Wake up and Hate food.

    My 6am alarm is entitled wake up and eat food, but when I rolled over in pain and blurrily read my screen, what I saw was the above. My immediate reaction was "that sounds about right", and I attempted to roll over and go back to sleep. However, my 5:30am alarm is my morning meds alarm, so my stimulant was in my system long enough to push back with a "nope, it says go eat, get up and eat".

    So I get up, perch on the edge of the bed, grumble a bit to myself, and ask my mother who is passing the door of my room, on her way to the kitchen if she wants to hear something funny. She says maybe. I tell her what I misread, with the context of what it actually said "Wake up and eat food" and she is amused*.

*Side note my past and present tense get all jumbled, my apologies to the reader.

    I continued with some word play, as I followed her into the kitchen, based on the song "Personal Jesus by Depeche Mode", but I can't recall the specifics even a half hour later (6:36am). I believe I sang "Wake up and hate food" to the tune when I began, and Mom recognized the tune but not specifically the song or artist. I believe I made a reference to "Reach out and touch faith" which I often change to "Reach out and touch Faythe" which further cemented the connection, although Mom didn't seem to recall the song in detail. I recited the artist and title like an AI on a device, border-line robotic with carefully crafted vocal tone. I announced the say was an especially literal day.


    I experience time in an unusual way. I don't experience it properly linearly. I suspect this is why my verb tenses always give me trouble in writing. For me, time is more like a great expanse, all of space, the universe, in every direction, ebbing and flowing in ways the human mind cannot process.

    I have tried to explain this before to friends and family, sometimes in passing, and sometimes in great depth hoping to strike a chord, and understanding of how I experience things, and why time-related memory is such a tricky thing.

    Alarms set on my phone, to try to function in the "linear time" world.

        * 5:30am, "Morning Meds" (which must be taken a half hour prior to food)
        * 6:00am, "Wake up and eat food"
        * 9:00am, "Eat a small snack"
        * 1:00pm, "Drink nutritional shake"
        * 8:00pm, "Evening Meds"

    Sometimes there are additional alarms set for temporary medications, or times are altered to account for temporary situations, like if Faythe is staying over, and wants to be awake at 8am so that we can do something during shared awake time. That time is optimal for our current sleep cycles and maximum functionality in a 2-3 hour window. Once she is awake and has done her morning routines and I've done mine (interrupted today to write this, which felt important) we have about 3 hours before my medication doesn't help me enough to function, communicate, operate at a basic level with other humans.

    **Health. I'm fairly certain I haven't given great detail in any way as to what I've been experiencing, changes in diagnosis, changes in treatment, here or anywhere in quite a long time. I apologize for that. Because of the way I experience time, as noted briefly above, I don't really process how much has passed within a day, let alone as days run into weeks, months, etc.

    I have quite a list of diagnosed conditions. I think it might be easier as bullet points. Easier to follow and process than my stream of thought style of writing at least.

        * Asthma
        * Hypothyroidism
        * Bi-polar Disorder (Rapid Cycling)
        * Chronic Migraine (with aura, literally never-ending)
        * Obsessive Compulsive Disorder (OCD, mild)
        * Social Anxiety Disorder
        * Generialized Anxiety Disorder
        * Postular Orthostatic Tachychardia Syndrome (POTS)
        * Ehlors Danlos Syndrome (EDS, hypermobility type)
        * Fybromyalgia (recent diagnosis, within last 2 weeks)
        * Sleep Apnea (no sleep study done, diagnosed in hospital)
        * ADHD (surprise adult diagnosis)
        * Transgendered (female to male, legally transitioned)
        * Diverticulosis (medically restricted diet)
       

    I keep an updated list of diagnosed medical conditions and current medications on my phone in the ICE (In Case of Emergency) entry of my contact list, under notes, as well as full memos as backup incase EMTs don't check my contacts. At some point soon, preferably before I turn 35 this summer, I'd like to get a medical alert bracelet that is inscribed telling medical personal to check my phone before adminstering medication. I should also make sure I have an updated list of medications that I have had adverse reactions to.

    What this all boils down to is that due to brain fog from the chronic migraine, or pain fog, or both, I require quite a list of medications to function at a very basic level. Trying to function day to day is often painful grueling work, done with whatever smile I can grasp. It's taken many years of constant breaking-point debilitating pain to have that pain taken seriously, which is sadly not at all unusual.

    My doctor was appropriately skeptical when I came into his clinic initially, but as time has passed (not sure how much time, between 1-2 years) and he has been able to see me at my functional best, and also at my cognitive worst, he believes me. At out last appointment I couldn't string sentences together properly. The words were out of order, if I could grasp at words, and most communication was body language, fixating on the words I could manage, arguing to myself that those were not the words, and expressing explicit desperation. Our temporary fix was to tweak my stimulant to a slightly higher dose, and double the dose of my "as needed" migraine medication.

    For the moment, that combination of changes has given me some functionality. The first few days I had higher anxiety in the morning, adjusting to the new levels of the stimulant, and the first couple of times I treated migraine, I had unholy migraine hangover like I haven't experienced in a long while. However, for a brief 5 hour period, my pain went from a solid and unquestionable 8 on the pain scale of 1-10, to a 3. For FIVE SOLID HOURS. It took another 12 hours or so for the pain to ebb back up to that solid 8.

    I try really hard not to discuss my pain, or my suffering because I don't want to burden my friends or family, and I often feel trapped within that pain. I want to discuss other things or do other things if I am functional enough to communicate.

    That said, while I am able to function to this degree, documenting it is important. I don't know how long this combination will work to allow me to function, and I don't know what we are meant to try next as I'm fairly certain my doctor is grasping at straws trying to find anything we haven't already tried to help me.

    I can't or won't promise to post more regularly, because each time I do so, I end up bedridden for months afterwards, and I refuse to make a promise I know I am unable to keep. What I will do, is promise to try to check in more. That's all I can promise.