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Story 27


How has Lyme Disease affected your life? What inspires you?

Lyme Disease feels like living with a Magic 8 Ball.  You really never know what you are going to wake up with in the morning. Sometimes you get lucky and it tells you to try again tomorrow and you have a really great day.

Sometimes you get the iffy answer that you are just going to have to get dressed and find out what will happen, and other days you know as soon as you open your eyes that the answer is that you are screwed.

I really try not to focus on it too much. There are times, seasons actually, that the issues aren’t that bad. I’ll get an odd inflammation spot and it’ll hurt, but really pain is part of the day-to-day. So you learn how to stop using that arm for a day, walk without putting much pressure on that leg, or just deal with it and wait it out. I don’t do well with medications of any kind, even homeopathic. Sometimes just heat or a bath helps get through a day when it is particularly painful.

There are so many people living with Lyme disease searching like I have for answers and hope. There are some ways to help symptoms, but still there are few rays of hope. I give to the Lyme researchers, hoping that one of them will come up with something useful.

To be honest, Lyme is a nightmare. I rarely admit that. But it is so frightening that sometimes in the midst of the harder times, you just worry that you are going to live in misery for the rest of your life, and you wonder how long that will be. You look at your children, afraid they might have it, then feel like a terrible mother because you know that your health is letting them down. Sometimes I am so angry with how I feel that my husband thinks I don’t care about him the same way, it’s not him.. it’s the Lyme. Depression is a hard symptom to fight, it feeds on your fear. “What if my heart is the next thing to stop working right?” It makes you so exhausted that you lack motivation to do better. “I don’t want to get on the treadmill, it hurts me and I am so tired I would rather just curl up on the couch.” Your lack of movement isn’t helping your self-esteem or your body, it just makes it heavier and weaker.

People ask me from time to time to talk to a friend or family member about living with Lyme. I always freeze up. I hear myself saying that I will, but deep down I am shaking at the idea that someone else out there is going through the crap I am going through and if I have to stand there and pinpoint what Lyme really feels like and tell them that they are not going to see the end of it any time soon, I might cry.

I wish I had better answers. I try to give hope when I do talk to other people about the disease that is taking down people every day. Men, women, and children are getting infected with a serious disease and until recently nobody was aware. Treated early and hard in the beginning, Lyme disease is treatable and your odds of a complete recovery are really good. But left undiagnosed like so many of us were, it becomes a world of pain and curious symptoms that I often find overwhelming.

Searching for answers sometimes helps. I’ve found some wonderful websites and I share them with those who are looking. And sometimes just learning how to forget about it for a while and focus on the good places in your life is the best treatment you’ll get. It’s just how the ball rolls.

Good luck!

I am a firefly!!! When my days are dark, I look out and see there are others like me doing this dance to their own song and lighting up the night. That is why my blog is called FireflyDance. Read more of this warrior’s story here.

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