Tuesday, May 27, 2014

MS update

Time for a MS update again!

Sometimes I get through a day and I'm so exhausted that the second I sit down, I fall asleep. I get angry about it. Really angry. Why can't I enjoy my evenings hanging out instead of passing out? Why can't I get through a normal day? Why can't I do more?

Then I remember the old days where I couldn't get out of bed because my leg didn't move. Or when I had to take a nap after washing my hair because my arm was so weak. Or had to spend the whole day with one eye closed because of my double vision.

At this moment in time my MS is managed to the point that I often forget my limitations. We used to be strict about only doing one activity a day. Then I could manage 2 activities on most days. Let me remind you that an activity could be as simple as taking a shower and getting dressed or as mundane as going to the grocery store. We're not talking about super fun hiking/outing/swimming/partying activities.

But as I reflect on my days now...

I can shower, drive Zoe to and from school, see a patient, take care of an infant, feed myself, go for a walk, and help with dinner. That's a lot more than one or two activities in a day. In fact, it looks almost "normal".

Except when I try to read more than 5 minutes, I fall asleep immediately or get double vision until I fall asleep.

Except when I get the stomach bug going around, and my muscles start twitching in spasms as my fever creeps up.

Except I still cannot fold a load of laundry or put away the dishes without needing to lie down afterward.

Except I can't hand write more than 5 thank-you notes before having to turn the whole task over to Yannos.

I'm mostly ignoring my current neuro symptoms. Probably not the best approach, but there is something strangely comforting about intervention not being a necessity. I've had weird patches of sensation loss on my right hip that popped up during pregnancy, but still haven't resolved almost 9 months later. I have the nearly constant feeling that there is a hair on my left hand that never exists. I've had some facial muscle weakness/fatigue that I notice while brushing my teeth, eating, or reading aloud to Zoe.

Nothing so substantial that I've felt the need to even visit my Neurologist, but also not normal.

Unless it is normal. I would say that is the curse of a chronic illness. At least for me. I constantly second guess myself. Maybe all people have these little things? Our bodies are complicated machines that misfire all the time, I'm sure everyone feels stuff like this.

But then, I do something like, oh...chop an onion...and pass out on the couch at 2 pm, because that is literally too hard for my body. Only then do I remember why I have the two activities a day rule. Why I have to just sit and rest the entire time my children are sleeping even if there are things I would rather be doing (almost anything). Why I can't do dinner or a night out that messes with MY bedtime without having a plan for rest and help the next day.

And those things aren't normal.

If I work for a couple of hours then I can't make dinner. If I take Zoe to the park then I can't hold Aleko if he needs me to rock him. If I read a book then I'll be too tired to stay awake and catch up with Yannos at the end of the day. It's a giant jigsaw puzzle. Sometimes the pieces are easy to fit together and sometimes I really struggle to find any that match. Sometimes I don't mind looking all day for one particular piece and sometimes I don't feel like doing a puzzle. It's complicated. And not in a Facebook relationship status way.

Yannos is once again participating in a Bike MS event with some of our friends. Except this year he's riding 130 miles. My goal this year is to ride ONE mile on a bike ;)

Here is the link to donate to the cause...



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    1. I love you, Ashley. Zoe and Aleko are lucky to have such an amazing mom.