In my family, I have a reputation for everything from correctly predicting the gender of the next child to enter our family, to finding lost items through visualizing their location. My grandmother always said I had some sort of “ESP.” It is uncanny how some information seems to come my way, but I in no way consider myself to have some unique gift.
On the other hand, I’m very observant and curious and have the hearing of a 17 y/o (so said the audiologist in my ENT’s office) so eavesdropping is my forte. I just like to understand the reasons behind things. I ask a lot of questions. I’m really not nosey, as the information stays in the vault, but I have this overwhelming need to figure things out. I like to know the intentions of other people.
The downside to this is, my body is reactive to the tons of messages bouncing off my now slightly limited brain. I can’t eat when I need to focus. Some call it a nervous stomach, but since I was a kid, it has never been a priority, especially with my propensity to vomit in a projectile manner. I can’t sleep the night before even something slightly important. An exam at school, a meeting, a doctor’s appointment, a social event, etc. I have too much weighing on me right now. They’re all priorities. Many with a deadline. Many involving social skills which is a real struggle at the moment. My thoughts are slow and jumbled and I’m still experiencing difficulty with speech.
With all these things to juggle and I’m being hit from all directions, I feel like I’m stuck in a sinkhole backfilled with quicksand. The harder I try, the faster it swallows me up. My stomach is constantly in knots, my joints ache so badly I barely leave my bed. Being pushed past my limits has made me finally have to address my mobility impairment and not sweep things under the rug to make it easier on everyone else. I am not ashamed of my rollator or wheelchair, but some people in my life are. Others must see it as unnecessary. My dad is the only one to ever ask if I need help or to insist on carrying something for me, but he still doesn’t get it and I don’t know….
I don’t even go downstairs most days now. It’s just not possible. I’ve done what I can to take sufficient care of myself. I now bathe and wash my hair in the upstairs bathroom with just a sink and a bunch of towels. I also wash my underwear and PJs in a similar fashion out of necessity.
I also finally pulled my shower chair up here, where it doubles as a place to sit to dress and somewhere to sit between rinsing my hair. I wish I had thought of this sooner.
I’m still feeling awful, but making sure I get these basic needs taken care of does help my mood. I’m a bit of a hygiene fanatic. Side note: cough into your elbow, people!
I have a stockpile of nutrition bars and need to replenish my bottled water supply, but at least I’m providing some nutrients at times when I might otherwise just not bother eating at all or just eat junk. It also helps that I schedule the necessities over the course of each day so that I am reminded and I don’t overdo it. I need rest through the course of the day whether it be a nap or watching a movie or coloring or working on a blog post.
I’m very frightened that my worst nightmare will come true and I’ll be placed in some assisted dying facility before I can get independent accessible housing. I may have a good 50+ years left on this planet, if G-d sees fit, and I want to properly take care of myself so that I live at least most of that time like any other woman in my community.
I’m begging the powers that be to make a special effort to rescue me from this quicksand and not be made to feel less valued, unworthy and just another problem rather than an asset. Please. Disabled lives matter too!