The Fear

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Having a serious Chronic Illness will change your entire life, from the obvious to the not so obvious.  From the physical to the psychological.  If you some of the unlucky ones, you get to look forward to a life of it.  Sometimes, that future seems so bleak that it’s really hard to keep going.

So I sit here eying my chicken broth and regretting that soda I got for lunch earlier, it’s taking a lot to not feel down.  I am so hungry I think I could eat a whole pizza, yet anything I manage to eat doubles me over in pain.  I will eat though, I finally managed to get my weight up to 135 and I refuse to drop it!  I love looking like I’m healthy.  I love being able to look in the mirror and only see some of my ribs.  So I will eat.  Why?  Because I can’t afford supplements until next week.

When you’re sick, you tend (or at least I do) to only see the current time.  The fear is that this is all I’ll have for the rest of my life.  It’s hard to see beyond that, and if you do it’s only the negatives of the future… stronger drugs, failing organs, weak bones, surgeries, colostomy, ileostomy, fistulas.  I have to slap myself sometimes.

—-

So the above was from yesterday.  I ended up going to bed early, aka passing out on the couch.  I hurt really bad yesterday and today isn’t looking much better.  Chin up Buttercup.  It’s almost time for work, and although I would much rather be curled up in bed, I will go to work.  Why?  Because (come one now kids, you know the mantra) if I stayed home every single time I feel like crap, I wouldn’t have a life.

Humira will have to be today though.  I fell asleep before I could stab myself last night, which is annoying but whatever.   So I’ll do it after work today seeing as how I really don’t want to sit behind my desk (of awesome-ness) covered in hives.  Today is a day when I have to refer back to my blog post.  I really want to hate this body of mine, but I’m trying to remember that this is all I’ll get.  There is much worse out there, and this ol’ body has held up pretty good so far.

Today I will go to work.  I will pick up my kid.  I will clean my house and make dinner.  I will play outside with my kid.   I will work out, shower, and meditate.  Then I will rinse and repeat.

Stupid Crohns.

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8 thoughts on “The Fear

  1. This is when it sucks being your friend… keep reading, lol. It sucks because there is nothing we can do for you, nada… all we can do is offer unexperienced words of comfort, and offer up sacrafices of semi-alive hookers to the oprah gods. It sucks because I want to kick the shit out of crohns and feed it to my goat… it sucks because there’s nothing funny about it.

    I remember back in the beginning… what was that 20 years ago? Misdiagnonsense, the photos, me calling you everytime a new glutten free thing hit the shelves, lol. (I still look, no clue why *snort*) And I’m not sure that any of this has a point except on how much you have grown and learned and how you have spred awarness… I’m sure all of that is important. It matters. And I’m tottaly crediting you for the crohns’ awarness commercials that are now airing on our local stations.

    Now I’m going to shud up and go find some more coffee ’cause I’m pretty sure I’m not making sense.

    Loves you.

  2. binkythebomb

    Welcome to one of the harder lessons to learn: You Will Always Be Ill.

    Its a pain in both the figurative and literal arse, but it something to work on as you carry one with your life. There isn’t much advice that I can give to help other than “Learn how to relax your intestines when your Crohns is active”, but having a decent mental grounding is certainly a leg up on the issue.

    Good Days/Bad Days, take them as they come.

  3. Dear Sarah,
    I feel for you. Changed meds, can’t think, head fuzzy, need to sleep. Enough.
    I wanted to say that I want to give you a hug and tell you that it is okay to rage against fate sometimes. Life is frustrating for people who have no medical issues to deal with on a daily basis, let alone someone in shoes shaped like ours.
    However, while I am not audacious enough to tell you that everything is going to be better and perfect someday, I do believe and am confident that I can say that everything will be okay, and your struggles will be and have all been for a reason. From the small window into your life that you have offered me, I can say that you are one tough chick. While this is in no way compensation for suffering and pain, the bad days make the good so much better; the pain and suffering make those small moments (your daughters smile, the sun peeking through the trees in just the right way, the smell of the changing seasons and all the other moments that take your breath away.) worth more.
    I don’t know about you, but the good in my life (that remains untainted and really isn’t much other than reading and knitting) makes me feel even better. Nonetheless there are many days when reading and knitting just don’t do it for me. If you ever find yourself there, drop me a line… Maybe I can encourage a giggle or two. http://youtu.be/MssVTYMyXY8 http://youtu.be/DIkMUhK-PUY
    You will be im my thoughts, my dear. I sincerely hope it lets up soon.
    Best,
    xoxo -S.

  4. I’ve never seen a weight above 117 in my life and I’m 5’6. Currently at 93 pounds. Completely understand how you feel about not having a life if you never make yourself go anywhere. Its a daily struggle!

  5. S, they just started airing the commercials, I think I’ve only seen them for about a year… but who knows I don’t have cable! :)

    Em, I love you. Plain and Simple.

    Everyone else. :) <3

  6. You are one brave girl! I appreciate how you mentally have a grip of this awful disease. My cousin’s wife suffers from Crohn’s it is horrid how it interrupts life. Keep your chin up and know that you are a great example of strength.

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