Wednesday, October 21, 2009

How Lyme Disease is affecting me so far . . . . .

I just wanted to have a place where I can answer questions without always having to answer questions. Sometimes I want to go a day without even having to talk about what is going on. But since I'm still newly diagnosed. People are still calling every day or stopping by because they've heard the news. I am grateful! Please keep calling & coming by. But writing things down just makes it easier so I don't have to explain what I am going through. Or how Lyme affects me day by day. So here goes . .

For myself & some others, the lyme diease goes in "cycles". That's why in my updates over the past couple months, you see that I am "feeling better" & then "sick again". I thought whatever it was that was making me sick was going away, and just when I almost felt like I could get back on my bike again, BAM! I'd be in bed with the worst headache, intense neck pain, & muscle aches imaginable.

Week 1 (Hell Week)

For 7 days straight. I am literally in pain from my head to the tips of my toes. Nothing I took for pain even touched it. It makes me see things out of the corner of my eye that does not exist. I have no appetite & have to make myself eat. It makes me very irritable, depressed, & anxious. I have heart palpitations & my heart is usually either racing over 100bpm or just putting along at 58 bpm. Sometimes I am afraid if I go to sleep at night, I won't wake up. I have crazy sensations all over my body. My left hand goes numb & my muscles twitch all over. That part doesn't hurt, it's just strange. My husband doesn't know what to do with me. This week, I will call "Hell Week". Strangely, I am able to get out of bed a bit in the evening for my daily (most days) walk around the block. My headaches subside somewhat in the evening. Which is good because I don't sleep through the night as it is. During this week & the next, Amy Novak is the only one I talk to. She's the most understanding. During the other weeks, I try to give her a break ;-)

Week 2

After "Hell Week, there is a week where I just feel like I have the flu, but I am able to go downstairs and hang on the couch. I may return your calls & my Facebook updates are less negative. Symptoms are less intense.

Week 3

Then the following week (the week I am in as I write this note) I start to feel even better. And I may even put on jeans or shorts & a T-shirt instead of sweat pants or pajamas. Still, there is no blow drying my hair or applying make up. Just 30 minutes of household activity & I am exhausted. But hey, at least I shower every day.

Week 4

The last week in the cycle is my favorite week. It is the week that I feel the best. I even have a day or two where I almost feel "good" just weak & tired. I will be able to get out of the house & go to the grocery store or maybe even the mall for a bit or the movies. This is my favorite week. My husband gets to see me with make up on!! And I may even blowdry my hair.

Now this cycle is likely to change very soon. Once on antibiotics, Lyme Diease is a whole new ballgame. Not one I want to play. I will tell you more about that later. Stay tuned!
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