Instead of only talking about my lyme treatment, I thought I'd share a bit about what its like to do things when you're this sick. This weekend some friends of ours got married. I've been looking forward to getting out and seeing people for a good month, planning things out so I wouldn't be overextended come the actual date.
Festivities started with a bachelorette party on Thursday. Plans were to go to a shooting range, have dinner and then go out to a strip club. I had already decided to skip the shooting range because it would have been too loud for me to enjoy. I planned on joining up with the group for dinner, and play it by ear for how late I'd be out. It was going to be good enough to even just go out to dinner.
That day came and I was feeling feverish and wobbly/weak. When it was time for supper, and I realized I wasn't feeling well enough to make food for my family, I had to accept that I was too sick to go out too. I was pretty irritated and disappointed, but I knew that if I had gone out, I would have been VERY miserable and the evening wouldn't have been enjoyable.
The day of the wedding came and I decided that I was going to get ready in stages, so that there would be plenty of time for me to recover between tasks. I washed my hair in the morning, and it left my limbs feeling like jello. Later, I got dressed, and then I realized that I was going to lay down before going and I wasn't going to rest in my dress! Jared was an usher, so he had to be there early, so Lizzie and I came later, but it also meant that I had to get both her and I ready by myself.
I got up from my rest early and got dressed and did my hair. I woke her up from her nap and got her in her dress and brushed her hair. We put on makeup together and then it was time to go. I had paced myself well! I was proud. THen we couldn't find Lizzie's shoes. In the process of looking for them, I left the door to the porch open, and the cat went out there. So then we had to get her back in the house too! I did not budget energy for these things! When we got to the car, I was exhausted.
I finally got a handicapped parking tag and I was SOOOOOOOOO thankful to have it! I was able to park right by the door instead of having to walk through the entire lot to get into the door of the building. It really saved me. As it was, I was moving pretty dang slow by the time we got to our seats. It was good to see friends, but it was rather embarrassing to hobble past them all with my cane at an agonizing pace. Nobody gave me funny looks or anything, but my mind came up with all kinds of not very nice things that I thought they were thinking about me. I'm still learning how to stop doing that, and its really tough.
The ceremony was beautiful and so were the brides. Afterwards, we walked down a long corridor to where the reception was held. Again, I was moving like a turtle stuck in molasses in January. I always walk at the very edge of halls and stuff when I'm moving slow so that people can pass me. Normally I feel good about it - like I'm being polite and considerate for those around me. This time it felt painful as the people I used to keep up with in my prime passed me by.
We got to the reception room and the first thing I looked for was a chair. Found one over in the corner and plopped down to catch my breath. They had a mirror ball going and every few seconds I got a flash in my eyes. It was painful. So, I dug out my sunglasses, deciding to look like a freak instead of getting a migraine. Although, it *just* occurred to me - my husband looks cool in his sunglasses, even if its indoors, so I probably looked like a glamour queen with a hangover in mine, not a freak (those damn negative voices!). Once someone came over and stood between me and the mirror ball, I took the sunglasses off.
There were a number of times when I felt left out because everyone was standing and talking, and I needed to sit. Its really hard to include someone in a conversation who's face isn't at the same level as the rest of the people! Yes, many of my friends came over and talked to me, told me how good it was to see me out and that they missed me. I was very grateful that I wasn't in fact invisible over in the corner.
I know it sounds like all I'm doing is complaining. But its more sharing the differences of my reality. And yeah, my reality isn't all fun and roses. Regardless, I had the best time that I've had in a LONG time!
The food was great, dessert was INCREDIBLE. I haven't enjoyed cheesecake that much in a LONG time (I'm on a low carb diet). I savored every bite and cataloged it for later. In that moment I was in heaven! It was so neat watching Lizzie dance like a maniac, and watch her charm nearly every person out onto the dance floor at one time or another. She had a boy chasing her around, and it was rather cute. All my friends loved her and had a lot of fun with her.
I went onto the dance floor 2 or 3 times, maybe dancing a total of a minute through the night. But I wiggled and grooved in my chair the rest of the time, wishing I could be out there with my girl and my friends. Had my body been able, I would have been dancing the whole night. I was half tempted to bring my chair onto the floor so I could dance with everyone anyway. As much as I would have felt like a sore thumb, I'm guessing people would have gotten a kick out of it.
And you know, I bet that most of my reservations of bringing my gimp out in public have to do with my own poor self-esteem rather than what people are actually thinking. This is something I should talk about more in therapy. Its part of the whole feeling ashamed of my disabilities.
Regardless of all those negative things my mind was throwing at me, I focused on all the fun and the joy and novelty of the evening. I got to see people I haven't seen in ages and I got to get out of the four walls of my house for something other than an appt. I lived each moment to the fullest that I could, reveling in all of it.
I relived some of my memories yesterday while I was lying in bed nursing my migraine. I also realized that all of my payback pain was from washing my hair! My trapezius muscles were screaming from where they attach at the base of my skull all the way down to where they end at the middle back, and out to each shoulder. While I'm relieved that there didn't seem to be a price for that much fun beyond the massive terrible headache, its really frustrating to know that something as simple as washing your hair causes that much pain and suffering. But, as I was lying there trying to get away from the pain, I had a wonderful evening of events to visit again, and it was one of the easiest times I've had dealing with a migraine.
Knowing that I'm still able to get out and enjoy myself makes such a huge difference in my prison of daily life! I trust that some day I'll be able to do it more often and with a need for less gimpage! But hell, even if I'm this much of a gimp for the rest of my life, I will learn to embrace it and be thankful that there are things that help me.
Thank you for this brave commentary.
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