Thursday, February 16, 2006

Our Approach to Living with Chronic Illness

My son and I both have a debilitating immune system disorder known in the United States as Chronic Fatigue Syndrome (CFS) or Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Although the exact cause is not yet known, recent research breakthroughs are beginning to identify the genes involved in CFS and unique spinal fluid proteins that exist only in people with CFS. There are no effective treatments yet, although we've found a few approaches that each help a little.

In this blog, I'll share my thoughts as we negotiate the daily challenges of living with CFS.

After almost 5 years with this unpredictable illness, I've experienced all kinds of emotions - anger, grief, depression - and then experienced them all again when my 11-year old son became ill. This illness seems particularly unfair when it attacks children because of the limitations and restrictions inherent in it.

My son and I are the lucky ones, though. We seem to have "moderate" cases of CFS. There are many people afflicted with CFS - both adults and children - who are completely bed-ridden and unable to leave their homes.

We've worked through much of the depression and other negative emotions and have moved into a stage of acceptance, where we're trying to adjust to a "new normal". Our life is quite different now than it used to be, but we're learning that we can still find joy in each day.

Our approach now is two-fold. I remain hopeful that effective treatments will be found and support CFS research as much as I can. Increased medical costs and the loss of my income have made our finances tight, but we donate what we can to research, and I particpate in CFS studies whenever possible. In the meantime, though, we try to accept that this illness is a part of our lives. With CFS especially, it is critical to learn to live within your limits and not fight against the illness. CFS includes a unique characteristic: an intolerance to exercise and stress. Going beyond an invisible limit in either stress or physical exertion leads to a crash, a sudden worsening on symptoms that can last days, weeks, or even months. So, my son and I try to pay attention to our limits. We rest proactively each day and take the time to recover whenever we feel our symptoms increasing.

Here I'll chronicle our efforts to get on with our lives and learn to live with CFS. I'm interested in hearing from others living with CFS as well.


Anonymous said...

Great blog. It's almost support group like given that I don't really know, and I could change this, or hang out with others like us. I've had CFS for 13 years and what you discovered in 5 took me this long! The only other 3 things that have made a significant difference are: treating my parasites, taking cortisol, and radically altering my diet. :-) peace.

Sue Jackson said...

Thanks for the nice comments. Yes, blogging is almost like a support group! It does help to know that we are not alone in living with this crazy disease.


C_Dubs01 said...

Wow it inspires me that you started a blog this long ago and still continue to write it. I have just started a blog myself in the hope it'll help xx

Sue Jackson said...

Thanks for taking the time to leave a comment...and congratulations on starting your own blog! Leave me a link so I can check it out.