going to come any time in the very near future. So I must adapt. But I must not lose my inner voice.
The question of “what is wrong with me?” keeps coming into play over and over again for several reasons.
I am on a lighter dosing cycle (last month, this month and next month) than I have been on since I started treatment. I am feeling so much better over all, though with the weather in the area I am in fluctuating as much as it has over the last month or so (constant swings of highs and low due to weather fronts with or without precipitation) make it hard for me to adjust and to stabilize. Despite the weather, I have pushed myself too hard, especially during my dosing periods. This I can promise is coming to an end. With me feeling overall better, I got a false sense of “being well.” Yes, I pushed damning the consequences because while I could I “needed” to feel “normal.” What really is normal? For me it meant putting my illnesses on the back burner. NOT my best idea. And I’m paying the price for it. I was forgetting my pills (its still a lot even with the lighter dosing.) So I asked “what is wrong with you?” “Do you want to be sick?” “Do you not want to stay feeling better?” Who am I pushing myself for? Because if I am not well than I cannot be well enough to push myself even a little. “What is wrong with me?!”
With all the overdoing and pushing and filling my days when I should be resting or taking it easy, I ask myself again “What is wrong with me?”
Food is my one saving grace. Purium continues to make me feel better, have more energy, recover faster than I would without it. I’ve cheated on my no Gluten or “clean eating” a few more times than I probably should have, but despite that, my stomach is still doing amazing! This is one thing I don’t question myself on. It was the best “chance” that I have ever taken for my health. It proves to me that “food matters” and that I need to “eat well to be well.” I’m back to cooking and clean eating.
But food alone cannot completely rid me of the brain issues that are going on (I will say that it does help though.) My anxiety is building the closer I get to November 18th, when I’ll talk with my doctor and get my new dosing plan that will start in December. I’m anxious about being horribly sick agin, worried that even with the best laid plans and all this “healing” time that I will be back to herxing and being confined to bed. I know that some of this is unavoidable because of treatment. The whole point to treatment is to kill the organisms that hijacked by body for so long. It is only natural that when something dies, there is decay. Imagine this in your body. Where do the dead things go? What about what comes from the decay? You end up feeling the dying in a way that no one can imagine until they experience it (if you don’t believe me, ask a cancer patient or survivor what chemotherapy is/was like.)
Instead of enjoying the “free” and “healing” time I have left, my anxiety kicks up and reminds me that every day is one less day of healing. This is a total shift of what my normal mentality is…”enjoy each day; make it count; celebrate what you have.” I’m not depressed, just anxious. This is probably in part because I know what the worst can be (treatment has literally almost killed me over half a dozen times, including ones almost at my own hands.) Sometimes the known is scarier than the unknown. With the known, you know what’s coming, how bad it can be, how you’re going to feel, the control you will lose, even at times the inability to move. So why am I focusing on this?! What is wrong with me?!
My only answer that I can come up with is that my diseases are flaring. I know this because I know my diseases and because I can see them trying their hardest to win control of my body again,because I have new rashes. I may not be able to control the thoughts that come into my mind nor my emotions but I can control what I do about them. And so, as always, I fight…as I always have and always will.
Sometimes that fight involves distraction (anything I enjoy that will take my mind off of things.) Sometimes it involves rewarding myself for all I’ve been through and all that I know I still have to go through but will handle with the utmost kindness I can bestow upon myself. I am my harshest critic. I could spend days, months, years (and at times I have) dwelling on the past or every flaw I have (from looks to personality) but I am trying not only to be a better person to others but to myself as well. But I am trying to refocus where I am and go back to the tools that I know that work. Prayer, meditation, relaxing, being in nature, re-grounding myself, nurturing relationships. I think I needed all the “what is wrong with me?” to re-center and to come back to place that I strayed too far from for a while. I got cocky about how much I could handle and now I’ve been humbled again. So its time to put my energy (my spoons) back to where they are needed and that is on self healing and preservation. After all, I’m no good to anyone else when I don’t take care of myself and I know too many people are counting on me.