Journal August 8th

 

I wake up most mornings in total agony before dragging myself down to the kitchen to take all my medications with strong instant coffee - and that includes my pain medications. While some mornings are worse than others, it's overall the same, and it's rough on my already-challenged body. This way of living just isn't sustainable. Honestly, I don't know how coffee alone hasn't caused me to drop dead. I am drinking way too much of it, just to obtain some superficial surge of 'energy', if you can call it that ... and to cut through the otherwise cloud of drowsiness caused by all my medications. They say people in the psych ward drink pots of coffee if they can get their hands on it. Some psych wards that are housing longer term patients have a pot on brew that people can help themselves - which they do many times over. I understand why they do that. The cloud of drowsiness feels icky, and they can't think straight that way. It's a quality of life thing, even though drinking tons of coffee if very bad for you. I'm not against treatment for serious mental illness, but all those meds and coffee are not sustainable and people in that boat don't seem to live that long .. for logical reasons. 

I'm in a similar boat... and I don't know how to get out of it. If I just step out of the boat what am I met with? Deep ocean; I'd drown. I need the resources that I don't have to get out of a boat which is slowly sinking. I need another, bigger and better boat to come along and drop me a life ring or ladder so I can step onto it and be safer and [properly sustained so I can move forward. My fundraiser is like the SOS calls I am making from my sinking boat. I just don't know if they'll be heard on time, though I haven't given up hoping. I am exhausted trying to keep afloat, patching up holes in my sinking boat. 

Those patch ups are in the form of near-manic smiles often flashing the gold onlays I had - for just an extra couple hundred bucks (far from the cost of gold dental work on actual teeth) put on three upper molars of my upper partial denture (to give the appearance of natural-ness), pretty eye make up that I love but is hard to do (my hands shake, my fine motor is weak), going for walks at parks with my stick when I can, home cooked yummy meals modified to try and minimize the impact multiple effects from several foods, celebrating and sharing the one music album I as able to create in spite of things, watching interesting shows and favorite movies on YouTube, Netflix and Disney Plus, going for walks at when my opioid buzz is prominent enough that it's blocking the pain ie immensely riddled-with-pain neck and body, cuddling with the fur babies that I divert my pain into my loving on, and last but not least, sharing about my experience and using that to educate - as well as relate and resonate. All of that has me feel a little like I am taking some of my power back, but I call it 'stealing joys' - I have to practically steal them. 

In terms of the last one, I often end up feeling frustrated and repressed. I want to share more than I have been able to lately. I wouldn't be here if I hadn't been repeatedly failed in life, and met with a huge lack of privilege to contend with. I didn't choose to be born into a body that would be genetically challenged in terms of health. I didn't choose to be born into a dysfunctional family that, although originally relatively financially privileged, would come to be impoverished due to repeated, severe financial losses - for in which a toxic marriage played a role. I didn't choose to be neurodivergent, on the autistic spectrum, in a world ignorantly inhospitable to people like me... especially women. Not that I am ashamed of being neurodivese, but the reality is that in the world we live in it is - overall - a disability. Big time. This is even worse if one, like me, is different but in ways that are not overly obvious to people. This causes our differences to be characterized in unfair ways like being annoying, weird, rude, confusing and even 'stupid.' Being repeatedly seen in this light and treated as such is traumatic; it does a real number on the self-esteem and confidence. I am fed up with all of it. I am burnt out and fed up - I just want to be me and be free (as free as I can, all things considered.)