While visiting Sue's blog today, I noticed that she is up for a People's Health Blogger Award. I decided to vote for her, and I am putting a "Vote for Sue" widget on my sidebar. Sue's blog is one of the first I found when I discovered I had CFS and started blogging about it. I was so new and lacking in knowledge when it comes to this disease! Sue was always there to open my eyes and show me different paths to understanding just what was going on with me. It was from her that I learned about post-exertional malaise, orthostatic intolerance, and LDN. And she seemed a "success" story. Even though she still has CFS, she seems to manage it so well, and she still has a life! That is what I aspire to. So, in a way, I would say Sue has been my CFS mentor, and she has become a very understanding friend. I wish her the best of luck!
Tuesday, October 27, 2009
Tuesday, October 20, 2009
I've thought about this ever since I watched Laurel's video on Treya's blog. One thing the stories about those severely affected by CFS seem to have in common is that they were moderate to begin with, but they pushed too hard and ended up in a severe crash they never came out of. I can't help but wonder -- is this the slippery slope I'm destined to head down as well?
For awhile, it seemed like my CFS had stabilized. I was functioning at about 50%. I knew what my limits were, and I largely stayed within them. Sure, I cheated once in awhile, but I rested up after and rebounded rather quickly. It made me feel like I was "getting better."
August pushed me way beyond my limits, and I fell to about 30%. I followed my recuperative routine. I added extra rests. I put further restrictions on my activities. I cut back on my nearly non-existent exercise. I learned and regularly practiced deep breathing and meditative exercises. And I haven't budged. Like Sue said in her blog today, I wonder if this is my new "normal."
It's funny how we grasp around, trying to convince ourselves that we have some control over this disease. I take a gazillion supplements without any evidence that a single one does any good. I pace, I rest, I modify my diet, I destress. I've become a ghost of who I used to be. And I tip-toe around thinking that if I don't disturb it, CFS will somehow leave me alone.
Well, I'm still a wife and still a mother of six and still co-owner of a struggling business. I am at the mercy of LIFE. Will the next blow be the one that does me in?
Sunday, October 11, 2009
Do you remember that children's game, Crack the Whip? You all hold hands, and the leader runs around, pulling everyone along. It's quite fun, unless you're the one at the end of the line. I feel like life is playing Crack the Whip with me, and I'm just trying to hold on!
I did something crazy this year. I signed my two younger boys up for soccer. In my defense, I signed them up in May, when I was feeling relatively well and expected to be feeling better by September. I didn't realize I'd be having a downturn in August that wouldn't relent for quite some time.
So, now here we are -- my boys have soccer practice Monday, Tuesday, Wednesday, and Thursday afternoons. We have games on Saturday. Can I just tell you how much they love it? My youngest son had never played before. He was so nervous his first day of practice! By the end of the hour, his eyes were shining and he told me, "I love it!" He is ready for practice half an hour before we have to leave. He asks me, "Is it time to go yet?" every five minutes. My older son isn't as fond of practice (because you have to run). But he loves playing in the games! He scored his first goal yesterday, and he was so proud! He is quite a natural at it -- he isn't intimidated at all, he has a good sense of the field, and he has some pretty good moves.
How could I not give them this little piece of normal childhood? Yes, it's killing me, and I don't have time for anything else (shopping? cooking? cleaning? bah, who need's them!), but I had to do it. I just had to.
I'm still working Tuesdays. My husband and I both wish I didn't have to, but there are no alternatives in sight. My husband, wonderful man, has taken on so much to ease my burdens, he is at near breaking point. If he worked my day, too, that would mean six days at work a week, plus the extra duties at home. We can't afford to hire someone else, especially when the people we've tried in the past have been so ineffective.
My oldest son was in a bike accident a couple of weeks ago. The front wheel of his bike came off, and he hit the street at relatively high speed with his face. He suffered lacerations, abrasions, a broken tooth, and a broken nose. Luckily, he was wearing sunglasses, because they were destroyed but saved him from damaging his eyes. My husband was at jury duty and I was at work the day it happened. Of course, I closed down the store and spent the day with my son in the emergency room. He looked so terrible -- we jokingly called him a zombie. I thought I was holding up pretty well for him. But, when my husband finally got back and relieved me at the hospital, I broke down completely sitting in my car in the parking lot. Boys! If they don't kill themselves, they'll kill their mothers.
I tried to go to church today, even though I knew I wasn't up to it. I love the feeling I have when I'm at church. I stopped to talk with a friend, and half way through our conversation, I was crying (I'm an emotional wreck on my bad days!). I stayed for about 15 minutes, just enough time to take the sacrament. While I was there, I saw familiar faces and the familiar routine of people going about, serving, teaching their classes, taking children to the bathroom, etc. Oh, how I miss it! I ache.
So, I'm just hanging on right now. Barely hanging on.