Bloody Lymey

A Blog About Living with Lyme Disease

Still Adjusting After 5+ Years

on April 15, 2011

Why begin at the beginning?  Besides, the beginning is a bit skewed.  Even I don’t know when the beginning is.  I first saw the specialist 3 years ago.  Dr. H. thought I had been infected for 2-3 years at that point. 

For today I’ll begin with where we are today.  I’ll get to the beginning in the next one.  Today I’m off antibiotics.  I lost count of the months I spent on them after 18.  Of course it wasn’t all at once.  It was 3 weeks here, a month there, 3 months here, 6 months there ….

Right now I’m on Zoloft (an antidepressant) for the muscle fatigue and exhaustion.  I’m also on Low Dose Naltrexone to supress the autoimmune dysfunction I’ve been experiencing. 

My knees told me it was going to rain the other day.  I don’t feel like much of a hottie when I’m waddling stiffly around and crawling upstairs, but that’s okay.  I’m trying to get used to being a 39 year old with a sometimes 80-year old gait.

I started to cry yesterday. My voice rose into a childish wail when I was telling my boyfriend I didn’t get sober to be the kind of mom who passes out on the couch. (I have been sober since 1/2/03).

But I forgot. I forgot that I have help. I forgot that my child is not alone. I forgot that his needs are met – food, clothing, bathing, tucked-into-bed and kissed ….. even if I can’t chase him around outside or play boardgames ad nauseum. Besides, he has THOSE needs met by his grandparents and aunts and my boyfriend and friends. Hell, I have a whole army of people at my disposal.

I also forgot how BAD it used to be. I forgot that there was a lonnnng stretch where I wasn’t treated for this. I forgot they thought I had MS, then lupus, then Rheumatoid Arthritis, then fibromyalgia, then chronic fatigue, then depression (had to fire that doctor who got stuck on this one ), then some type of anemia that has to do with a vitamin B deficiency …. oh, they had lots of theories and none panned out. I can’t even remember them all.

I forgot that there was a time when I genuinely thought I might die. I genuinely thought I might have to go on disability. I genuinely thought someone might be one day wiping my ass and pushing my wheelchair for me.

I forgot to be grateful that I can crawl upstairs. I forgot that one day I left my cell phone upstairs when I was leaving for work and how I stood at the bottom of the stairs and sobbed because I wanted to conserve energy and going upstairs might compromise my ability to do something else later. I forgot I was afraid to cross the street because it took me so damn long. I forgot I suffered from nerve pain …. the stabbing-hot-electrical jolts made me nearly faint; if it wasn’t a stabbing and intermittent pain, I surely would have.

If my attitude is okay, then I’m okay.

My downfall is my remembering who I was before this happened: a strong, healthy, athletic lady who liked to hike in the woods. Oh, those hikes in the woods. That’s where this all began.

I also forgot to be grateful that it wasn’t my son who contracted this. He might have been 2 when I was infected that fateful day … whenever it was. I myself can’t articulate what it feels like sometimes; how the hell would he have made his symptoms known?

Yes. There’s a lot to be grateful for. And as miserable as it is sometimes, it’s always getting better. There were months and months and months where it just kept getting worse. And just when I thought the pain and the fatigue couldn’t


be worse, that I had hit the lowest bottom possible, it would always become worse.

Today there are more good days than bad. There was a stretch where I only felt something like normal twice in one summer.

I have to stay on top of this attitude of mine. It makes all the difference.

I think what another problem has been has been my clinging to and internalizing everything my specialist says. She maintains that if it’s treated aggressively enough then it can be overcome. Period. So any glimpse of normalcy flooded me with elated feelings of “this is IT.” And then there would be a setback. And I’d be devastated. There was even a 7-month period where I didn’t see her. She officially graduated me. And now I’m back.

My primary doctor told me that it’s possible I’m free of the bacteria, but that there’s permanent damage and the symptoms will have to be addressed as they present themselves. That’s had me down, too.

On the other hand? I had a whopping dose of antibiotics for Strep Throat this winter. While I was on them, my symptoms came back. My primary is puzzled by this, wondering if I still have live bacteria. When they die, they release toxins that aggravate lyme symptoms. On the other hand, she’s worried about drug-resistant bacteria, superbugs, the toll the antibiotics take on the body ….

My specialist is treating me for “Post Lyme Syndrome.” There is another buzzword that I feel even less affection for: “Chronic Lyme Disease.” Chronic. I hate that word. And no medical authority has really used it on me yet, just dangled it under my nose now and then.

I have to keep it all in the day. Another part of my problem is looking back too much, looking back and counting the months and years that that fateful walk in the woods has stolen from me. Another problem is looking forward too much, squinting ahead at a light at the end of the tunnel that may not even exist; maybe that light is an optical illusion caused by my squinting. I look ahead and wonder if this will be resolved in the next month, the next year, the next decade.

I have to keep my feet on the ground right where they are (insert date): ____________. I can’t keep living all the past days I’ve lived with this and I can’t keep living through future events that may not even come to fruition. I can’t keep worrying about events that may never happen or get too attached to a resolution that may never come (and disguise that attachment as “optimism”). An open mind is all I need.

Keeping an open mind, keeping gratitude, and keeping my wits about me. These are the things I have to remember to do.


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