Monday, November 26, 2007

Nobody Touch Me--I'm Diseased!

One thing I always want to know about people with MS is how they view themselves now as opposed to before being diagnosed. My diagnosis came as a total shock and my disease has been so aggressive I felt like I didn't have a chance to really understand what it all meant before they started pumping me full of steroids, doing spinal taps, shoving me into skinny tubes that sound like a plane getting ready to take off, you know, the usual routine after being told you suck so bad your own body wants to destroy you. The first year and a half was HELL. I am now nearing my 3rd anniversary of being diagnosed and am still working on my self image. What I would like to know from you, gentle reader, is how you put yourself back together again? Because, like Humpty, I can't seem to get it back together again and all the king's men probably would not hurt, so send them on over. I am still having a very hard time letting anyone get close to me--not just physically, you naughty king's man! So for anyone who wants to share I would love to hear your story...


Keith Landrum said...

Just came across your blog. Wonderful. Replying a bit late (5 years too late it would appear) but felt compelled to comment. I was just diagnosed this past september, on my 38th birthday no less. Thats in addition to the severe hearing disability I've had since childhood and being bipolar, so I've go the triple whammy. What has kept me going and given me self worth is the fact that what defines me is what I like to do, not my relationships, a job (which I now can't work my MS flare up is so bad, I can barely walk or stop from spasming. I love to read, and love to write and learn. THAT is what defines me as a person, nothing else. That is what makes me who I am, not my disabilities or my limitations, but what I can do. Just enjoy your life the best you can and seek comfort/self worth in pursuing your passions. Others will notice your zest for life and will be drawn to you, in spite of your disability. I mean come on, look at Stephen Hawking, there is a damn fine example of how to live life on your own terms.
Best of Luck,
Keith Landrum

Nikki said...

Well..better late than never I suppose. I am WAY late in my comment, but none the less, I felt the need to share. LOVE the "body so hates you it is trying to destroy you" comment..LOL. That is EXACTLY how I have felt from time to time. Especially when I get so dang tired doing the littlest of things. My MS isn't that aggressive thankfully, none the less, I have the attitude of "I don't have time for this" and continue to do things I have always done. Some things I have had to reel back on a little or take it easy doing them, but for the most part, I keep a positive attitude and go about my business. I refuse to let a diagnosis that I can't see, but surely can feel, stop me from being ME. I know who I am and how I was before I was diagnosed..and that is the person I shall remain come hell or high water. I won't let something take me away from myself. I do hope that helps in some way. I am sure this long you have made a way to help you put yourself back least I hope you have. I was diagnosed out of the blue in 2006 when I went to bed feeling fine and woke up the next morning numb from my chest down. I could only feel the pressure of the floor under my feet so I could still walk, but I had to be real careful because I couldn't feel if I stepped on sensation. I demanded that the dr who told me the funny tingling in my leg was from a herniated disc in my back. Needless to say, that dr was "on vacation" so I was sent for an MRI by another dr and they told me within 3 days what the problem was. Interesting journey to say the least as there is NO family history for me but that is ok. I don't have kids, will be 40 this year and until today..didn't know that I COULD have kids safely. NOW I will deal with that issue as I want to have at least ONE child since I am the only child my dad has. Fun times...and I say CHALLENGE ACCEPTED.