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Chronic Fatigue Syndrome Community

Getting a CFS diagnosis probably felt exhausting. Get support from others ... more

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kimber1273

Joined: 02/05/2010

My Story:

My goodness, how do you start a story that began many years ago?

I had a traumatic childhood, accidents and illness that might be the explaination to my CFIDS, FM & Sjogren's. Life now isn't what I thought it would be, but I've made many changes in my life to accomendate these illnesses.

First, finally dx with FM in 1996, CFIDS followed in 1998 and then Sjogren's in 2006.

I had always worked in health care as a Reg. Respiratory Therapist, 12 hours shifts, different shifts. One day I just couldn't get out of bed, I slept for 29 hours straight. That's when I knew something wasn't right.

When I got my dx, it was relief, I knew the name, but what was it? I started reading and researching everything I could find. This is the best thing you can do... educate yourself, arm yourself with information.

I tried to work for 2 years after my dx, but then had to quit. My Internal Med. Spec. told me to file for SSD. I started keeping records of every doctor visit, lab test, x-ray, anything that pertained to me health.

The best piece of advice I ever got was from him. He flat out told me not to lay around, that my body would become adjusted to it and I wouldn't be able to do anything then. He said " always push yourself, but know when to stop pushing.".

I first applied for SSD by myself and was turned down. I decided I didn't have the energy to fight the Government, so I hired an attorney. My SSD was approved 10 months after the first time I filed. So don't ever give up.

I have learned to do things one does a little different, save the energy for when I need it most. My husband is the best support I have. He understands when he comes home from work, nothing has been done and I'm still in my pj's.

I've learned to break up tasks into shorter periods, taking many breaks. I used to go at things like "I was killing snakes!", as my hubby used to say. I know if I over-do, I pay the piper.

But there are times when you just want to do something you know is going to knock you down for days. But then you stop and figure if the activity is worth it. And most of the time it is.

I'm 52 and we have 2 adult sons. Hubby and I have been married 36 years. One of our sons' has three boys, 3 times the fun. When something they want to do comes up, I go for it. They come first in my book. And I'm not letting life pass me by! No way....

My grandsons are what keeps me going. Sledding down the hill? Oh yeah, but they have to drag the sled back up and help me up if I fall down, LOL!

I still feel the need to help people, so I became a CASA ( Court Appointed Special Advocate) for children. I speak up in court on the child's best interest. I do not work for DCS, but along side of them. These kids are in the welfare system due to neglect or abuse in their homelife. At times it's frustrating, but then when things work out good, it's very heart-warming. It's a volunteer job, and only takes a couple hours a month, but it gives me that helpful feeling I need.

I'm always looking around me, focusing on the positive. It's hard to do, you are hurting and that's what your brain keeps trying to tell you. But look further, Are the leaves turning a beautiful color, hear the birds singing, smell fresh cut grass? Things like this can really improve my outlook.

I love being outside planting flowers. But I can't dig the hole. hubby does that for me, then I put the tender plant in and cover it. I love the smell of dirt and getting my hands dirty. It's so relaxing for me.

I hope you can find something helpful out of my story.... you can always post to me....ask anything you need to know about this journey we are all on.

Thanks for taking the time to read this....

Kim

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I was just wondering if you were referring to Cranio-Sacral release therapy? I go a...

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