I have decided to start this blog as a way to deal with some of the issues I am facing as I struggle with an invisible illness that is changing the very fiber of my being. I need an outlet where I can express my hopes, fears, frustrations, and challenges. This blog will hopefully serve as that outlet; a repreive, an oasis of sorts.
This process has not been easy for me. My whole life has changed. Once a busy and energetic mother, wife, graduate student, college professor, and volunteer who was constantly on the go, I am now only a shell of my former self. My family and I used to spend weekends hiking, biking, camping, canoeing, going to the theater and symphony, working in the yard, playing tennis or frisbee, and so many other activities that I deeply miss. Always on the move. That was me. Now I feel it is a great day if I am able to take a shower. The simple things wear me out. After a shower I have to rest. It is amazing how much my life has changed.
But I am a fighter. That is my nature. This disease cannot change who I am at the core. It may zap my energy and change my ability to be as active as I want to be; it may limit my ability to fulfill my career aspirations in the way that I had dreamed and it may change how active I can be as a mother and wife, but it cannot take away who I am. I will continue to fight this disease and the associated stigma with every fiber of my being. This blog is one way of doing that. It is my voice, and hopefully the voice of so many others that may be struggling in silence.
Kristy
7 comments:
Butterfly Girl-
Loved your entry. I will keep reading it. You go girl! Stay positive and I'll keep praying for you. How has your husband and kids been through all of this? Do you believe in "healing hands"...There supposively is a guy here in town that does it?! Love you
Anita
Butterfly Girl,
After reading the first entry of your blog, I feel lucky to have my health. I feel like I take too much for granted. I will definetly check your blog often for updates on your battle with cfs. I know you well enough to now mentally you are strong! You are "one tough cookie" so to speak. I have faith in your ability to try as hard as you can to find a solution or liveable way to deal with this..
Illinois Mary/class of 85:}
Thank you for sharing this with us. I continue to be humbled...
I'm so glad God has put you in my path.
Marilyn
I'm reminded of the GOLDEN GIRLS episode dedicated to this illness. Dorothy was suffering from it, and the episode was very powerful. Best wishes!
Butterfly Girl - I too had CFS back in 1993. I was off from work and life for 17 months. As a registered nurse it was one of the hardest things to face. But, I was like you, a fighter, not willing to give up. And I didn't. I didn't give up. Being one of the sickest with CHF that my Attorney had seen, I was also one of only two he had seen recover. I recovered. I can tell you some of the things I did to find my way back to health if you'd like. My name is Linda and my email address is Quiltnlynn53@aol.com. My very best wishes for your recovery!
Thank you for being willing to share your journey with this illness with all of us. It is going to help alot of people and also unites us in how we live our best life while managing CFIDS.
Renee
Hi, Kristy! Your story really hit home... I've suffered from CFS since Dec. of 1989 - such a long time now. Mine started with the recurring sore throats and sinus infections, antibiotic after antibiotic, and soon I was dizzy and weak every afternoon, then every morning as well, then 24/7. It's so weird to lay in bed and still feel like you need to somehow rest MORE - sink even LOWER into the bed or something. I know exactly what you mean about sleeping not helping. I used to explain it to people like this: If I sleep, it doesn't help, but if I don't sleep, I get much worse. :(
I have posted my whole story - even being in a wheelchair for 6 years due to the dizziness and weakness - on my personal site at ourlittleplace.com. I did find that by switching from regular products for cleaning and personal care to non-toxic alternatives I got probably 50-75% better. Something to consider at least! I also wrote a poem I think you can relate to called "Remember Me." It's all about how I felt life was passing me by and how everyone is moving on except me... It's on my site, too, if you want to read it.
I also know exactly what you mean about your arms feeling like they were carrying weights. I would describe that feeling as: I feel like every cell of my body weighs 100 lbs.! Like I could just melt into the floor... Jelly legs, could hardly walk, forgot how to spell my own name a few times... really a bizarre illness. I do wish more people understood that it's SO not about "just being tired."
Thanks for sharing your story (and for reading my post!)...
- Jacki
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