Update… Aborted. Again.

I’ve been trying to write an update for so long. It’s been 5 months since my last one. There’s been so much that I wanted to document, that it started to feel like a Herculean task to catch up and my symptoms have been such a rollercoaster, that I never seem to find an opportunity. When I have some respite, I cook, bathe, deal with insurance and appointments, tackle laundry, play with my dogs, sort through finances etc. Aaannd… I just hit a wall. Just like that. As I typed, I could feel my brain clogging up. I picture all the little ATP molecules grimacing, gasping and dragging their feet like the characters at the end of Stephen King’s story, The Long Walk, dragging themselves along until collapse is inevitable. It’s a shocking feeling. Mentally, I was really clear for about an hour this morning. Felt like I could write. Dreamed up grand plans for my day (make granola! call a family member! blog post!). I answered a few emails, talked to my husband a bit and then wrote this… And it’s gone.

My neurological symptoms are horrific. “Brain fog” is the best of it. I’d take lack of concentration, not being able to find words, memory problems any day over what I’ve been experiencing this year. It feels like physically–physiologically–my brain grinds to a halt. My eyelids get heavy, my vision gets blurry, my ears roar, I start slurring. As I’m writing this, it’s getting worse and there’s no pushing through. My body feels okay, my stiffness, weakness and pain levels are manageable this morning, but I can’t push through this neuro stuff. Even if my body feels capable of going to the park, my brain insists on being in bed with ear plugs and eye shades. I can’t even watch dull tv or listen to a meditation. It’s incredibly frustrating and quite alarming. And, in a clinical way, I am fascinated by the trajectory of my symptoms over the past four years.

Year 1 was horrific viral, malarial, drenching sweat, nighttime hell and constant chills. That ended for the most part in Year 2 and became predominately “nightly flu” and pain, pain and more pain. Year 3 was the best of times and the worst of times: a bedbound, suicidal winter (when I finally got the permanent ME/CFS sore throat) turned into a much more stable spring and summer after my pain eased up. Year 4 started in a deep, reactive crash and became the year of crippling neurological symptoms. Year 5 (which started at the beginning of this month) so far is all over the place. My main focus is to work on the symptoms that have been with me throughout all of these years: sleep dysfunction, headaches, hypotension and infections. Plus, social contact would be good.

I have to power down now. The long-awaited update will come soon, I hope. I have so much to say.


6 thoughts on “Update… Aborted. Again.

  1. Nadine G says:

    I have been dealing with this “condition” for 20+ years. Your description of the year-by-year changes is so very accurate. Of course, we all fall into some sort of weird type of normalcy eventually, (which would NEVER be considered normal by anyone else’s standards) but the yearly changes happen for awhile. For me, much like you, the beginning was nightsweats, crazy dreams, drenched sheets, and attempts to maybe leave the house,only to get lost INSIDE ac store, or driving 3 blocks to the post office. Year Two was the Year of Pain, and on it goes. I admire your ability to get your message, as limited as you brain may cause it tobe, out to the rest of us. You are not alone.

    Liked by 1 person

    • Thank you so much for this comment, Nadine, and the compliment. I’m sorry I’m so behind in answering. I also hate that you went through that hell. How scary those years were. X


  2. currankentucky says:

    Thinking of you… xx

    Liked by 1 person

  3. kneillbc says:

    Hang in there! Mine has gotten MUCH worse lately- although I think it has more to do with not eating, than anything else. You cant take ranitidine, can you? I helped me SO much. But, I only have MCAS fog, not ME fog as well. I know how frustrating it is when you have no idea what the say will be like.

    Hang in there. Thinking of you!

    Liked by 1 person

    • Zantac helps your brain problems, Karen? That’s interesting! I take Zantac once a week for my IgG infusion, but I wouldn’t know if it helped the fog because I take it with Prednisone and Benadryl, which both knock me out. Thanks for the support, my friend. x


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