The Unpredictibility of Chronic Illness

One of the hardest parts about living with a chronic illness like Lyme Disease is the unpredictability of it.  Each day when I wake up I have no idea how I am going to feel and what I will be able to do that day.  I start each day with good intentions of feeling great and a list of things I'd like to do, but things don't always go the way I'd like them to.  Today was one of those days.

Today I woke up feeling pretty good.  I was excited about the beautiful weather and I was able to get a quick start to the day.  I went out for a really nice appointment with my chiropractor and dropped off a prescription at the pharmacy.  One the way home I started feeling withdrawn and tired.  I think I yawned 5 or 6 times on the 10 minute drive home.  I thought maybe I would need to take a nap this afternoon, but by the time I had made it upstairs, gone to the bathroom and walked into the kitchen to try to make lunch I was moving at the speed of a snail.  I found myself standing in the kitchen, slightly hunched over, silently staring at the sandwich fixings my husband had set out.  I wasn't moving or talking and I found myself wondering why he was moving around in the kitchen so fast and how I was going to find the energy to make a sandwich for myself.  

Then I realized it wasn't him who was moving fast, it was me who was moving slow.  Within a matter of minutes I had gone from perky and ready to tackle my to do list to total space cadet and barely able to stand.  My husband noticed and asked how I was doing and I told him I didn't feel quite right and that I didn't think I could make a sandwich because I was going down hill fast.  

As I was saying that my leg and arm contracted and I began to have a series of big involuntary movements that I call twitching.  I guess it's sort of like a tick or a spasm.  It doesn't hurt at all and I'm so thankful for that, but when it happens it sort of feels like my brain partially shuts down.  I get slow both physically and mentally, I become very weak, my speech slows, I have a hard time standing, and I become extremely exhausted.

Lucky, my husband was right there and he knows just what to do to help me get through these random blips.  He put me on his back and gave me a piggy back ride to the bedroom where he set me up with my laptop, water, and made my sandwich for me.  He gave me a few words of encouragement and then let me rest for a while.  

About an hour later I had to get up to go to the little girls room.  I was slow and jerky in my movements, but I made it there.  I tried to go from the bathroom to the kitchen to get some water with lemon to help with detox ( I think these episodes come on most often when I'm toxic and I had just upped my dose of Bab-1 and Bb-1), but I couldn't walk that far.  I took a few steps and tried to talk to my husband, but it was too much for my brain and I had to lay down on the floor to rest.

This video is of my trying to get up off of the floor and walk by myself just a few minutes ago.  You'll see that I need to use a chair to get myself up off of the floor and that the effort of trying to take just a few steps is making things worse and finally I just get so exhausted that I fall back to the floor to rest and continue twitching. Sorry it's sideways, I can't figure out how to rotate a video.  If anyone knows I'd love to learn how.

I wanted to share it with all of you so you could see what this twitching I keep referring to looks like.  I also wanted to share it because May is Lyme Disease Awareness Month and I one of the messages I want people to hear about Lyme is that it is serious, it can effect your life in really big ways if you don't get god treatment right away.  The symptoms are different for everyone and this just happens to be one of mine.  

I'm happy that this is something that only happens occasionally, that it doesn't hurt, that I'm not having seizures or dying, that it is happening less often, with less severity and with shorter duration (it used to last for weeks or months, not just days or a week at a time).  I'm also glad that I'm learning how to deal with it to minimize it as much as possible, and that my husband is here and knows just what I need when this happens (I couldn't get through this without him), but it sure makes life unpredictable.

I'll likely spend the majority of the day resting in bed or on the couch because it gets better when I sit or lay down and worse when I try to get up and move.  I'll have to reevaluate my to do list for today and postpone most of the items until this passes.   The hardest part is that I have no idea how long this will last.  It could be just most of today or I could be like this for a week.

I've come to terms with this limitation as best as I can.  Sometimes I get really disappointed about not being able to be up and doing things, but I try not to linger in that feeling.  Mostly, I just try to avoid situations that seem to trigger it and give in to the resting when my body demands it.  Sometimes though, I wish other people were a little more understanding of how this effects my ability to do things.  It's hard for me to plan things far in advance or commit to things that would demand a lot of time and energy (like getting a job or traveling) because I never know how am I going to feel and what my body is going to let me do at any given moment.

Have any of you experienced something similar to these movements?  What caused them?  What did you do about it?  How did it effect you?  Leave me a comment and tell me your stories, I'd love to hear them.