Saturday, 21 November 2009

The Truth of the matter

One of the big things I am finding that helps me at the moment with my BIH/Chiari is finding other people who understand and are going through the same thing as me. It can be a lonely place to be because I am torn between letting the problems take me over and getting on with life like nothing is wrong. I don't like to tell people how bad I feel most of the time and even when I do I tend to downplay it because I don't want people to feel sorry for me or pity me. In turn what that means is most everyone thinks I am "better", that I had the shunt surgery and am now "healed" but the reality is I will never be over it, these things will be with me for life and all I can do is take each day as it comes, smile when today is better than yesterday, suck it up when today is worse.

While I was in one of my support groups today I found this poem and it made me cry. It was like someone was inside my head and explaining in words exactly how I feel. Some of the things mentioned, I didn't even connect that they are illness related which made me cry even more knowing it's not just me being me, there is an actual reason for it. I have included the poem, I hope it give you a little insight into my life right now :)



Lost My Way

If you listen, I am here. We are the same in so many ways

Please listen closely as I speak at times, I cannot make my mouth produce the right words, yet they are there. Be patient with me.

Do not assume that today I can conquer it all, just because I slept all night through

Walk a little slower because like a child, I lose my footing too

Smile; do not feel that because I hurt that we all have to walk around in a state of gloom

Forgive, that I forget as I am not sure why, I always have the best intentions, I do.

Try to understand that no, I have not become cynical. I have temporarily lost my way.

Hold out your arms and be strong I need a rock, but I also can be yours in a different way.

Pain can change day to day, minute to second. I am not complaining I need to voice it

Inside it is still me. I am still fun, I just need to get strong.

Understand that one day, I WILL be the real me again. Right now I am just trying to get back on the trail but I have learned so much from the detour

By Devin Kalisz

2 comments:

DB said...

I haven't delved into your archives yet, so I had to conferr with Professor Google as to what BIH/Chiari is.
Gosh, almost daily I am finding strong & inspiring women Bloggers like you who are raising a family & doing all the daily things that I find tough, & dealing with so much of their own stuff as well (& still seem to hold their crap together better than me, I might add!).

Mel said...

AAWW, thanks :) You know, I think the same thing! I read so many other blogs and can't imagine living their lives when I struggle with my own so often but at the same time you just do what you have to do, if I don't keep putting one foot in front of the other I will never get anywhere so I just keep pushing!