Dear Lyme disease,
I have tried, unsuccessfully, for the past 9 months to “oblige” you. I’ve adjusted to the crap you’ve done to my body. I can’t dance all night now. I couldn’t dance all night before Lyme disease, but I could at least jerk and shake my body on the dance floor under the illusion that I could dance. I now realize I can no longer go 24 hours without crying, or being filled with uncontrollable fits of rage over things like a commercial on TV. I’ve accepted having Lyme disease is like giving someone else the remote control to your emotions, and I’ve adapted.
I’ve gotten used to taking between 20 and 50 pills and supplements a day. I’ve gotten over the feeling of wanting to puke every time I see the tube going in the hole in my arm. I’ve adjusted to having to do a daily IV of powerful antibiotics into my heart, the whole time trying not to gag at the thought of what was happening in my body.
I’ve gotten used to not getting up for work every day. Granted, this sounds like a good thing…and it would be, if I could enjoy the day instead of being in constant pain. I’ve adjusted to feeling like my brain is turning to mush as I no longer use it for the analysis of budgets (a fancy way of describing my career, it’s really just knowing how to use Excel and schmooze cranky people who are in charge).
I’ve adjusted to the dietary guidelines. (I don’t necessarily follow them, but I’ve adjusted to them.) I understand that eating wheat gives me sinus problems. I understand sugar and Lyme don’t go together. I’ve given up caffeine on a daily basis. I’ve gotten used to people making fun of me for taking fish oil in my 30′s.
I’ve gotten so used to the pain that it is now a part of my daily life. I’ve gotten used to people not “getting” it. Not being able to understand how bad I feel on the inside when I look okay on the outside. I’ve accepted the people I’ve lost along the way on this journey…either because I’m always too sick to do things with them, or because they were just a negative energy drawing what little strength I had left to fight for my life.
I’ve accepted the fact I will never be whole again. I understand that the best I can really hope for is 80% of what I used to be. I’ve gotten over the grief, and moved on with the knowledge that my life will be different when I get better.
I’ve accepted the fact that all of my bank accounts are empty. That insurance, which is there to protect me, is actually keeping me from getting better. That in order to continue without insurance I have to give up the life I knew. I’ve accepted the almost $20,000 in out of pocket expenses in the past 4 months…giving up vacations, new clothes, outings with friends in order to keep fighting for some form of life again. I accept the fact that in 2 weeks when insurance drops the IV that it will cost $150 a day out of pocket, and what that is going to do to my family financially.
I’ve accepted I might not be back to work before it’s too late for me to be able to go back to work. I’ve accepted that from this point on nothing in my life will ever be the same. The life I planned on will never come to be.
I can accept all that and everything else that comes along with the Lyme disease that has plagued my body for so long. I can accept the limitations placed on me by this disease. I can accept the fact that maybe I will never get any better than I am today.
But I can’t accept the feeling of dying inside because everything on the outside appears that way. Would it be too much to ask for just one day of relief from all the bullshit that this disease does to your body? I don’t think so. And I don’t think it’s inappropriate for me to want to break things because I can’t get a day of relief.
I wish you were tangible Lyme disease so I could slap you silly, pull your hair and knee you in the groin.