Oct 072013

So many hours have been spent (wasted) contemplating what it means to have a chronic illness. As I sit here and try to remember what I have thought about, I can’t bring it up again. The thoughts are sort of spontaneous.

There have been loads of moments spent in nothing more than self-pity. And the why me’s. Pointless. Useless. Those moments do nothing to help me figure things out or find solutions for my situation. As if there are any solutions for my situation.

And what is there to figure out? Not a ding dang thing. It is what it is. It is what it is. I say that often but I don’t think I really believe it.

Sometimes I don’t really believe I’m sick. I know I am. But there are those moments when I think it’s all a big farce. I remember back in the beginning of this shitty journey, I thought many times about how I was only being dramatic or seeking attention or something. Of course, that’s not true. It’s here. I’m sick. It’s not going away.

So what does that mean to me?

I don’t know really.

My life is different in many ways, but not so different in other ways. Having Coach has made a huge difference. I know if this had come around while I was living the single life, things would’ve been much different. Without his support and love, I would’ve drowned in all the muck. I have a wonderful support system… Coach, my family, at work… all around me. I manage quite well. I’m not sad or angry. I laugh a lot. I participate when I can. I’ve got a positive outlook on most things in life.

I still work. I still go to games. I still go see my family on holidays. So what’s changed?

Mostly the way I feel. Sick. Just sick. And worn out… fatigued, all the time tired. Cramps and fire lade pins poking me here & there. What I wouldn’t give to have one day, even 1/2 a day of feeling good… feeling like my old self. The idea that I will never feel good again is overwhelming. The thought of wearing pantyliners every day for the rest of my life truly sucks. The thought of choking on my own spit, stumbling over my words and thoughts, of feeling like I have the flu every single day….

Last night I dreamed I was dancing. I loved to dance. It was a big part of my life for a long time. Dancing. Coach & I have NEVER danced together. There’s something about dancing with the one you love… it’s close, it’s intimate, it’s warm. I missed out on that.

I’m a hero. I’m strong. I’m brave. But I can’t dance anymore.

I hate pink. I despise pink. There, I said it. I refuse to buy anything that has a pink ribbon on it. I know that’s ugly of me. But I might feel differently about it if one day I walked into the store and saw orange ribbons on every damn thing in the store, or purple, or white, or blue.

I hate pink.

Wrapping my brain around the thought that I will have this fucking disease for the rest of my life… that it will get worse… that I will feel worse… I hate it. Just about as much as I hate pink

Being an adult is like looking both ways before you cross the street and then getting hit by an airplane.

  9 Responses to “On Illness”

  1. While I agree with you about MS (and though I love pink, I don’t love ribbons) I thought I’d share my take on living with MS. I think it must be a lot like being a recovering alcoholic; they have an illness and have to take it one day at a time. And so do I, for better or worse, from one day to the next. I am Webster and I have MS.

  2. SHERRI,
    GREAT post. Feel like it has been a while since I popped in to say hello, although I still do read each post. For anyone that has MS, this post will hit home, with the raw truth of it. No matter how much we can say we are ok, try to stay strong, and laugh about all the SHIT that happens…it is still there, and doesn’t go away, and WON’T. I would be afraid to write what you did, NOT for fear of others judging me, thinking I am whining or complaining, but for allowing for those thoughts to be put into words – that can be read out loud – because for me, that makes it real. NOT that it isn’t already REAL, but I have this stupid idea that IF I don’t say anything, MAYBE it will be a little LESS REAL.
    Take care my friend – and keep sharing your wonderful words:)

  3. You tell them honey!!!!!

  4. I was going to write another comment but then it got so long that I decided to just write an entry.
    Paradox. Coexist
    What I’m trying to say is that its odd and sometimes difficult to grasp that we have these terrible diseases at a time in our lives when we have finally found a measure of happiness and security. It’s like I’m happy and miserable. Argh!

  5. Me three. On MS and pink. And yes, I know that breast cancer can kill – but I hate that it gets attention and funding that other less ‘sexy’ cancers miss out on. Which is why I donate to cancer research rather than any specific type.

  6. You know I love pink. I’m a pink fanatic UNTIL I walk into the Department of Oncology and see it everywhere. That’s when it makes me sick, that’s when it literally turns my stomach. However, when I see a pink ribbon out in public or see a purple ribbon out in public and its there modestly, then I’m touched by it. I don’t like nor do I respect people who plaster their cars with pink everything and fight like a girl stuff. When their car and their clothing screams cancer survivor/fighter, MS, FMS or what ever else I’m turned off. I know that’s terrible, but I wonder what they get out of being a billboard. For me, its the near silent ribbons that touch me the most. That ribbon on the back of the car or dangling from keys, those are the ones that touch me because they say “me too.” The other ways feel as if its being shoved in my face.

  7. Amen! To just feel good for half a day. I can’t even imagine what that would be like anymore. It’s been so many years. I guess I use a different measuring stick now. How are you? Less crappy than I was yesterday. That’s the best I’ve got.

    I love this phrase, by the way: “Not a ding dang thing.” I may have to use that.

    Wishing us both the occasional moment of wellness or not noticing how crappy we feel. If only in our dreams. See you there!

  8. You have every right to feel slighted. It is a seriously messed up disease. I have a respite patient with MS and all he wants to do is go for a round of golf.

    I hate the pink ribbons too. When my mom was dying of ovarian cancer I hated them most of all. Yes, breast cancer is more common but you have a chance of surviving. Not ovarian cancer. She is a mean bitch and WILL kill. MS. doesn’t take prisoners either.

    I don’t know. You can complain anytime. xo

  9. Ya, I am with you on both the MS and pink.

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