Bedtime, All In a Day's Work

I just finished making dinner and truthfully this was about the only thing I did today. Pippi laid faithfully by my feet to catch any droppings. I think she thinks she's helping mom so she doesn't have to bend over.

We just got back from LA last night and I am emotionally and physically tired. I slept nearly all day today and had a hard time getting around in my house. I was in LA for almost a week and 4 of the days were without Jason. Every time something changes in my daily routine, or life, my body has to go through some major adapting and compensate to any little change.

Personally, I love change but my body votes heavily against it. The "change" can be anything from sleeping in a different bed, showering, how far I have to park my car, how the street inclines and differs from what I am used to, counter heights, chair heights and the list grows every day.

My visit was busy and I had lots of meetings, many of which were with LA Times.

Obviously this is great for awareness, but emotionally and physically it got hard towards the end of my visit. I cried alot on this trip. In fact I cry more recently and for some reason this year has been tough. I share this because I know there are some patients that read my blog and I think it is important to be open and honest. I don't want them to think that I'm perfect. that I never get upset about it.

In fact, if I wasn't expressing sorrow, I'd worry more about that. No matter how positive I may seem it is still hard. The positive face is not a facade, what you see is what you get with me, but I still experience really difficult times.

There is a statement that I hear often and it is very telling. "Kam, wow, you look great. You look healthy..."

I realize visually I may look fine. I look kept, my hair isn't crazy, I'm smiling and I don't have food all over my face (or do I?).

But my body is anything but. On the inside I am deeply conscious of all my physical struggles and it is a constant challenge. When my body is physically challenged to its brink it can be hard on the spirit. I think it is because I am at a point where going into a wheelchair would relieve me physically and in essence potentially gain more independence, but I am trying to keep myself walking. I need to keep myself walking.  

A chair presents problems, too. In some ways I would gain the ability to move around faster but lose independence as well. 

Another one of my friends I met with was shocked to hear that HIBM was debilitating.

Now, I've told this person more than a few times that my condition is debilitating, progressive, could reach paralysis-like symptoms, quadriplegic state (though HIBM is not nervous system oriented). I'm not sure how many ways I can explain what "debilitating" means and sometimes it is truly frustrating. I feel like no matter how much I talk about it, no one really understands what I am saying.  

It has only been recent that I have started describing the potential prognosis as quadriplegic state and I know this may be hard to hear, but I just don't know any other way to explain the seriousness or the sense of urgency attached to it.  I imagine it is an abstract concept to many. 

How can someone so young, someone I went to high school with, someone I went to college with, someone I played soccer with, someone who is walking right now in front of me get to a debilitated, bedridden state?  

***I must note that not every patient ends up this way and every patient progresses differently.

I have to stop typing now. I'm in bed hunkered over my laptop and having a hard time with my neck. This is a recent weakness. If anyone was here watching me type they probably wouldn't notice that it was hard for me, but every muscle in my neck is working overtime to do something as simple as holding my head in this position.

It's bedtime. BED, we shall continue our day-long love affair.