I've worn a convincing mask for 11 years. That number just makes my heart flutter. It's such an unbelievable number. It's been so long, it feels like forever. Other times, I'm still hoping for a complete remission. Look up the stats on that. Sadly, after 11 years, with no improvement, and, in fact, a marked decline in the past 2 years. I've not only got this condition, trying to chip away at my body from the inside, no way to stop it, and I've also got basic math on my case as well. I'm AGING as well. I suspect that the change in my condition, is somehow connected to menopausal changes as well, even though as yet, I've felt NO indication of "the change" .... I'm only 51, it may be a few years more, but my "gut" tells me there's a natural reason for the ongoing flares over the past 2 years. One thing that happened was my acceptance that I'm not going to wake up one day, and feel like the GOAT me, the one "before" ... It's been rough coming to terms with all of this. I'm not sure whether I mentioned this already, but my youngest (of 4 kids) is 16+ and mentioned this summer that she "really doesn't remember me being healthy". The most heartbreaking part is that I was not struck with M.E. until March 2007, which would mean she was 5 when I got sick. I had been suffering with a lot of back trouble since her pregnancy, my back was always a problem (since puberty) but for some reason, I never felt it "recover" from my last pregnancy.
The guilt is heavy. I always knew I was going to have a family. Being a mom was all I ever wanted, and here I was, suddenly unable to parent effectively. I couldn't even care for myself, how could I care for my kids? (At diagnosis, my kids were 17, 15, 9, and 5) They did not, in fact, ask to be here, and they ended up a bit shortchanged, in my opinion.
To top it off, I ended up with an illness that's really hard to "see"... If I had cancer, and lost my hair, people would know without asking that I was fighting something. With M.E. you'll only see me out and about when I'm well enough to do so, making it unlikely anyone would recognize that I'm actually ill. I get many crooked looks when I use my handicap parking pass, and it's exhausting imagining explaining to everyone that even w/o a wheelchair, I do have a medical handicap. I guess it's ironic that I'm "fortunate" to not deal with that often, since I'm not often well enough to GO out. Lucky me.
Lucky me.... yeah. I hear that. You're so lucky, Bex, you "get" to lay around....
What the actual f@ck! Let me clear something up, people. There's not a person alive that would "choose" this life. I'm caught in limbo, knowing I'm stuck there. At 40, my life did an about face, and I've been trapped there ever since. My typical sensation is that of the onset of the flu. Every.Goddamn.Day. This illness has chipped away and eroded every relationship I've had. It's extremely isolating. My older two kids were almost grown, ready to embark on their own life journeys. I can't stand the thought that might be interrupted, and it would be my fault. I'm not concerned that my M.E. is terminal, but I already know it's shortened my initial life span. My body fights itself 24/7. That's got to weaken a few things. But being a burden for the rest of my days is not a notion I am able to think about right now. I've been through all of the stages of loss and acceptance. I'm a bit embarrassed that it took 11 years to get anything close to acceptance, but I was just certain if I kept being optimistic, eventually I'd just recover. Yeah, that's a big piece of Pollyanna Pie. I know. Now, I'm ready to just focus on maybe bringing information or guidance, maybe even just be a support for someone who is newly diagnosed with M.E.
I may be different, but I'm still alive!
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