Reflections

I began having symptoms in the spring of 2005, and since then I have not gone a single day without pain. It’s become such a normal experience for me. It’s become a part of me.

When I first started feeling pain I thought it was the worst pain I would ever feel. I couldn’t imagine ever hurting any more.

After several more months and no improvement and only steady decline, I wished more than anything that I would only hurt as much as in the beginning.

Whenever I thought it couldn’t possible yet worse, it always did. No matter what I did or what I tried or who prayed for me or anything. It always got worse. This has been going on for a very long time.

It’s astounding what one person can get used to.

I am finally beginning to feel like I’ve stopped sliding down a slippery slope. I feel like I am finally beginning to climb my way back up. And I know this will be a much harder and longer process than falling down it.

I remember many times when I would be in so much pain and would get so upset I’d yell, “I give up! I give up! I can’t do this anymore”

It would make me laugh afterwards. Because of course I cant just “give up” R.A.

My neck used to swell up and get stuck in one position. If you pull your chin in and try to give yourself a double chin you’ll understand what I mean. It would get stuck like that for hours on end. Sometimes all day. It was almost impossible to swallow, and I almost chocked a few times. The absurdity of the situation was never lost on me.

I’ve laughed out loud many a time over my situation. It’s always better than crying. I am a very upbeat person usually. But sometimes I felt like I didn’t have a choice.

Being anything other than upbeat makes people unconfortable. NObody likes to hear someone complain(even if they are in alot of pain)

I remember that after my mother died when I was fourteen I was crying, and my father told us four kids that crying didn’t help anything. That anytime I felt like crying, I should just get mad instead. Well, even at fourteen I knew that was bad advice, but I did agree that crying never helped anything. It only made me feel weak.

Another lesson taught us soon after was the “life goes on- turn the page” lesson. My father was not himself after mom’s death. He became a completely different person. He could not stand being alone. He remarried very quickly to a very bad woman. Yes, my life was the overly cliched Cinderella-evil-step-mother story. Except without the prince charming and fancy shoes.

When she started getting rid of all of our mother’s things, we of course were very upset. My dad said it was time to move on. To turn the page. I was very bitter about that. I knew it was a very bad thing to say to a child within a few months of her mother’s death, BUT it still stuck with me.

So I’ve never been one to dwell too long on my set backs. I push them to the back of my mind, and think about other things. Because life does go on.

And no one wants to hear you complain.

Everyone seems to have this romanticized vision of how sick people should act.

1) They should never feel sorry for themselves. Of course this is perfectly normal and is part of what makes them human. No matter. They should never ever be caught being upset about their circumstances. And under NO circumstances talk about being upset.

2) They should always be an inspiration to those around them. People like to mention that “they know so-and-so who has it so hard, but never ever complains” They should comfort those around them with their inability to help. Example: “Don’t feel bad! I’m just dandy!”

3) Seriously, under no condition are they ever to be angry! And if they are angry, they should never show it! Never talk about it. Just bottle that rage up and leave other people out of it. Even though any counselor will tell them that anger is a perfectly normal reaction to a painful chronic illness, it will make other people look down upon them.

People are not like this. No one is! Nobody makes a choice to make the best of things, and then NEVER think anything different. If there is, I would love to meet them. They must be some sort of christ like superperson.

I shouldn’t write things like this. I know it will annoy people, but it’s WHAT I FEEL.

And I’m not wrong for that. And if I can’t get it out here, I wont get it out anywhere.

I’m not sure this post will make any sense. But it helps to get things out.

And if you stop and think about it, it’s all very true. And absurdly funny.

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8 Responses

  1. Hi,
    I am so glad you wrote this post. I feel EXACTLY THE SAME WAY. I don’t think this will annoy people, well, maybe the ones that don’t have a clue what you’re talking about. But then, why would they be reading a blog about RA? LOL. I really appreciate you sharing your feelings hun. I can relate, and I live the pain each day and wonder how I’m going to make it through. But we do. You can’t get away from your body, and I think that is what causes my depression. I’m having a few good days right now and I try to remember each moment to carry it with me during the bad times.
    Blessings to you hun, I’ll keep you in my prayers for a break in the pain cycle
    soft hugs
    Michelle

  2. I just found your blog, and I too have RA. I wanted to tell you I understand what you are going through and that I agree completely with you. If they do say they never have those thoughts, they are lying.

  3. it’s so true that the pain you feel at the beginning was once a pain that you thought was the worst pain you ever felt – and then the RA progresses and you’re left thinking “what gives??”

    I think you’re an amazing person, and you deal with it all and bounce back so positively – you’re such an inspiration!

    thanks for sharing! ❤

  4. Michelle,
    Thanks for the comment! I’ve even noticed the romanticized vision of sick people on other blogs about illnesses. It got to the point where I felt like I shouldnt be writing what i felt, and that defeats the whole purpose of this blog 🙂 Im glad their are other people who feel the same way

    Likewhoa,
    Thank you. I dont usually feel like an amazing person. But I appreciate the sentiment 🙂

  5. Thanks Ashley for your comment on my page http://ohboy-boys.blogspot.com/. It is good know that I am not alone.

    I have started a new group for moms living with RA at twitter.com. Even if the mom part does not appy to you (I wasn’t sure), we would still like you to join.

    If you are interested, we are located at http://www.twittermoms.com/group/momswithrheumatoidarthritis. Please come and join us. We are here to support each other and share experiences and resources.

    Please note that you will need to join twitter.com to be a part of the RA group. Twitter was started by Megan Calhoun for moms to connect on various issues.

  6. Hi – stumbled across your blog awhile ago but just haven’t posted.

    I couldn’t agree more with your observations. I think people believe that going through anything “hard,” especially a chronic illness, should make a person stronger or teach them some wonderful lesson about life. And I’m not saying that is completely false. I will admit that being diagnosed with RA has given me a better perspective on life.

    But it’s unrealistic for people to think that every day is going to be a picnic or that we never get sad or angry about it. I think it’s completely natural to feel negative emotions when dealing with such a huge deal. I avoided talking about RA with other people for exactly this reason. But recently, I’ve been more open about it, because I don’t think we should have to hide the way we feel.

    Anyway, just wanted to say I know how you feel, and best wishes to you.

  7. Thank you Rachel! I almost didnt write anything because being open and honest about the negative emotions associated with R.A. is usually frowned upon.

    Im glad I did. Several people had written me and said they feel the same 🙂

  8. Wow, I’m stunned…this is the first time I have ever seen anyone come out and list the exact 3 things I struggle with.

    Don’t ever think you will annoy someone who has RA with writing these kinds of things because you will never have any idea how much you just validated my feelings!

    Thank you!

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