Let me begin by saying that this post is of a more serious nature than normal and since this is a style blog, I won’t be at all offended if you skip over this and head straight for the shots of my fabulous bulldog sweatshirt (and my fabulous actual bulldog who is making a guest appearance today). Those of you who have been with me for awhile know that I rarely never really get too personal around here. Although I do post photos of myself for all the world to see, I’m still very private by nature both in real life and on the blog. The thing is, I have felt compelled for awhile now to write about this both to explain why my posts have maybe been rather lackluster and sporadic recently, and also to share a little bit about something most people probably don’t know a whole lot about. Chronic Fatigue Syndrome…ever heard of it? Well, I have it. I cringe to even use that name because it’s really quite demeaning and a substantial understatement in regard to an illness that is very, very real. It was just recently renamed SEID or Systemic Exertion Intolerance Disease which really isn’t much better…that just sounds like an uber creative way to say lazy. The sad reality is since people who are living with it don’t look sick and they aren’t dying it isn’t taken seriously. Most people who have heard of it seem to think things like “Take a nap” or “Go to bed earlier” or the even better “You’re just lazy”. Here’s the thing, if you truly have it throwing more sleep at it doesn’t fix it. And while it’s thankfully true that I’m not dying, it does do serious damage to my quality of life.
I was first diagnosed about 13 years ago. I underwent every type of medical testing known to man; some of it excruciatingly painful. Trust me, if anyone ever offers you a spinal tap, take a pass on that…I’d rather birth a whole litter of babies than go through that again. In any case, due to the facts almost every test came back normal with the exception of brain lesions that showed up on my MRI, and I exhibited every single symptom, I was diagnosed with CFS (or SEID if I’m bein’ trendy). The first few years were utterly awful. I couldn’t function for more than a few hours a day. The exhaustion is not the normal “I’m so exhausted from a long day at work” exhausted. I can’t even describe it; I wouldn’t be able to remain awake if you held a gun to my head. The all over body pain and headaches were horrific, I gained 20 pounds because my metabolism ground to a halt, and I think the worst part was how badly my brain was misfiring (in the CFS world it’s called brain fog). I had sticky notes all over the place at work because I couldn’t remember even the simplest things. It didn’t matter if I slept 4 hours or 18 hours (that’s not hyperbole I actually did sleep 18 hours once), I felt like I hadn’t slept at all. Since there is no treatment for it, you can only take medication to manage the symptoms. My doctor had my on a stimulant to keep me awake and I downed over the counter medication for the pain. Eventually after several years, the symptoms eased up enough to where I could function relatively normally without medication. That’s sometimes the case with CFS; there are bad periods and somewhat not so bad periods.
I’d been doing pretty well for the last 7 or 8 years, but for whatever reason about two months ago it returned with a vengeance. Hence, the 10 pound weight gain I was complaining about recently. I blamed it on the Oreos, but I knew the real reason. I was just trying to avoid it. It has gotten progressively worse to the point I often have to take a nap during the 40 minutes at the end of the day between when the kids leave and when the teachers are permitted to leave. If I don’t, I run the risk of falling asleep on the short drive home. I’m in so much pain that wearing anything but flat shoes is impossible. My supervisor brought me some paperwork the other day that required my initials. I put the pen to paper and could not remember how to write my own initials…I ended up printing them. That was a fun little moment of terror and embarrassment all wrapped into one package. I made a joke out of it, because seriously, what else could I do other than cry? I’m on the couch by 6:30 and on the weekends I’ve been averaging 12 hours of sleep at night. I’m not trying to be melodramatic, but when you hit 50, you realize that you can’t be wasting entire days of your life either asleep or so out of it you’re barely coherent. I finally broke down and went to my doctor Tuesday and thankfully she put me back on medication to help me function more like a human being. I just started it today, and I’m hopeful that it will at least improve things enough that I can be myself again until the symptoms ease up and I don’t need it anymore.
Please know that I am not looking for pity. That’s the last thing I want. I merely wanted to explain why my writing has not been up to par and in many of my photos I’ve looked dead on my feet. I thought about taking a break from the blog, but I truly do love it so much and I’ve grown to really care about so many of you and I love the interaction. I miss being me, and this is one thing that helps me feel like myself. Rest assured, even if I’m not commenting a lot, I do try to read your blogs as often as possible. I also hope that if you’ve managed to slog through this rather lengthy post, you walk away a little bit better informed about something that is misunderstood by so many.
Linking up with: Style Elixir’s Friday Fab Favorites, Welcome To The Weekend Blog Hop, Favorite Fashion Friday, Fun Fashion Friday, Passion For Fashion, Fashion Friday At Mummy’s Got Style, The Wednesday Pants Link Up.
Sweatshirt: JCPenney (No longer available); Pants: GAP (Old); Shoes: Target
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