Friday, October 25, 2013

THE EMOTIONAL PAIN OF A SPOONIE




I've talked a lot about the symptoms of what I have, which includes pain. My physical pain seems, at times, too hard to bear, and I find myself wishing for death. But there's another type of pain that people with chronic illnesses have to deal with that can be much worse than physical pain.

Emotional pain.

I used to be a girl in control of my emotions. Every emotion I experienced was at an appropriate time. I didn't understand how someone could be out of control with emotions. I saw a girl crying in public and I just thought, "Suck it up!" like it was that easy.

But look at me now. Everything gets the best of me. While I now may be out of control with my emotions, and at at times I cry for no apparent reason at all, they usually come with a hefty amount of thoughts, pain, and reasons behind them.

I'm sad. Sad that I don't have the body I used to. Sad that I can't go on a jog with my dogs anymore. Sad that I waste so much time sleeping because my physical pain is too much to bear. Sad that I might not ever get to enjoy something again. Sad that I might not ever experience motherhood.

I'm angry. Angry that I didn't know about Lyme disease earlier. Angry about every misdiagnosis. Angry that every healthcare professional I went to told me that I'm normal and there is nothing wrong with me. Angry that I wasted tens of thousands of dollars on doctor's visits, treatment that was useless, and for numerous tests. Angry that I got stuck with so many needles for blood tests. Angry that insurance won't cover anything to treat what I have, but they'll cover horrible medications for things like acne and other non-life-threatening issues. Angry at others for giving me false hope. Angry at every person that is unaware of the complications of living a life with a chronic disease.

I'm scared. Scared that I won't ever be able to hike a mountain again. Scared that I won't be able to go on another road trip. Scared that I'll never be able to advance my business. Scared that I won't be able to have children. Scared that if I DO have children, that I won't be able to take care of them. Scared that I won't be able to cook dinner for myself ever again. Scared of every step that I take, because I know how much it costs me. Scared of planning things, since I know that I probably won't be able to go through with them. Scared of an unknown prognosis...that I might get worse, get co-infections, die.

I'm jealous. Jealous of every girl that announces her pregnancy. Jealous of every blogger posting a new travel post. Jealous of the cyclist, the marathon runner, the swimmer, the climber, the crossfitter. Jealous of every photography business. Jealous of every decorated and photo-adorned wall.

I'm ashamed. Ashamed of not caring for and loving my husband the way he should be. Ashamed of not being able to walk my dogs. Ashamed of not doing the laundry. Ashamed of my grocery bill. Ashamed of asking others to care for me. Ashamed that I long for the relief of death more than I long for the burden of life.

I'm tired. Tired of not being able to do anything. Tired of treatments. Tired of trying. Tired of talking about my condition (even though I want to at the same time). Tired of trying to explain what it's like to have a chronic illness. Tired of all this pain. Tired of being tired.

These emotions are so painful. I sometimes think that the Lord doesn't think I'd be a good parent, and that's why I'm cursed with all of these ailments - so I don't have a baby. I sometimes think that I'm being punished for something I did in the past, or even something I'm doing now. (Does the Lord need me to come to Him more and I'm just not? If I come to Him more, will he heal me?) I sometimes think that I'm not good at anything, and that's why I was chosen to bear these burdens (i.e., it doesn't matter if I can't do anything since I don't contribute to society anyway). I sometimes think that it was all my fault. My fault for listening to those doctors and not doing enough research on my own. My fault that I have a headache, since I caved and had processed sugar that one time.

But with every wave of these negative emotions and ways of thinking comes positivity, as well. I must express these feelings so I have room for good ones. Purging, in this case, is good. Because after the negativity, the good starts to roll in and I learn so much about myself and about those who love me.

I learn that I'm not selfish. I care about others too much to let them down too many times, especially enough to not willingly welcome death at my own hand.

I learn that I'm a fighter. I've lived for years with these symptoms. I can fight longer.

I learn that others really love me.

I learn that God thinks I'm capable of overpowering these worldly things.

I learn that my husband would do anything for me.

I learn that I have something to give to the world. Knowledge. Compassion. Love. Hugs.

And I learn how grateful I am and blessed I am, despite everything. Thank God I wanted great danes, since they don't need much exercise and just sleep all day anyway. Thank God that I traveled so much at the beginning of my life instead of waiting. Thank God that I have a caring husband who knew how to take care of someone physically before he even met me. Thank God I have parents who are willing to help me financially. Thank God my family doesn't want me to dwell on the bad things, and makes me play games with them instead. Thank God I have people who will pray for me and send me encouraging notes in the mail. Thank God I don't have stairs in my house right now. Thank God the mailbox is right outside my door. Thank God I taught my dogs well enough that they won't pull on a leash. Thank God for Hulu and Netflix.

And oh, there's so much more.

I may have way too much emotional pain, but with it comes drive and determination to get better, to hope for the future, and to be happy. One day I'll be happy again, and it won't just be because I'm watching an episode of Parks and Recreation.

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7 comments:

  1. Hi Bailey!
    My name is Sarah and I'm stoppin' by from Texas Women Bloggers.
    It is so very nice to meet you.
    I loved the honesty and rawness of your post. It was real.
    I don't think I can completely understand your illness or what pains you go through day in and day out, but I'm glad you have a higher being to turn to. I'm glad He's showing you these truths in your life that you are a fighter and you have a great support around you.
    I pray that your days of pain will be mild and that you'll push through b/c you are a fighter. :)
    I also just wanted to leave you with this:
    2 Corinthians 1:3-4
    New International Version (NIV)
    Praise to the God of All Comfort
    2 Corinthians 1:3-4
    "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God."
    With your story, you can be of a great comfort to someone who maybe going through the same thing. :)

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  2. So wish I could give you a hug! I don't really know what to say but thank you for sharing that can't be easy.

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  3. I'm sitting here at my computer, so close to losing it and bawling my eyes out. I have severe ulcerative colitis. While its something I talk about every now and then, I've never, ever had the courage to say aloud, let alone blog about the emotions and thoughts and self doubts that plague me on a daily basis. My chronic/immune disease is vastly different from yours, but in some ways so similar. Because of it, I am unlikely to ever have children, and even if I did, I too, am terrified of not being able to care for them the way I would want. I totally get the scared and jealous feelings and just being tired. Tired all the time and of everything. Everyday is a new challenge, especially with the busy holiday season coming and my self imposed goals for my handmade shop. Some days I give up and just go to bed, and I've come to learn thats not always a bad thing.
    Daily I rely on Psalms 94:19 When my anxious inner thoughts become overwhelming, your comfort encourages me. ( International Standard Version)
    And absolutely Thank God for Hulu and Netflix! :) I'm here for ya girl if you need to vent/chat or someone to watch netfix with during the day :)

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  4. Sweet Bailey. I just read this. Girl, my heart aches for you...and so understands how you have felt. I've lived with lupus for a long time, and it.is.hard....the emotional so much more than the physical at times. I understood every feeling you expressed above, you are so brave to say those things when many of us feel them. I am praying for you now. I also wanted to say that you have no idea how much I LOVE your travel posts...your photography is stunning! You inspire me darlin!! Praying for you...love KAtie

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  5. Hi Bailey, we don't know each other, I stumbled across your blog and this post was the first thing I saw. I'm so sorry to hear about what you're going through. But if it means anything, I just want you to know that the strength that you had to share this has really inspired me. I'm currently enduring a miscarriage, it's our first ever pregnancy, and the physical pain that it's bringing me on top of the emotional pain seems almost unbearable, but the one thing I've held on to is that God is strong in my weakness. And although I may not understand why these things happen, I do know that our Father has laid out every detail for our lives. I don't know what kind of pain you're having to endure right now, but I'm going to pray that the Lord brings you healing, and that you seek him in your darkest days. Go through the emotions. The anger, the hurt, and the sadness. Tears bring healing, and just know that you are supported in this. XO

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  6. I so understand your feelings. Everyone of them. I'm a Christian mom with chronic tick born diseases and I struggle with the same thoughts and emotions. I'm glad you are able to see the good and I wish you better health and healing.

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  7. I just found your blog and so, of course, I don't know what you know of Lyme and diet and all that. I am from the northeast (NH); my mom, nephew and possibly my sister all have lyme. My mother changed her diet radically, and is in recovery. If you would like to connect over this, please connect. My daughter and I are both strictly gluten and dairy free and I am 100% grain free. We have not been diagnosed with anything like Lyme's, but we had many, health issues. Please know that you can feel good again. My heart goes out to you. take care, Kerry

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