I find I don't want to write and don't even know what to write about anymore. I discover that I no longer have hope. I no longer expect a doctor to tell me he has "the answer," because after 2 1/2 years of this I FINALLY get that no one is going to say that. I have accepted that this is just going to keep going on, that getting well is not going to happen over night and that it is going to take time. I have accepted that this is my life right now, and every choice I make has to be about healing.
I have been on Mepron/Zithromax and hydrocortisone for a month now. I do not feel better. In fact, I have had two very bad episodes in which my neck/shoulder/head hurts so bad I can barely get out of bed. With this headache comes severe nausea and muscle inflammation. On one I occasion I had a fever and was vomiting. I am also now sweating profusely while I sleep. If the theory goes that the antibiotics can give you a herx, I could be experiencing something like that. Babesia is a malarial like illness, so sweating, fever, nightmares are par for the course. I never understood what "night terrors" were until this illness took hold of me. I have dreams of demons and visions so terrifying that I still can't forget them. I remind myself that this is not my brain, it is the illness in my brain causing this. Although the nightmares have stopped in the last few days. And my heart, once again, has stopped racing. That happened when I was on doxycycline, and it always feels so good when it calms down.
I continue to do vitamin drips and they help. I definitely have more energy the day after I've had one. Because of these, I get through Christmas Eve and Christmas Day with no pain. A small victory! Although, come New Year's, I find myself curled up in bed, fighting an episode. This one lasts 5 days. It hurts to the core of my being and it is even difficult to get a hot bath, which usually helps the muscle inflammation. I see Dr. X right after this and I feel so defeated. It is during this appointment that I finally get real with myself, and realize that he is not a magician and can't wave his wand and "fix me." I think up to this point I was unrealistically wishing that would still happen, someone would have an answer that would have me better in two weeks time. Although it is hard to face, I am glad for this epiphany. Now I will gather all of my internal resources, dig deep, and fight yet again. Mental toughness doesn't necessarily mean courage, to me it is getting knocked down over and over and over and getting back up anyway. My boyfriend and I watch "Rocky Balboa" on New Year's Eve, (before I get sick), and there is a speech in the film Rocky gives to his son. It resonates for me. "Let me tell you something you already know. The world ain't all sunshine and rainbows. It is a very mean and nasty place and it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't how hard you hit; it's about how hard you can get hit, and keep moving forward. How much you can take, and keep moving forward. That's how winning is done."
It's a new year. I hope 2011 is my come back year. That's what my sister keeps telling me. I am adding more medicine/supplements to the mix I am already on, and I am trying to practice patience with myself and the healing process. What I want in this new year is; to help more people who are just discovering they have this illness, to be more actively involved in the politics of the disease and to help raise awareness to the best of my ability, to educate everyone around me about the pitfalls of this illness. I want to be less hard on myself, to let go of the anger I feel about being sick for so long, to accept that even if I am sick like this for 3 years that is just a blink in the big picture of my life. For now, I am not making any long term plans. I am just sitting with this illness, not in pain today, grateful for this small moment.
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