Monday, March 02, 2015

Happy Illiversary to Me!

13 years ago today, my life changed forever, though I had no idea at the time. I thought I'd share a bit of how it all started (this is excerpted from an essay of mine):

"How it Began: The Beginning of My Journey with ME/CFS

March 2, 2002, was a typically hectic Saturday. I went to a step class at the YMCA. My husband and I ran errands and worked around the house while our two boys played, and we hosted a dinner party for friends. By evening, I was feeling a bit run-down and had a sore throat. I woke up on Sunday feeling rotten and thought, “I must have the flu.”
It certainly never crossed my mind that I might be sick for the rest of my life. I was a healthy, highly energetic 36-year old and was very content with my life. I’d had a successful and exciting career that I’d left two years previously in order to spend more time with my family. I was married to a wonderful man, had two sweet sons, and was launching a new part-time career in freelance writing.  I felt as though my life just kept getting better and better.
Despite feeling awful that Sunday morning, I insisted we go ahead with our plans for a day trip to Baltimore. We stopped for breakfast on our way out of town and drove the hour south to the city to visit the National Aquarium, Harborplace, and the Science Center. I remember that day in Baltimore clearly, even though I felt like I was isolated in a strange kind of fog all day. I sucked on hard candies nonstop to try to soothe my sore throat which was worse than any I'd had in years. I can remember clinging to the railings at the aquarium, barely able to stay on my feet. I had never felt so sick before in my life.
Everyone gets sick once in a while, especially with small children in the house, so I figured it was a virus. Once back home, I settled onto the couch, let my husband take over much of the household work, and waited to start feeling better. After a week, I did feel mostly better and resumed my normal, active life. We even took a planned trip to my sister’s house in Connecticut to see my newborn niece.
A few days later, I felt horrible again – exhausted, achy all over, sore throat. Could I have caught another virus so soon? What was going on? This didn’t seem like any flu I’d ever had before.
After several weeks with no improvement, I went to see my doctor. He ordered blood tests for the most common culprits: mono, Lyme disease, parvovirus, and a basic blood analysis. The good news came back:  everything looked normal. So why was I still sick?
During that first month, I spoke with my grandparents in Rochester, NY. They were both sick also and had been for a full month. Their doctor told them there was a particularly nasty flu virus going around. I hadn’t had any of the gastro-intestinal symptoms they’d had or a significant fever, but I still figured I must have the same thing. They were beginning to recover, so I stayed on the couch and waited for my recovery to begin.

Journal Entry, 3/21/02:
Beautiful first day of spring, but I didn’t get to enjoy it much.  I had a very rough day and felt pretty depressed.  I burst into tears 3 times today – once over a TV show!  I feel very fragile.

I’ve been sick for 3 weeks now, and I’m getting a little scared.  I’m so sick of feeling tired and achy, so sick of the couch, so sick of not getting anything done!  I want my life back!  I want my normal energy back!  I want to exercise and play with the kids and go to the grocery store and feel productive!

I never imagined as I wrote those words that my “flu” would turn out to be a chronic disease that would change my life. "

© 2015 Suzan Jackson
 I'm sure the rest of that story is familiar to you - a year of blood tests and doctors' visits, eventually a diagnosis, etc. And, here I am, 13 years later.

I am feeling pretty good today (after 10 days on antifungals, finally getting the yeast overgrowth under control again) and in a good frame of mind. At this point, ME/CFS is an integral part of my life. It's hard to even remember life before piles of medication and supplements, afternoon naps, and carefully monitoring my activity level.

I feel like I am in a good place now. Emotionally, I am happy and rarely get depressed any more (though these past few weeks have been a challenge!) Physically, I am doing much better now than I was 5 or 10 years ago and have found quite a few treatments that each help a little bit - those little bits add up to feeling better, being able to be more active, and having an improved quality of life. (Here's a blog post in my most recent improvements).

I still hope for more effective treatments or even a cure, and the research news lately makes me optimistic that there is real hope for all of us (more on that tomorrow!)

So, Happy Illiversary to me! It's not really a reason to celebrate, but it does provide a chance to reflect on how far I've come. 

1 comment:

  1. I'm so sorry you've been dealing with ME/CFS for this long, but glad you have been able to accept ME/CFS as a part of your life. I'm also happy you're in a good place right now. Hope you continue to feel as well as possible.

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