Chronic Fatigue and autism go together like peanut butter and tuna fish. A timeless sandwich combination that has been a staple of childrens’ lunches for years. (I recommend tossing a few potato chips in the middle. Mind . . . blown.) Trying to parent with Chronic Fatigue is difficult (sometimes simply not even possible) under the “best” of circumstances. Trying to parent with Chronic Fatigue when you have a child with autism? There are no words. Just tears. The guilt and frustration is just completely overwhelming. I was discussing the issue with one of Jack’s home ABA specialists and I told her I would gladly trade CF for any visible illness. Because people simply don’t take CF seriously. They just write you off as a lazy, primadonna parent who needs to think more about her kids and less about herself. Nobody thinks that about someone who is visibly ill. And do I really mean that I would trade CF for breast cancer or some other horribly painful disease, just so people would take me seriously? No, of course not. There are far worse things to have than Chronic Fatigue. But I wish people would understand that it’s no walk in the park.
I think a lot of people assume that since I battle depression my fatigue must be a physical manifestation of my depression, but it’s not. I’m sure the two are related, but my depression is actually well-managed with my current dose of Wellbutrin. So I’m not clinically sad while I’m lying there in bed all day. So far from being clinically sad, in fact, that I begin to doubt I even have Chronic Fatigue. I second guess myself and how I’m feeling every single day. That’s when the guilt becomes cannibalizing (Speak & Spell would be sternly reprimanding me for my incorrect use of the word “cannibalizing”, but Ima go with it anyway.). And so you get out of bed and toss in a load of laundry just so you don’t feel like a completely useless, horrible excuse for a human being. Then you discover that those six stairs separating you from the washing machine might as well be Everest. Yes, that’s a colorful exaggeration, but when you find yourself wincing in pain because your muscles are screaming over the amount of effort it took to climb those stairs and your lungs are desperately gasping for air, you are reminded that your Chronic Fatigue is a very, very real thing. It’s easy to doubt yourself when you’ve spent most of the day lying on an incredibly awesome TempurPedic mattress. Something that requires no physical exertion. But the second you try to pretend that you’re a functioning member of society you are abruptly reminded that you do not have the energy to be a functioning member of society. The guilt then becomes compounded by heartbreak.
I don’t know why my Chronic Fatigue kicks into overdrive every summer. It wasn’t a pattern I recognized until this year. And because in the past I never paid attention to when the extreme fatigue kicked in, I also never paid attention to when it lifted. But I know it does lift at some point. Then I just have “normal” everyday extreme fatigue. This summer has been my first gluten-free, casein-free (aka pizza and Frappuccino-free) summer; the first year I couldn’t just chalk up the fatigue to bad eating habits. Also the first year I didn’t self-medicate with caffeine and Treat Receipts. So I’ve had the chance to experience it in all its glory. And it is a delight! Thanks to Chronic Fatigue, I now have the perfect excuse to not parent, not cook, not clean, not do the laundry, not go grocery shopping. Neglecting my personal hygeine has also been a fun, unexpected side effect of my fatigue (“So you’re saying that I should drag my lifeless body out of bed/off the couch and STAND in the shower for 20 minutes just so my hair doesn’t look like the feathers of an Exxon-Valdez duckling, pre-Dawn? Sounds like a lot of work for someone who’s just going to end up back in sweatpants 21 minutes from now.”). I haven’t had my hair colored in months because when I had to choose between sleeping and looking good, sleeping won every time. Which is why I do not currently look good!
There I am on the left with my sister. Lookin’ pretty rooty! Plus, I’ve still got 30 lbs left to lose so it’s just a terrible photo overall. But I’m actually awake, which is a rare phenomenon that I experience rather infrequently.
Sleeping trumps EVERYTHING. So it was time to discuss it with my psychiatrist (Did I, or did I not, just sound like a Levitra commercial?). My old psychiatrist knew about my fatigue and had prescribed me Ritalin, but I never took it because I was wary of taking a drug that I consider to be the Stepford Wife/Perfect Mommy drug. Moms pop a few of their kids’ Ritalin and suddenly they’re serving gourmet meals at 6:00 pm and cleaning the shower grout with a toothbrush at 3:00 am. I was fearful of getting hooked on the stuff. But this year I had lost the luxury of being indecisive. I needed to take something, end of story. My sister-in-law told me about a prescription called Provigil, which is used to treat Chronic Fatigue. I went to my new psychiatrist (Not a huge fan of this guy. I feel like less of a patient and more of a deli ticket to him, but my former psychiatrist has retired. Which totally reminds me of the episode of 30 Rock when Liz tells Jack that her gynecologist just died. Because that’s how my brain works.) and described the fatigue. He literally started lecturing me on adding more protein to my diet and of the many benefits of Greek yogurt. I tried to be respectful and not burst out laughing at him, but I told him ‘Okay, we are waaaaaay past eating more protein. I am bedridden!’ So he mentioned Provigil and told me it wasn’t a stimulant like Ritalin. I picked up the prescription the next day. (FYI–I know I sound like I’m schlepping for Provigil, but I assure you I am not. If you saw my house you’d know we’re not playing with Big Pharma money.) Within a few days, the fatigue was simply GONE. As if it had just finally gotten bored with me and left to bother someone else. I imagined the prescription would make me feel like I’d just downed a Trenta Americano, but that’s not what happened. I wasn’t jittery, I didn’t feel caffeinated. I just simply no longer felt tired and achy. It was definitely one of those “too good to be true” experiences. Reality hit after about a week when I started getting dull, all-day headaches. The kind that make you feel like you’ve got a brick lodged over your eyes. So I saw the doctor again and he had me step down on the dosage, which left me unable to get out of bed the next day. I talked to him a few days ago and he wanted me to try splitting up the dosage so I was taking half in the morning and half in the early afternoon, but I quickly realized that wouldn’t work either because I’d be out of commission until the early afternoon dose kicked in. So I put myself back on the full dose and we’ll see if the headaches go away in a few weeks. The good news is, my blood pressure is fine (In fact, the nurse said it was the best blood pressure reading she’d taken that day. Jealous much?) and the medication hasn’t given me heart palpitations. So I’m going to go toe-to-toe with these headaches for a bit and we’ll see what happens. This dosage of Provigil only keeps the CF away for about 12 hours so I’m still in bed for the night at 7:30 pm, but I’m fine with that. I’d rather still be sleeping too much than be up at 2:00 am watching reruns of Law & Order, no matter how much I love Jerry Orbach and wish he was my grampa.
Huge upgrade from having Train Man as a grandfather!
I’d prefer not to even attempt a dosage increase right now. Don’t want to taunt the headache monster.
So there you have it. As usual, I began writing this post with an entirely different objective in mind, but this is what came out. And wordpress isn’t letting me insert pictures for some reason, which is frustrating because I like my posts to be more visual. Helps keep them more interesting since I am soooooooo wordy!