Saturday, March 05, 2005

A new beginning....

.

A new journal....someplace to record the struggles, heartaches and triumphs of my journey with multiple sclerosis. Someplace to be who I need to be with this disease when everyone else just wants me to be "OK".

This is my first attempt at blogging, so please be patient with me on the mechanics of this format. I like new things....I like to keep learning and keep my brain growing...but I have found as I get older, it's harder to teach the old dog new things!

Approaching 50 and finding that the technology ceiling is looming just ahead. You know....those days when I will have to have my kids program my PDA. Our folks have pretty much given up on mastering the controls of the VCR and are really hesitant with a cell phone. I know my time is coming. I already find myself handing off a lot of the computer tasks to my 16 year old techno geek son for even "fun" tasks that I used to do myself.

I will probably focus mostly on my struggles with MS. I need a place to be able to release some of the pain and frustration that goes along with this disease....as well as the new discoveries about myself. It's such an odd insidious beast. We (from Club MS) often refer to it as "Living with the MonSter".

So much of what is tearing our bodies and minds apart is invisible to others. We look good! A lot of the things we experience, you may have even felt before. And you are always quick to commiserate with our struggles.

But it's the accumulation and depth of our symptoms that wear us down. Everyone has aches and pains from time to time. Everyone has weird little numb things or little blips in the brain occasionally. Everyone gets tired or weary, everyone gets lost or distracted once in awhile. But for us, or maybe I should keep this personal, for ME, it's not an occasional thing.

I have major numbness ALL THE TIME, I am tired EVERY DAY,
I am in pain ALL THE TIME. Ya, there are good days and bad days, but that is just a relative thing. Good days mean I am able to function with the numbness and pain, keeping it tucked inside. Bad days, you can't work around it. And so if you are to function at all, it's there, in your face 24 hours a day. And so you try to see through it....the fog, as best you can. But it's hard.

Today is a so-so day. Besides the physical aspects of MS, there is also myriad of emotional issues that follow me every day. We'll save some of those for another time.....

5 Comments:

At 10:15 PM, Blogger Joel Gottlieb said...

Blogging my MS experience clarifies what is happening and how I am responding. Surprisingly, it is also unburdening. Once it is in the public domain I am freer. Wishing you the best. Keep at it.
Joel
mstaichi.blogspot.com

 
At 8:22 AM, Blogger Orendon said...

My visit to your site, TinRibs, was the results of the immune system search for information regarding the subject A new beginning..... Even though some of the articles on the site may not support the immune system project, I must say, it’s an informational and very interesting site and its content will benefit many. Thank you for reading my comment.

 
At 7:51 PM, Blogger greenmoss & sunny said...

Joel is right, get it out here. sometimes it is scary to share with those we love. I am in the world of MS also, in NE washington.

sunny

 
At 5:48 AM, Blogger Have Myelin? said...

Blogging my MS experience is a way for me to complain online so I don't have to complain at home! Plus it shares with the world at large (as if they reallllly wanted to know) what MS is like.

We're a vain group, we MS'ers. (joke) No...I think that MS is so overwhelming that most of us are scared. It's different for all of us.

No one believes I have MS. Yet I have other friends in powerchairs with MS.

It's scary to think I'm one demylienated nerve away from a powerchair...thus there's that need for venting/blogging.

 
At 4:06 AM, Blogger Cameron VSJ said...

Hi,

I was hoping to get in touch with you about your blog. My wife is a cancer survivor and I was wondering if I could ask you a quick question. Do you think you could email me when you get a chance? Thanks so much.

Cameron

cameronvsj(at)gmail.com

 

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