Wednesday, May 8, 2013

I Think my Brain takes the Pain the Worst

I was going through one of the more painful aspects of my disease the other day (burst a rather large chocolate cyst) and I was forced into a lot of bed rest and (like it or not) time to reflect. I was a bit put out about it all because the exact day before the event was the best I had felt in a long time. Some new medication was apparently beginning to work and I was tempted to find hope for normalcy. I say tempted because I personally find it dangerous to get too attached to the idea. So, when the next day was a total train wreck, I was upset but only partially surprised.

So I sat (okay, laid down in the fetal position) and thought about my situation and the pain I found myself in. And all I could think of was that, physically speaking, the pain was not that bad. Now, let me clarify this. I am constantly between a 5 and an 11 on the pain scale. I've got tremors shooting down my leg that have routinely led me to contemplate sawing the thing off. When I walk, I feel like I have a machete jabbed into my abdomen that twists with every step (which, for some reason, no one else can see). My physical pain is a tremendous difficulty in my life and I'm not trying to say that it's not there. However, in comparison to my mental pain, it seems like a splinter in my finger at times.

That weekend was a great illustration of why. Despite trying to remove the temptation to find hope in feeling better, I was still devastated when I could not move the next night because of my throbbing body. Being stuck in bed, losing my hobbies, envying and losing my friends, being seen as a downer, that is what truly hurts. The mental pain is what truly gets to me. Fighting an uphill battle takes it out of me and when I slip down the slope it takes a huge toll on my fatigued mentality.

So when I tackle the pain, I do not merely focus on my swollen belly. I focus on my frustrations. My depressing moments. My envy of 'normal twenty-somethings'. My fragile hopes. Trying to groom up happiness and success wherever I find it. Because if I ever ignored the mental toll this disease takes, I would find myself in a deep and dangerous pit.

I think a lot of us focus a little too much on the physical aspects of diseases and disorders. Distracted by the physical limitations, we can ignore the mental ones that follow. And I think recognizing those problems before they become problematic is where you can succeed. For a great illustration, I recently read about how a family kept all their mother's favorite foods on the bottom shelf of the pantry, so that she could reach them from her wheelchair. This arrangement prevented her from having to constantly ask for help with food and gave her a greater enjoyment of independence.

What the handicap keeps you from that is what's frustrating, not the handicap in itself. Being in bed for a day(s) is not so bad, but I get angry when the situation is thrust upon me. So, instead, I try to work on my book, read, draw--do productive things that make me feel like it is convenient rather than a prison sentence. In that mental reconfiguration I cannot change the physical circumstances of my ridiculous body, but I can change my mental reaction. Yes, I would prefer to go hiking and work, but if I can't... I have to find a way to make it work. Otherwise, I am setting myself up for a loss of control and will be completely at the mercy of my disease. I can be miserable or happy. Those choices are still mine!


  1. I am sorry you have to go through this, Ash.I am hoping, somehow, there will be better days for you ahead.

  2. Wow, I can totally relate to your struggles. I was an extremely active woman, with a great career and deeply into fitness. Then an old back injury caused my back to collapse. I feel like I've been robbed of my whole life. I also have endometriosis, though clearly not as severe as yours, but you can only imagine how well endo and a lower back injury go together. Not good at all.

    I have a little blog about style and disability which I think might speak to you as your blog speaks to me.

    P.S. I'm also a college English teacher and I think you write well.

    1. Your post script made my day! I do love writing very much. I wish I had more time to put into the blog to make it flow better but I'm glad it's met your standards.

      I am so sorry you feel robbed, I completely understand. I love being active and feeling trapped in a body I cannot control is heartbreaking. I am hoping your doctor has you armed with muscle relaxants, I hate when muscle spasms from one thing cause another thing to spiral out of control!

      I will definitely check out the blog, thank you for your recommendation!

    2. I'm only just seeing your reply now... as I lie on heat because my endo is exacerbating my back injury and giving me sciatica.

      It warms my heart that you love to write. I do too and haven't had the chance to do much beyond journal writing for years. My blog is reminding me how much I love it and I'm hoping to do more with it in the future.

      In the meantime, here's a post in which I directly mention my endo. You can see in my body language an in my face what it was doing to me that day. It's also about the joy in teaching good students, of which I bet you are or were one.

  3. I love this post Ash ~ You are an inspiration! :)

  4. Wonderful post. Not only is it well written, it gives advice learned through the trials of experience. I will definitely be following your posts by e-mail. Keep writing, you are really good at it and I enjoy hearing your perspective.


  5. After an extremely differcult couple of days, also following a glimpse of normalcy, your post was exactly what I needed. I have been dealing with the mental side effects of my illness and fighting with the idea that it's ok to have those days...I'm leaning I don't always have to be positive and keep it all together, it's ok to fall apart every now and again. Your post helped with this even more. Thank you for putting your thoughts and feelings out here for others to read.

  6. I just found your blog while googleing depression, and I just want to say that I have learned a lot while reading it. While I have had the symptoms of endometriosis since my first period at age 11, I have only been diagnosed with it for a year, and during that year I have not learned as much about endometriosis as I have in the past hour reading your blog. Thank you for taking time out of your life to share your journey and knowledge - I truly appreciate it!


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About The BedRiddenHead

I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.

This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.

Thank you for stopping by, I wish you strength in your health and happiness.