Down but not out

No one but my husband and parents know how sick I really am. I’m grateful to be able to see, to type this today, and to have family members to lean on. If I didn’t have people to care for my needs, I know I would be in a nursing facility. There are worse things than that, but I’d still like to be able to share about the harder times without my positivity being called into question by “friends.” No, I’m not feeling particularly positive lately, and I’m not going to beat myself up about it. There is enough shame that comes with illness and giving myself a guilt trip will only make me worse. We all go through phases with long-term illness; even the most positive upbeat people get beaten down sometimes. If you have read my blog, you know I try to impart hope and raise others’ spirits. The last couple posts have been a little different for a reason. For right now, I’m trying to raise my own spirits. If you are also feeling this way, it will get better. You will feel stronger. You are doing the best you can and what you are feeling right now is ok.

Peace and love.


About abodyofhope

I do not know why it is that we must wade through tragic circumstances to find truth. We nearly drown! But under the water, there are pearls. I hope in writing this blog, more will come to the surface. Over the past 11 years living with chronic pain, patient advocacy has affected my life through so many remarkable young people, women and men: SURVIVORS. These individuals are HOPE personified. I wish to honor them in the same spirit they have encouraged me to press on. Four years ago, I became bed-bound from a variety of chronic illnesses after a procedure meant to help the pain condition I had been managing for several years- went bust #BIGTIME. In the last 4 years, my entire life has changed. I have changed, but I am still striving to live my best life possible. Along with sharing inspiring pieces, medical/holistic research, and awareness articles, this blog is also an attempt to put my own pieces back together. Welcome to A Body of Hope, and thank you for visiting. [Complex Regional Pain Syndrome/ RSD, Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, Chronic Intractable Migraine, Cluster headache, Trigeminal Neuralgia, Occipital Neuralgia, Hypersensitivity to Sound & Light, Fibromyalgia, Cerebrospinal Fluid Imbalance......blah, blah, blah] >>> P.S. My headgear is protective for pain. I just rock it hard.

Posted on April 17, 2015, in Being Myself and tagged , , , , , , , , . Bookmark the permalink. 19 Comments.

  1. Bravo! Well said! You speak volumes with your words and your example.

    Liked by 1 person

    • Thank you, Jane. I’ve been unsure if I should write anything lately since I don’t have a bouncy upbeat message. I can’t keep waiting for things to improve- the time is now. You are such a great example of telling your story, and not being afraid to share the dark moments as well. Thank you for your example and for being an understanding friend. xo


  2. awww sweetie you are still my hero!! Hang in there and keep taking baby steps.

    Liked by 1 person

  3. You’re one of my favorite people I haven’t met yet and I love that you bring exactly how things feel right now here every time. I’m grateful for the love in my life, too, my girlfriend and my friends. Pain and illness are not punishments from the universe, and every day you are here and continue writing and speaking (and not writing and not speaking, either way, just by being here you do this), you impart some wisdom and love that the universe hasn’t yet seen. I’m grateful I’ve gotten to see that, too.

    Liked by 2 people

    • Mark,
      Thank you for being a good friend and for your kind message. It can be awkward to publish something so different for me, but having friends like you here with open arms is a true gift. I agree that pain and illness are not punishments, so well-said! We don’t “deserve” them, but we can learn from them. Just as we can learn from feeling down. God bless you and your family.

      Liked by 2 people

  4. I understand how what you describe feels and I’m sending you positive energy so you can feel like your usual positive self again soon.


  5. I always love how you write in such a real and honest way. I think it is so hard to be chronically ill & have to cope with all the emotions that come with it. I think we can feel pressure as Christians to get rid of the ‘bad’ emotions and feel we should only have ‘good’ emotions. I no longer think this is true. I think God expresses very type of emotion, as did Jesus, and encourages us to do the same. I don’t think he fears them in the way we can. I think He is alongside us in all of them regardless of how crazy and mixed up they are. Sending you love and thanks for your writing


  6. Hi There, I am right there with you.Love looking at your stuff. Trying to set up my own wordpress; seems daunting, but I am no quitter 🙂 Take Care!

    Liked by 1 person

  7. Having to endure so much, the fact that you still write a message of hope for others – well that is a testament to your strength and compassion.

    The important thing is that you do have others in your life that you can lean on. You are not alone and there are others that have your best interest in mind. You also know there are others here on WordPress that understand you and support you wholeheartedly.

    So take care and be well. Sending positive vibes your way!

    Liked by 1 person

    • You are so kind to say so, Vic. I’ve been doubting my choice to share how I’ve been feeling lately, but your words of encouragement and support show that it’s ok to share the spectrum of feelings that come with this complex life. You are a good example to me of sharing in an honest open way on your blog.
      Thank you for your comment. Have a blessed day.

      Liked by 1 person

  8. Thinking of you today. I wish I had magic words to make these difficult pain days more manageable for you. You are an inspiration to me and I so appreciate your honesty when you write. I am honored that you are willing to share what you are going through. Sending a gentle hug and prayers your way.

    Liked by 1 person

  9. If there were a “love” click I would click it a thousand times for this post. I realized that when I was feeling the sickest over the last few months I had to let my sickness to show in order to allow people to help me. And I’ve posted sometimes when I’ve felt the worst and when I’ve been filled with negativity. Now that I am a little better one day I will look back at those posts and see how far I’ve come. We put so much pressure on ourselves to be “positive”. Imagine telling someone who is in the middle of a hurricane to “think positive”. Lyme disease is a game of survival. I’m glad you allowed yourself to post this and speak your truth. I think every drop of truth we speak aids in our healing. I hope you are feeling better.

    Liked by 1 person

    • I’m sorry you have been as ill as you have been. Yes, I think it takes more strength to show vulnerability than to put on a brave face to those around us. It might be more difficult to begin to see ourselves as something other than bright and positive. But, you are so right: We would never expect a person in the midst of a hurricane to be positive all the time.
      I’m glad to hear you are starting to find more health stability. I hope you continue on that path.
      Thank you for your thoughtful comment.

      Liked by 1 person

  10. I love when you write just the way things are. Sometimes pointing people to hope is letting them know they are not alone. And there is nothing more hopeful than someone who keeps going despite how hard it gets. Saying a prayer for you today.

    Liked by 1 person

    • I really appreciate you saying that. I think we all struggle with sharing the darker days, and wish every cloud had the silver lining to speak of. Thank you for your prayer, and for always being an encouragement to others around you xo

      Liked by 1 person

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