I think I had a bit of an epiphany over the weekend. I went camping on a beach with some crazy people I know. It was great. Suddenly though, I don’t want to talk about being sick anymore. I don’t know that typing out everyday that I have a migraine and I’m really fatigued and all of my muscles hurt, is helping. In the beginning I started this out with some encouragement from a few different people that I should do it, and it might help other people. And if it even helps one person, then it’s worth it. But I think there is something more important at work here. I think the goal should be to show that you can have a stupid illness like that, and still have a happy life. A productive life. Sometimes people read what I write and tell me it’s really depressing. And I think, depressing for you? I’M the 27-year-old living on my parents couch! But the whole truth is, it could be way worse. I’ve got two feet, two arms, half a brain, and a sense of humor that seems to carry me through the toughest situations. I get that from my dad.
Anyway I’m not sure what direction this is going to go in. I’ll still give reports on how I’m doing though it’s hard to think that anyone reading this cares whether my migraine cycle stopped or how many pills a day I’m up to, or down to. The illness is a part of me, and something that happened to me, but it is not who I am. And I feel called to write about bigger things and do bigger things, even though at times that seems impossible. But I’ve come a long way already. It was just in January that I would dread walking to the bathroom, because it fatigued me so much. I still have a ways to go, but for the first time in a very, very long time, I feel like I am going to recover enough to do big things. Only the universe knows what’s in store, but I am anxious to see what lies ahead.
So no more elaborating about what I feel like. From now on, just assume I have a migraine and I’m fatigued. That way I won’t have to write it everyday. What I’m saying is, great health or bad health, I’m going to keep looking for the reason I am here and why I have a passion for writing. I have a feeling it’s not just to write a blog about being sick. That seems to diminish what I consider a gift that was given to me. I don’t mean to un-substantiate the seriousness or shittiness of this illness, because it is both. And everyone I talk to with it fights a battle everyday. I know the exhaustion of just explaining it. But I want the illness just to be in the background of what I’m doing. I don’t want it to have center stage. I want to show that life can still have meaning and importance, even if you’re stuck in bed. It may have been the reason I started this, but it won’t be why I continue. It’s time for something else.
FibroM.E.-Awesome 
I’d like you to know that I’d be very sad if you stopped writing about being sick for my own selfish reasons. I did a lot of stuff (degrees, working full time (50+ hrs), blah blah blah) while ‘pushing through’ this illness with a lot of meds and even more denial. When I found your blog, I somehow found it ‘ok’ to think about this bitch of an illness within me for the couple minutes of reading and reflecting. That hasn’t happened in the past 10 years. You’re giving the hard-headed, stubborn, working-too-much people in obvious denial a voice; the only voice I have found acceptable thus far in my journey. If you decide to move in a different direction, I totally understand. But, you dont have to think about it as writing about the sickness. Think about it as a small ray of light that is shedding on a same-aged individual’s deep, dark illness that has been pushed out of consciousness (or attempted to be) for so long. You write about things I preach to my clients and do not have the courage to admit to myself (I’m a Psychologist- we all get into the field for a reason- easier to discuss others’ problems). Anyway, thank you for giving part of me a voice for this long, and for however long you continue to write.
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Good call! I blog about what’s going on in my world and what I can do. I don’t dwell on the problems or what I can’t do, because that’s depressing enough in life, never mind on the blog :) It’s not a front; I do mention issues, esp the brain fog and fatigue, but I don’t want that to define me.
I am more than ME/CFS and so are you!
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Good for you.
You’ve got plenty to deal with without defining yourself as The Sick Girl (Who Blogs). Your posts here are funny, smart and wise. You’ve got a lot of other things to think about and focus on. The sad truth? No one wants to hear how miserable and ill and in pain we are. They just don’t. It’s boring and depressing to live it — and it’s boring and depressing to hear about it. (Although I made some nice $$ this month writing for Arthritis Today about my shitty, broken, needs replacing left (*^%$@@!@ hip.)
Don’t be the sick girl. Just be your awesome self.
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I can relate. I am trying really hard not to post health stuff on Facebook anymore. My daughter said, “Mom, you’ve gotta stop doing that — that’s why everybody is surprised when they see you out anywhere – you’re making them think you’re dying.” So I stopped, just like that. Ow.
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Gosh, after my CFS posting a few minutes ago you may think I’m a health food, tree hugging weirdo with wirey hair who hangs out at health food coops scoring free nuts from the fecal bowl of nuts. I insist I am not but it would be remiss of me to not pass on even more info regarding your health since it’s a major topic of your blog…A natural remedy that cleans out the liver and that shouldn’t interfere (check with your fave Walgreens pharmacist, of course) is–drumroll please–LEMONS. It’s a liver detoxifier. As well milk thistle is but that’s a herb so check again with that “evil” person in the white coat first. (Not that you would take any random inspired remedies from internet strangers. But I do hope you check out any reasonable info passed to you; it could be life changing.
Cheers.
P.S. I’m still reading through your FreshPressed blog so there may be more comments from me should I feel compelled.
Take care. Don’t believe everything your doctor tells you. In a roundabout way he/she is a mere robot that work in tandem with pharmaceutical companies (cough–the government). Nope, not weird, just awake.
Take care.
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I absolutely LOVE your blog. And I don’t read blogs. Like ever. But yours I could read all day long. (Which is not going to work out for me since I’m 32 and have a hubby—there’s your word—and kids and responsibilities that do not include sitting around reading your awesome blog all day. Bummer.) ANYHOW, the point is that this particular post really moved me. I can tell you’re searching for meaning and purpose in all this craziness. I wanted you to know that I’m here in a teeny tiny blip of a town in SC, ROOTING FOR YOU! Rooting for you to find the peace and purpose and meaning that you’re heart has started searching for. And I can’t wait to read the book that you will one day write when you’ve found these things.
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er… last comment today. really. just wanted to say that I had to make this call too last year and it was incredibly helpful. I guess if I’m really miserable I’ll still tweet about it but I don’t blog about it, I don’t usually tell my friends about it, I just tell people I’m ok and leave it at that. it didn’t make me hurt any less but not talking about Being Sick all the time actually made me feel less sick. I didn’t realize the difference until a few days ago when I said something about being hurty all the time and a schoolmate asked me why I was. I’ve known her a couple months and she didn’t know I had fibro. a couple years ago it was almost my whole identity. now it’s just this shitty thing I deal with in private.
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