The holiday season is deep upon us, and the solstice has just passed meaning, the sun and accompanying warmth are slowly on their way back.
I try to remember that from the depths of my winter flare.
Memories of last year exist in a haze. But still I feel a need to quantify my experiences.
Last year I was in a daze by this time, major brain fog, unavoidable nap attacks, sudden bouts of complete immobility, multiple days long migraines, and often extreme pain in my joints left me half conscious and very out of contact with the rest of the world.
This year I have cut out most grains and dairy from my diet and started a food log to track what I eat and figure out which things I’m reacting to most. I am learning to try and stay calm and even since I have reactions to my own body’s adrenaline. I joke that I am the world’s most delicate hulk, I wouldn’t like it when I’m angry (or any other strong emotion for that matter)
I have also added kratom, turmeric, l-theanine, and quercetin, to my regular treatments. As well as getting a pill sorter so that I am more able to keep up with my otc antihistamines, long term antacids, vitamins, and supplements that help with my acute asthma, depression, anxiety, and MCAS.
So this year my flare feels quite different, maybe it is the medicine, or maybe it is a coincidence, I don’t know.
This year there have been quite a lot more joint partial dislocation, or maybe I am just more aware of it happening. This year my brain fog has shifted from slower processing and confusion, to being extremely forgetful. I have difficulty building any short term memories, and seem to also have difficulty accessing longer term memories. I have incorporated tools, like my kindles and Evernote app, to help me reduce my frustration with my low level internal memory.
My fatigue has also changed a bit, it’s less often that I get the sort of deep fatigue in which i feel like my body is going to dissolve, failing to maintain its form from lack of energy. Instead it is cold waves of fatigue that way me down and eat at my determination. I’ve learned that if i push in this state, I will end up in that first state. I try not to.
My pain this year, even with pain control has gotten much higher, over all body pain, burning skin histamine reactions, subluxated joints, constant deep joint pain, and periodic headaches that nothing stops, all accumulate to a lot of painful misery. Pain so bad that my brain echolalias begging the universe to make it stop, that makes me cranky and impatient on the best of days. pain that seems to heighten my all ready finely tuned senses, until casual physical contact is painful. My clothes hurt me, my entire human interface has pain anywhere it interacts with this plane of existence, impossible to escape.
Whether it is an individual symptom, or a part of the pain and fatigue, I don’t know for sure but seemingly higher pain levels have resulted in a months long battle with deep immobilizing depression, despair, communication inability, and intrusive thoughts. I am safe, but miserable, learning how to treat and stave that off so that it doesn’t swallow me whole.
There are at least 2 more months until it warms up, possibly three depending on how this winter goes. I try not to be demoralized by that. I am feeling a little better for now. But in the winter, I can not count on that to last. The next illness, stressful life situation, storm, cold snap, or anything really, could have me sliding right back into flare land.
But for now, I’m feeling a bit better. I am able to write a little.
Today I am going to switch the rat babies to a larger cage and hopefully tomorrow I will have the strength to work on laundry sorting. One day at a time. One moment at a time if needs be.
Thank you for bearing with me. i love you and appreciate you.