Saturday, September 24, 2011

But, you don't LOOK sick!

Ask anyone with Lyme Disease and they will tell you...it is hard for people to understand what we are going through, because...well, we don't look sick. At least not usually. Honestly, it doesn't bother me. I mean, if I'm going to feel like crap, I'd rather not look like it too. But, it does make it difficult, because on a day when I am in pain, fighting a sinus headache, having a major anxiety attack, experiencing shortness of breath, have intestinal cramps, feel like I'm walking through mud, can't focus on any one thing for more than 30 seconds due to brain fog and feel like I need a cane just to hold me up...people think I'm fine. It's totally understandable! I don't look sick.

Also, I do what I can to mask symptoms, which doesn't help people understand what I'm going through either. On a day when I am having difficulty moving, I may support myself with a hand on the wall as I walk. If I am teaching a class or having a conversation, sometimes I lose a word or stutter or say knee when I mean elbow. During these instances, I make a joke, and we laugh it off. If I'm tired (and it shows), a little Eye Creme goes a long way. Sometimes, though, symptoms are hard to hide. Like when I am in the middle of a conversation and I forget what I was talking about...mid-sentence. Or when I can't remember a person's name that I definitely should remember. Or when I can't breathe simply because I walked from one room to the other or bent down to pick something up. But, it's all good. At least I don't look sick!

Now, I'm out and about a lot. Between teaching yoga classes, taking my son to school, doctor's appointments, visiting friends and family, I interact with a lot of people each day. Often, someone will ask: "how are you?" To me this question presents a dilemma. I don't want to lie, but I also don't want to unload on anyone with the multitude of bad things that are happening in my body at that particular moment. Do they really want to know? Are they asking to be polite? Either way, what I'm going through is no fun, so hearing about it can't be much fun either. However, I could talk about Lyme for hours. HOURS. So, listener beware! Asking a simple question like "how are you?" can unleash an hour-long depressing rant about the politics of this controversial disease, how I can't eat anything I want to eat and my fears about my children's future as they fight this disease. That's what's weighing on my heart right now, so I can't help myself! Hmmmm. Maybe we should think of a safe word. You know, so in case I ramble on and on and you just want me to shut up. Or how about you just make up some excuse to get away...as quickly as possible...like your house is on fire, or you just saw the bat signal.

I've had Lyme for a long, long time, so my 'normal' is anything but. To me, though, it's life. If I felt even half as bad as I do each day, I would think I was cured (forget the fact that there is no cure for Chronic Lyme!) Any relief from symptoms would be a tremendous gift. Ultimately, though, what we're working towards is the day when I don't look sick because...I'm not!

7 comments:

  1. Very well said! I would like to share this on my blog if it is ok with you

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  2. Love you, friend. I think people would be very surprised to know all you are going through. You hide it TOO well. Looking forward to the day when we are both feeling and looking great. XOXOOXOOXO

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  3. Thank you both! Julie, I would be honored. Thanks for asking! Kathy, I guess it has become easy to cover up since I've been going through it for so long. Looking forward to that day too...soooo much! XO

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  4. Very well said. One of the most frustrating things about this disease. Hang in there. You are very strong!

    Marianna

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  5. I am interested how you have infected your family. I have had lyme's for a long time and haven't spent much time on the computer looking at others experiences (too little time, too much to handle), but I came across your page and when I saw the statement that you had infected your family I felt I had to ask you. I imagine that is a huge concern to you. It would be for me as well.

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    1. Hi Anonymous. :) Well, both of my children have symptoms and tested through muscle testing as having Lyme and co-infections. They were infected in the womb and through breastfeeding. My husband also has Lyme and we believe he has had it since birth. That said, many Lyme-Literate M.D.'s believe it is transmitted sexually. So, there is a chance we've passed it back and forth that way over the years. It is a lot to take in, but I must say, speaking to others who are also suffering has been the greatest gift to me. There are some great support groups on Facebook and Yahoo you can join. I'm happy to give you info on those if you are interested. Best of luck in your journey with Lyme. It is an ongoing struggle, but one that we can win through perserverance, commitment and fighting for the treatment we deserve!

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