Eleven years ago today, I woke up with an incredibly sore throat, feeling achy all over, and thought I had caught a virus. You all know how that story ends.
It is still amazing to me that my life changed so dramatically that day, and I had no idea what a momentous occasion it was. In fact, I didn't even stay in bed. We had planned on taking a day trip to Baltimore for a little winter getaway and taking the kids to the National Aquarium. We went ahead with our plans because we were all looking forward to it. My memories of that day are both foggy and remarkably clear. I spent the whole day feeling so very sick: the pain in my throat more severe than anything I had experienced before, so lacking in energy that I had to lean against the handrails as we walked past the aquarium exhibits, and my mind feeling like someone had stuffed it with cotton.
Looking back, though, I recognize that how I felt that day is exactly how I still feel now, 11 years later, during a severe crash. ME/CFS arrived that day, all of a sudden and yet completely without fanfare. How could something that changed my life so completely start in such an ordinary, insignificant way? It would be months and months before I realized my "virus" wasn't going away and years before I really accepted that.
March 2 - my Illiversary - used to be such a significant day for me, a reminder of all I had lost. Now it just feels like any other day. Yes, my life is dramatically different than it was pre-March 2, 2002, but I have adjusted and adapted to my "new normal." I'm no longer lying on the couch waiting to get better; I have long since resumed living my life. It is just a different life than it was before. I still have many restrictions and limits that define each day, but I have tirelessly researched treatments and have found several that have helped me get up off that couch and resume some version of my life (primarily treating sleep dysfunction, Imunovir, low-dose naltrexone, and beta blockers).
It's a different life, but it is mine.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
And you tirelessly give help to so many other people too!
ReplyDeleteIt's always a bit emotional reading other people's stories of becoming ill, as it makes me think of mine. Not nice to look back on, but doing so we can see our progress!
Bah and humbug to illaversaries, but I just have to send you huge kudos, because (as I hope you know), I think you adapt spectacularly, and share it all with us with bravery and warmth. Thinking of you!
ReplyDeleteAw, thanks NTE, for such kind words! That means a lot to me :)
DeleteI still remember the day, but not date, of when I could no longer do a simple walk...and thinking...what is going on? I still many days still feel like that despite so many doctors, so much new info confirming what i "know" - i am sick...and yes finally coming to some terms with it...thanks for sharing Sue.
ReplyDeleteAmazing all you do with in the "new" life...xo HD
It's been 9 years for me with ME/CFS, but I can't say I remember my illiversary. For me it just built up over time until I realised something wasn't right.
ReplyDeleteIt's a good point you made about having a "new normal". We've just got to get on with living our lives and not just sit on the couch in a swirl of guilt and self-pity.
I try to get something done every day even if it's just learning something new, so I can feel some sense of accomplishment and progress.
Heres to a future post somewhere down the line for a 'recoveryersary'
ReplyDeletexxx
This is such an excellent post. Although I'm trailing behind you in the coping journey (I fell ill with ME/CFS in June 2011), your post perfectly explains how I feel about being blindsided with a chronic illness. It had such an innocent onset, with symptoms not unlike many other flus I'd had in the past. This one just never went away. Looking back on that day, and the day before--my last healthy day--I have a very strange mix of emotions. But mostly, I try not to dwell on it too much.
ReplyDeleteI hope you are doing well. I always enjoy the updates on how you and your family are getting along.