Oh Them Wobbles

"The fires are high". That is the phrase I turn to when I can't figure out why my symptoms (ie. numbness, swallowing, wobbles) return after being dormant, and I officially can't call it a relapse. The phrase came from the first neurologist who treated me, and I refer back to his wise (and helpful) words when I struggle with things MS related...except the other day.

When my wobbles perked up last week, without any provocation from my daily actions, I told myself that "the fires are high". I was okay with that: I would take some pills and stay out of the kitchen. But when they showed up yesterday while playing a board game with Jason (sitting still), suffice it to say that those words gave me little comfort. Had I put a little extra concentration in to the game? It sounds crazy, I know, but getting wobbles from thinking is not new for me, but it is new lately.

I don't enjoy math or science, but I do like to have concrete answers...so I ask....WHY?!

now and then

Now: when I tilt my head back to drain a can of pop...I can do it.

Then: I couldn't finish a can because if I tipped my head back, I got the wobbles.

This is just something on my mind these days.

Emily

a peek into my tidy house

I realized last week that I am avoiding doing any large "projects" in my house because I don't want to make a mess. Projects may include cleaning out a drawer or a closet, starting a craft project or anything else that requires taking things out, and amassing piles.

I just finished designing and assembling a beaded necklace, and I put every last bead container away. I don't do much beading these days because I don't have the concentration required (or the concentration I think that I require) to imagine the finished piece. But when I do, it is pretty much a start to finish job.

I thought that I was avoiding "messes" because I was afraid I wouldn't have the energy to clean it up, or finish the project in one sitting. I have always disliked clutter, as well as having anything out of place in the main part of the house.

In order to stay on top of "clutter", I putter around putting things away. One sure sign of me having an off day, is the lack of puttering that I exhibit. "Puttering" requires walking around, the number one thing that I can't do if I'm wobbly. There isn't order or a systematic nature to my puttering...hence, puttering.

Today, a relatively good day (except for a slightly annoying headache) I put a different spin on the reason behind my lack of projects. Keeping the house tidy is something that I can control...for the most part. Some days, it is out of my control. So if I avoid creating situations that at some point require tidying, I am always in control.

If I continue to spend every day in my safe and tidy bubble...I will go crazy. I'll be in control, but I will be certifiable.

Feeling a bit obsessive,

Emily

bad music

I don't do well with "doing nothing". No matter what my body and my brain tell me, this little inner voice is always pushing me to do something!

Yesterday, the same inner voice pushed me to get out of bed. Even though my body and my brain said, "stay in bed, we need it", the "other" voice said, "Alarm went, going to Costco this morning...time to get up".

Who am I kidding, it isn't simply the "other" voice, it's the "evil" voice! It doesn't yell, it doesn't whisper. It doesn't call me names and it doesn't compliment me either. But it tugs at my responsibility strings. And the responsibility strings are connected to the guilt strings. These aren't strings that make beautiful music!

My point is, I should have listened to my brain...and not the voice. The wobbles came on fierce in Costco. I could no longer turn my head to look around, or watch for carts coming my direction. I use my own cart to protect my "personal space". It seems when people get too close, things get worse for me. If I think about it now, I may even start to panic. I'll have to think about this aspect some more. I definitely get quiet and tense.

So today, I am wiped. And I was wiped for the remainder of yesterday. Come to think of it, I was wiped on Thursday afternoon too! And the evil little voice just keeps playing bad music!


Emily

subtle reminder

No denying it...trying to celebrate it...I have been very active lately. Other than some headaches, and low-level fatigue, I have felt good. Almost...n-o-r-m-a-l. normal.

A few posts back, when I discussed my CPP Disability application, I mentioned that certain things have just become second nature to me (like guiding my leg into my pants, or holding on to the bathroom wall). So if I were to expand my thinking on this idea, I guess that I have made a number of other adjustments in my life, in order to get through the day...one day at a time. I'm not going to try and figure out what they are, but I imagine they involve body positioning, head movements and task selection.

So today, when my "wobbles" were activated while I was sitting by myself at the kitchen table, I was taken aback! I spent a very short amount of time sorting out papers from the junk drawer (remember, one of 3 junk drawers). I decided to use page protectors to organize and separate pizza flyers, coupons, restaurant menus...so I was dividing a big pile into multiple little piles. This involves a shifting of the eyes, a subtle turning of my head, moving my hand one direction while looking the opposite direction ... as Jason says...it was just enough to remind me that I am disabled.

In my mind, it reminded me that I am where I need to be. When I start to think, "well maybe I can get some kind of job...", I will remember that I can't sort papers.

Emily

P.S. As I'm typing this, I now remember walking the aisle of the video store the other day...I suddenly needed Jason by my side. I had been walking forward, with my head turned to the left...I KNOW BETTER THAN THAT! It was obviously a moment when I let my subconscious guard down!