It is a gross understatement to say that living with Chronic Lyme Disease is difficult. It is an uphill battle every day, even on the so-called good days, when I can muster up the energy to take a shower and get dressed. Even then I am pushing myself. I try to be positive and keep my spirits up, although sometimes all I want to do is cry. I’m not always good at holding back the tears. I’ve been living with this for the past six years now—so hard to believe, but true. I can’t work, drive a car or have children. I can’t even write the way I used to, and I earned my degree in English. The words just won’t come to me as easily as they used to, courtesy of the cognitive dysfunction. I have trouble finding words when I speak, and often times forget what was in my head five seconds ago. My heart feels like it is a thousand mile per hour freight train, even with the slightest exertion. Of course I worry about having a heart attack, even though I am only thirty years old, and it doesn’t help when I research “Chronic Lyme” on Google, only to read of a few people dying from it. I usually have headaches, muscle pain, sleep disturbances, nausea, dizziness, weakness and bone-crushing fatigue, along with the electric jolts that sometimes occur in my body. I often times wonder why this happened…could any one person be so unlucky as to be in the wrong place at the wrong time and pay for it for years? So I walked barefoot in the grass one day, as I had always done as a child, and just that one time caused me to step on a tick and be disabled for six years? Possibly more? It just doesn’t seem right. I grieve for the time I’ve lost and can’t get back, and for the future which seems so uncertain. All I want right now is for the Lyme doctors/scientists/researchers to come up with a cure for Chronic Lyme, so I can go back to my life and live it the way it was meant to be lived. There is so much research, time and money put into Cancer, and I don’t begrudge the cause or people who are ill with this particular illness, but Lyme is so much more prevalent and can cause years of suffering as well. Shouldn’t Lyme rate higher on the list of causes people support? I pass for a healthy person when I am able to leave the house, and most cannot tell by looking at me that I am sick. The one question I hate from people is: “what do you do?” I know that is a common question people ask others when meeting for the first time, but it makes me cringe. I feel like an idiot when I say: “Oh, I am disabled due to Chronic Lyme.” Of course the conversation takes a nose dive from there. That, or people want to know more about it, and the whole conversation is dominated by Lyme, nothing else. It’s a mixed bag. I should just say that I am a homemaker, because yes, I am married, and yes, I stay at home. No one needs to know why. For all they know, I could be working from home too. I don’t know why I care what others think, but I do to a certain extent. My family and husband have been wonderful and supportive, and I think that helps a lot. I don’t know what I would do without them. They help me get through the bad days and help me enjoy the good ones. A lot of people (healthy and sick alike) don’t have that. I am grateful for the things I do have in my life, but of course my life would be complete if I was healthy enough to participate more in it. My days usually consist of waking up at 12 (waking up before then makes me feel nauseous and dizzy), eating brunch, watching tv, going on the computer, and eating dinner and going to bed. Exciting, huh? I can’t be much company for my husband, although he says I am fine and not to worry about it. Although I am 30, I feel like I am trapped at age 24, as that is when I became sick and my life as I knew it came to a grinding crawl. Wow, I had no idea I would write so much tonight, but it did help, I guess. Soooo, I guess it is official then. This is my first post. I’ve tried doing this before, but always neglect it weeks later and just forget about it altogether. I am really going to try this time, or at least that is what I say now. Good night for now.
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