Wednesday, March 02, 2016

14 Years Ago Today...

Happy Illiversary to me!
14 years ago today, my life forever divided into Before and After, though I had no idea at the time.

On March 2, 2002, I had a typically active Saturday - step class at the Y while my sons were in their swim class, grocery shopping, cleaning the house, and then having friends over for a dinner party. The only sign that anything had changed was that I had a severe sore throat at bedtime and felt more worn out than I normally did.

The next morning, I woke up feeling horrible and figured I had some sort of virus, but we went ahead with our plans to spend the day in Baltimore with our sons. I felt awful through the whole thing. In this blog post from my 7th ME/CFS anniversary, I describe the surreal experience of that trip.

The funny thing is that even though I felt so bad that day, I still had no idea that my life had just changed dramatically...forever. I thought I'd feel better in a few days. And, in fact, I did feel a little better after about 5 days, well enough to go visit my newborn niece, though, of course, I quickly went back to feeling sick in a crazy up-and-down pattern that seemed completely random at the time. It would be a full year before I finally got an accurate diagnosis of ME/CFS (and I know I am one of the lucky ones for diagnosis only taking a year!).

My husband and I in Baltimore this weekend
Coincidentally, my husband and I spent this past weekend in Baltimore again. I'm happy to report that it was much better than that long-ago trip 14 years ago, mostly because I know my illness and my limitations now and have learned to live with my restrictions. I took two naps on Saturday, limited my time at the art museum to under an hour, and wore my heart rate monitor everywhere. We were back in our hotel room watching Netflix in bed by 8 pm! Still, we had a very nice weekend together, and I call that a victory, especially since I can still remember - vividly - how horrible I felt on that trip 14 years ago.
In front of the Baltimore Museum of Art (I'm awful at selfies!)
I used to get upset every March 2, but I have long ago accepted my "new normal," and I am quite happy with my life now. Of course I would prefer to be well, but I've learned to live for today and I still have plenty of hope for the future, too.

I am feeling pretty crummy today, ironically, which is fairly uncommon for me now to have a bad crash day. I suspect much of this crash is due to emotional upset over some family members - you'd think they'd understand after 14 years, but some of them never will. Plenty of treatments have helped my sons and I to improve our quality of life. As we often say, nothing helps a lot, but a lot of things have helped a little, and those little improvements add up.

So, Happy Illiversary to me!

Studies show that about 80% of those with ME/CFS can name the exact date when their illness began.

How do you feel about your anniversaries of getting sick?


5 comments:

  1. October 2003......I still have not completely acceptd my normal

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  2. This summer will be fourteen for me too, I forgot you got sick in 2002 as well. The anniversaries are much easier the last few years…I'll never forget, however, feeling well is so hard to remember and that old life is so so long ago that it is a lot less potent.

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    1. Oh, that's right - I'd forgotten we got sick around the same time, too - Toni Bernhard, too. I agree - it's hard to remember now what it felt like to be able to do anything I wanted!

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  3. It'll be 18 years for me this year, and I'm only 33 years old. I've felt this way for over half of my life - not a milestone I care to remember!!

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