Facing reality

Before I was diagnosed with ankylosing spondylitis I heard people describing it as a life sentence. In reality I had no idea what that meant, but it went without saying that it couldn’t be good. I have lived with this label now for 3 years, but suffered for much longer. At first I was glad to have a diagnosis, an explanation for the crippling symptoms that I experienced, and still experience, every minute, of every hour, of every day. Now, I am living in the reality of that life sentence. 

 

This cruel and chronic disease chips away at you so that, over time, it takes complete control of you; and not only your life, but also those around you. I can step out of my front door and walk down my street, and nobody knows that my neck hurts and my SI joint is screaming at me every time I turn a corner. I can post a Facebook photo, and nobody knows that at that moment my lower back is aching because my hips are 3 inches out. I can sit in a coffee shop and drink skinny lattés, and turn myself into a fictional character for a couple of hours, while all these things hurt at the same time, and nobody knows. I can escape; for 2 hours I am disease free, I can eat what I want, do whatever sports I want, I don’t take any medications or inject myself with obscenely expensive drugs… I am in control.

 

But then I stand up, and remember I can’t, shouldn’t have sat there for that long. I am back in the real world where it controls me. I try not to let it, but it is slowly taking away every little piece of me that it can. However, there are some things that I won’t let it get its claws into, because those things are more precious to me than anything else in the world, no matter how much it hurts. There are people who will always love me for who I am.

 

Writing is therapeutic, cathartic, escapism, and mine. It is something that it will NEVER take away from me.

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3 thoughts on “Facing reality

  1. tlohuis

    OMG, I just wrote a message to you and it said this message could not be posted. I just wanted to say that I understand everything you wrote here. I don’t know much about this particular disease, but I do suffer from several invisible chronic illnesses and pain, myself. Sorry, that you, too, have to belong to this club of invisible chronic illnesses and pain. There are a lot of us here that walk this journey together. You seem to face reality a lot better than I do. You are very inspirational and I look forward to following your blog and thank you for the “follow” on my blog. Nice to meet you. Have a great night, day, night or whatever it is, wherever you are.
    Peace,
    Tammy 🙂
    I hope this message goes through this time. 🙂

    Reply
    1. llindley72 Post author

      Thank you Tammy, got it this time & nice to meet you too!
      I take comfort in your description of our suffering as ‘invisible’. I look like a normal healthy person to the outside world, which if I’m truly honest is the ONLY thing I can be grateful for with my disease. I don’t remember what it is like to be pain free or comfortable, but I joke about it as a coping mechanism. For example, my physio will ask ‘are you comfortable’, when he’s just placed 4 large icepacks under my back and neck! My response… ‘ahh yes comfortable, no, not since 2008!’ It controls me in so many ways, but I like your idea that I’m part of a club, that makes me feel like an exclusive member of something interesting!
      I hope you enjoy my blog, I will look forward to following yours. Take care. LL

      Reply
      1. tlohuis

        comfortable and pain free? what’s that? 4 large ice packs under my back, right now, sounds great. My neck, back and shoulders along with many other body parts are hurting like hell. It hurts to sit, it hurts to lay down, it hurts to move, it hurts to stand, it doesn’t matter what I do, it hurts. Welcome to the club and you are now an official exclusive member. LOL not sure that’s really so funny, but if we don’t laugh, we’ll cry, so tonight I’m laughing. It looks like I will enjoy your blog and I’ll be around to read some more soon. since I’ve not been on for several days, I’m once, again, trying to get caught up on all my notifications, once that’s done I’ll be back. Have a great day. Take care.
        Peace,
        Wild Thang aka Tammy 🙂

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