Sunday, June 19, 2011

Making Progress; Losing progress

Not long ago, my Lyme disease left me laid up most of my days. I had bursts of energy here and there, but that would usually come screeching to a halt, leaving me stuck like a beached whale without enough energy to move--what I refer to as a "Lyme crash." The result was that I would often have to have help getting upstairs to my bed.

Being too weak to walk even a very short distance is something that is hard to understand unless you've felt it (and I hope that you never do!). On my worst days, I had periods of time when I was too exhausted to even speak. On my worst days, I couldn't leave my bed other than trips to the bathroom. If the house caught on fire, I would have had great difficulty getting outside!

Over the last few months, I've only had a handful of Lyme crashes. I haven't had to be carried or piggy-backed in months. I haven't had to crawl up the steps or scoot down the steps. Thursday, even though it was a medicine day, I was able to go grocery shopping by myself--and for our family of four, that is no small feat! It really wasn't that long ago when even walking around the block was like running a marathon to my frail body, so managing a trip to the grocery store solo feels nothing short of a miracle!

While I have made incredible progress over the past ten and a half months of treatment for my Lyme disease and multiple co-infections, this weekend has been very tough. Yesterday, I had a new symptom, and, quite frankly, it was one of the worst. My calves started burning and it got progressively worse over the course of a few hours until it felt like my legs were literally on fire. I took a cool bath, which helped, but then I had another episode about a half hour later. On a scale of one to ten, the pain was an eight. The second episode didn't last as long as the first, and as of today, I haven't had any more.

When you're healthy, it's hard to imagine being sick. On the flip side, when you're chronically ill, it's hard to imagine being well again. Well, I've had my taste of feeling well again, and let me tell you it spoiled me! It didn't take long for a false sense of security to settle in. A little voice inside of me was whispering, "You're better now! You're through the worst of this wretched disease!"

Recently, my husband and I began tossing about the idea of pursuing my dream of purchasing another horse. I've been doing really well for a few months and I finally felt like I was in a place where I could care for another horse. Losing my beloved horse and being too sick to own another horse has been incredibly difficult for me.

When my legs were burning yesterday, all I could do was cry--equally for my shattered horse dream and for the sheer pain that I was feeling! I had no idea if that was to be my new normal. Would I have to deal with that agonizing pain all the time? Frequently? Occasionally? You don't get answers to questions like that if you have Lyme disease.

Honestly, I'm feeling pretty discouraged today. Though I haven't had any more episodes, I just don't know what to think! I feel like a rug was pulled out from under me--that old false sense of security that I was talking about. It's heartbreaking to have to give up on your dreams over and over again. I know that once I've had a chance to process things, I'll feel better. I'm planning a trip out to the barn this evening so I can hug a horse--the best cure for an aching heart.


  1. Alyson, I know what you mean by the discouraging moments. These are the hardest to deal with. I related to everything you said up to the burning calves. I have no idea what that one is, but am hoping was some sort of a bizzare Herx?!! Taking a cool bath was a great idea. We cannot lose hope, but you're right, I feel like we can never again take our normal bodily functions (like walking, climbing stairs, etc) for granted :)

  2. I get that burning pain down to my bones and it generally starts in my ankles and travels up my whole body! Not fun! It usually happens right after Flagyl days for me. Doctor just gave me some pain stuff that actually helped! I was surprised. Email me if you want the name.

  3. Thinking of you, Alyson. The ups and downs are the hardest....a little like getting the wind knocked out your sails over and over again. I get stinging pains and achy pains...kind of like the ones I get from IVs. Heat packs help with these, but unfortunately would do nothing if you are feeling like you are on fire. Fingers crossed, it's just a phase and will pass. For a while, I was going through a sunburn phase (felt burnt even though I wasn't). It didn't last long...knock on wood. When I had it, bathing with colloidal oatmeal was helpful. Maybe this is an option??? Hang in there. XOXOX

  4. Ugh - nothing like the ups & downs of Lyme. I hate those Lyme crashes, but that burning is one of the worst! Here's to continuing to feel better while keeping in mind limitations so you don't overdo it. Take care

  5. I'm so sorry Alyson. I had no idea you were going through this. I have been so wrapped up in starting my own treatment (and life), that I haven't been checking in on blogger. I will stay more on top of it. Hang in there, my friend. You were feeling great and you will again. We will beat this thing and you will get your dream horse!