Friday, March 06, 2009
Blah, Blah, Blah
Another week has come and gone. We've started yet another month. This month marks the 3rd anniversary of my MS diagnosis. Yippee! NOT. The past three years have been a real MS roller coaster ride. Actually the past 4 years have been. Seems the more I learn about MS the less I know. About the only thing I really know is that MS sucks. It's different for everyone. Your MS is not my MS and visa versa. I wish we were all the same. Maybe they would be able to diagnosis MSers easier and earlier. Maybe research would move faster. Who knows. A nice dream isn't it? The positive is that there are researchers out there that have made it their life's work to find the answer to MS. God Bless them. I'm just trying to take one day at a time. Deal with my limited mobility without becoming completely frustrated. I'm trying to remember to be patient with ME. Trying to focus on the really important things in my life and find joy in simplicity. It's hard not to try and fight for control over MS. However, I HAVE learned that fighting MS is a losing battle. Took me a few years though. Now, I go with the flow. Accepting , "It is what it is". Some don't like that mind set. They feel it's "giving up". It's not. I take my meds and do what I'm supposed to do. The difference is I don't fight my body anymore. I don't push when I'm tired (well, I TRY not to push). I'm much better about listening to my body than I was when I was diagnosed. I still slip, but not nearly like I used to. TWF (Train Wreck Fatigue) is still a very real and regular presence in my life. There are days where the only thing I can manage to do is get dressed, then go back to bed. I miss the life I had even a year ago. I was able to work 60 hours a week without batting an eye. I miss those days. MS is also an isolator. Especially when you are mostly home bound. I only get out when Mark is home because I can't struggle with the chair alone. That sucks. I miss who I used to be. I used to be so independent. Of course, the job took up most of my time, but I also socialized a lot with friends. For me to leave my house at 6 am and not walk into the door until 9 pm was more the norm than not. I have found that a lot of my "friends" have fallen by the way side. They have simply stopped coming by and calling. When I call I get the machine. Hence, the isolation. So, instead of feeling sorry for myself and sinking into pure boredom, I started crafting. I actually stumbled onto something I like to do and I think I don't do a half bad job either. I make cards. It's fun to send a friend or family member a card you made. Yes, it takes time. Sometimes a lot of time if I'm having problems with my hands or I can't sit for long. Card making keeps my mind and hands busy. Not to mention it exercises the brain cells. What do you do to keep yourself busy?