Friday, March 11, 2005

Finally a Friday....

This has been a long week for me. I have been so weak and fatigued. I try to go to Curves 2-3 times each week and walk the days I don't, but it's getting to be such a struggle. I'm very tired by the time I get home from work. It's so hard to know if I am overdoing it, or not pushing enough.

I keep hoping they will find something else that is wrong. Something that we can fix. But all the things they test for come back negative. I know that should make me feel better, but it doesn't. I don't want this nasty disease to have control of my life. I want control. I want to tell it to go away, to leave me alone. But there is no control for MS. It goes where it wills, when it wants, and takes a course that we can do nothing about.

I feel myself losing ground. The numbness is spreading, the pain is increasing, and there is nothing I can do about it. I'm not ready to let it take me down yet!

Time Lost Posted by Hello

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 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.....