Tonight Joe and I had a table sharing Lyme info at Gage park, during the Inspirational Music in the Park program. It was a great evening!
After all the rain of today, it turned out to be a perfect, green, balmy summer night. The squirrels were running and being amusing, people wandered around, children danced to the music and we could sing along with some familiar tunes.
We had the petition there, and collected 20 signatures from people who were interested and concerned, realizing that anyone is vulnerable to the devastation of Lyme Disease and need to know what to look out for. We shared hints and flyers about how to protect ourselves and loved ones. We are so grateful to Phyllis for inviting us to set up our table, and to Lesley for graciously granting us permission!
Inspirational Music in the Park is the brainchild of Lesley Morgan, and is in its 12th year. More info on http://www.inspirationalmusic.org
Every Tuesday during the summer, join various groups and people for a relaxing couple of hours in the park.
Now, the question of the missing pants ....
Well, the truth is that I misplaced my pants this morning. Really. No, I wasn't in them at the time. But I've noticed (or was told) the last week or so that the old brain wasn't up to speed. The Lyme bugs must be having a grand old time up there again or something. I've been struggling with this for months now, but it seemed to have been slightly better for a while.
The last three weeks, more and more chunks of time went missing in my mind. I could not recall what happened even an hour ago, and couldn't retrace steps to find things I had in my hands or usually handle with a strict form of routine. After we got rained on on Saturday, the deep body chill took hours to go away, and I was missing a chunk of time until after I'd started to warm up again in bed with soup, hot chocolate and an electric blanket. My keys are still missing from then - hopefully they will be found! But it did mean I vacuumed the bedroom properly in the search for them, so not all lost.
Oh yes, the pants. Last night I was doing some laundry, and planned what to wear for today. Clean laundry was put away. When I wanted to get dressed this morning, the specific pair of pants were nowhere to be found. Told long-suffering hubby who had no ideas to offer. I looked everywhere. Of course we had lots of jokes to share about the Case of the Missing Pants!
Yes we found them eventually, hanging innocently over the banister, nicely folded. How on earth did they get there instead of in the closet? No idea. I was sure I put them away. No recollection of folding them on the banister instead.
You might say we all do things like this. Sure, we do. Misplace keys, a sweater or handbag or a pair of glasses. But it keeps happening more and more, unable to retrace steps and sometimes completely unaware that I've put something where they're not supposed to be until someone tells me.
It is mind-boggling, and more than a little scary - because the more I try to be methodical and in control, the more tiny parts of my mind are slipping through my grasp like little slippery fish.
However, to be graphic about the Lyme stuff, I've not been too well before the wedding and it got worse. Nothing to do with stress, but I was feeling more and more sick, couldn't face food, and would not be able to keep down what I managed to eat. That meant I was also not getting all the meds, since some would be eliminated along with food. Weird rashes would spread all over my body, getting worse with every episode. Turning interesting colours added to the adventures!
The Sunday before our son's wedding was the worst episode yet and I was violently sick. On the Monday I contacted the Lyme doctor in the States, who wrote back to drop all meds until after the wedding and then to start slowly back again.
So, that means for about 3 weeks now I have been off meds, and Arno thought more of the Lyme symptoms were coming back. Especially the malaria-type symptoms are making me crazy with chills, sweats, fatigue, muscle ache and trouble to get to sleep despite using a low dose of Melatonin.The most worrying one is the recurring issue with bigger chunks of missing time. Arno has already taken over sorting out my meds every ten days. His help, patience and support mean more than I could ever say.
Interesting journey! Every day brings something different. But in putting up a booth at these community events, and talking to more and more people who always thank us for sharing the information, handing out pamphlets and being concerned for their welfare, make it all worth while. If even one person listens at each of these events, it means one family who might be able to protect themselves or ask for help if they should need it.
Recommended reading: "Still Alice", by Lisa Genova (or see Goodreads info)
No comments:
Post a Comment