My Brain is Lost: Brain Fog…Again

I have been a zombie since the holidays. I feel like my brain slipped out among the Christmas gift wrap, and I’m still looking for it. Thankfully today I can string a few words together, but it’s still not good. The poster above is my great accomplishment for today. I hope it makes you smile.

I’ve been asked by my doctors in the past why I don’t like to take “enough” pain medication to really get my pain under control. But, it’s exactly this glazed over, cloudy-headed feeling I’m trying to avoid. 

There’s a fine line between managing pain and taking so much medication that my brain absolutely can’t function. But, it means that my pain will always be on top of me. It’s something I accepted a long time ago. 

The truth is, I need my mind. I need to have conversations. I need to write. I need to connect with people I care for. I need to be creative. I may be in too much pain to move, but I need my mind to continue being me. 

Because of severe Postural Orthostatic Tachycardia Syndrome, low blood pressure, Chronic Fatigue, and the Complex Regional Pain Syndrome/RSD now attacking my brain, it feels as though my brain cells go to sleep for long periods. It’s the settling in of a brain fog cloud that curls up in your head and decides it’s not leaving. 

So I fight. I take my vitamins. I do deep breathing. I struggle to have conversations even though most of the time the other person has to guess what on earth I’m talking about. Words won’t come. I fight by playing word games on my phone. I fight by trying to write articles that never make it to the blog. I fight by moving more. By moving less. By eating better. By drinking more water. Take less medication. Take more again. By doing something creative. I try to learn something new…if I could only think, think, think! 

Brain Fog always causes me depression. Maybe it’s because my neurons aren’t firing. Yes, that makes sense of course. Or maybe it’s the sheer frustration of the thing. 

I envision the CRPS/RSD eating away at my brain. Just like it has atrophied my leg. Just like it has bitten a large chunk out of my left arm. I should stop envisioning that image, but that’s exactly what it feels like. Parts of me are slipping away, no matter what I try to do. 

With every bad pain flare that attacks my head, I feel a little less like myself. Am I fading or becoming someone new? 

Are we the zombies in the zombie apocalypse? The brain-fogged following the bright quick-witted around for a great conversation? It’s not brains we’re drooling for… It’s stimulation, laughter, the kindness of another person, compassion, something interesting to wake the atrophied pieces of our pain-addled minds. 

That’s not a kind depiction of myself, but it feels that way when my body and mind are playing tug of war between flight and fight. Even though the meds may not have done it, I suppose my mind has flown from the suffering on its own. Maybe my brain isn’t lost after all. Maybe she has simply run away. 

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 15 years living with chronic pain, patient advocacy has had a powerful effect on my life through meeting so many remarkable teens, 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. Eight years ago, I became bed-bound from a variety of secondary chronic illnesses. A procedure meant to help the pain condition I had been managing for several years- went bust #BIGTIME. Over the 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 about spiritual wellness and finding quality of life inside of ongoing illness, I also share health research, awareness information, poetry, memes, art, and 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, Fibro, CFS/ME, Cerebrospinal Fluid Imbalance......blah, blah, blah] >>> P.S. My headgear is protective for pain. I just rock it hard ;)

Posted on January 7, 2018, in Uncategorized. Bookmark the permalink. 19 Comments.

  1. awww sweetie you are way to courageous for your brain to leave you!! You have to much to give to so many people. You may not always be present at the table but you are present in so many peoples lives. Keep fighting, I know how hard it can be for you but you are worth it. We all love you so much!

    Liked by 1 person

  2. Mary, I so admire your strength and perseverance amidst pain and suffering. Despite the shattering of normalcy and the tumult of your body, your spirit is strong. And youโ€™re so articulate, as you describe the disorders and debilitation you suffer. Even through the frustration, itโ€™s your โ€œfightโ€ that shines through! Please know how effective you and your blog are in raising awareness of chronic illness and, too, in encouraging others who also suffer. Youโ€™re an example to all!

    Liked by 1 person

  3. Hi sweet Mary. I agree with both comments above, you are amazing. Period. When your brain is off for the day like some Looney tunes cartoons showing a “back in x minutes” sign, remember that you the strong fighter and amazing woman come back. You are not diminished in who you are even though it feels like it physically. When you come back to life, we all recognize you and a 100% of your wittyness, creativity, free spiritness and everything in between!
    Thanks for the image you made, made me laugh. And good news is it’s totally been debunked that we only use 10% of our brains. We use a hundred percent even if not at full functionality, not a single area is leftdark on MRI maps, even people who had parts taken out. So suck on that brain fog, the fog may hide the sun but it never disappears behind it. Only makes it more bright when we see it again.
    Oh and I totally agree that pain killers that numb your thinking too much is no good all the time. Had to fight one neurologist about that one once, but her own lack of personality probably explained why she didn’t seem to think being brain fogged from meds was such a big deal lol So you keep where you are comfortable and alive. Even if you post less than stellar blogs we love them and can understand you. Let us talk your language when you are too tired but still need to communicate. I do so with my hubby when I lose my ability to speak, I write or gesture. He has the brain power to put it together after all ๐Ÿ‘ซ๐Ÿ’ก
    Love and hugs

    Liked by 1 person

  4. Thank you for being so open & honest in your journey! I have FM & had a family gathering yesterday & brain fog came drifting in, I couldnโ€™t find my words let alone get them out!
    Such is my journey with Chronic illness as you can understand.

    Drop over & have a cup of tea, coffee or hot chocolate with a delightful piece of deliciousness with me soon.

    Liked by 1 person

    • Hi Jennifer! I’m very sorry to hear that your family function was hijacked by brain fog ๐Ÿ˜ฉ It can really be maddening. Sometimes all we can do is smile when we can’t speak the local language ๐Ÿ™ƒ
      Thank you for dropping by, and I will take you up on your lovely invite!โ˜บ


  5. You have been nominated for the mystery blogger by me๐Ÿ˜Š

    Liked by 1 person

  6. Mary, your post touches on something I’ve been struggling with myself this past year. Your eloquent, compassionate posts, are what inspired me this week to work on my first blog post of 2018. I have not written a post since September. Some of it is because of surgery issues, but it has been a struggle putting thoughts on paper. And now, I’m also determined to finish the draft of my WIP manuscript. I’m sending you a gentle hug and all my support โค (I loved the poster, it did make me smile ๐Ÿ™‚ )

    Liked by 1 person

  7. Hi love, that moved me so much! I want to give you a (Gentle hug). I feel a lot like that, with my situation of lack of sleep. You inspired me to write a poem. Would you like me to add it here? it nearly fills an A4 page (Don’t want to hog your page). Biggest luv and admiration. I’m sitting right there with you, and I agree with the person who said you’re far too smart for your brain to leave you. Smart, warm, funny, kind and courageous. I’m so pleased we *met* at twitter. **hugs** Shar.


    • Hi Shar!! My Twitter friend ๐Ÿ™‚ I’m so happy we met too!
      Oh yes, PLEASE do share your poem if and when at any time you feel able. I would love so much to read it, and for everyone to have the opportunity to read a poem by a talented writer such as yourself.
      I hope you find your brain again, too ๐Ÿ’™ Thank you for the hugs, and sending a big one back across the miles.

      Liked by 1 person

      • Hi Mary, aw bless your heart. I am glad that my mind is in a (somehow?) more positive place than it used to be. I have (even recently) had quite a temper and caused much damage to my home, but I suppose on such little sleep and not a quiet bedroom, it was bound to happen :-/ Thank you so much for lovely compliment โค I do have one to post right now, not such a positive so I may (deciding as I type) hold back on it and post the one I mentioned to you. Thank you for hug back โค (I will find emoticons on desktop, just too late for it now at 01;14 -yawn). Regarding poetry, I have lots, it goes back years, and I had opportunity in 2015 to read some out at a festival here in Pocahontas country, at a riverside bar /restaurant with function rooms above. I was triggered (tell you more at DM on twitter about that) and my heart beat was so rapid I thought I was going to have a full blown panic attack, but I put my head down in to my poem, and glanced at different audience members in the small room (large living room size). Outside I was triggered as I walked around the market stalls, all pretty things, and I walked away texting Samaritans. Hard times. I look forward to moving to a rural area where I don't have to face that again. Ever. Love ya sweetie. x

        Liked by 1 person

  8. Brain fog with CRPS and all the meds is the worst! Itโ€™s so hard to manage things we all take for granted. Keep fighting! Wishing you better, pain-free, clear mind days ahead!


  9. As always so well written and totally describes so many of us.. my pain doctor is decreasing my pain pump meds 10% every 2 weeks. He doesnโ€™t like me on the pump because of the surgery I had in my bad for a granuloma! So now he wants to increased my oral pain meds because my pain is out of control and I totally get everything u said๐Ÿ˜ข if I increase my meds I am a zombie ( I am anyway!) thanks for sharing my sweet friend


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