Some of you are probably curious what my day to day routine looks like. What exactly does someone in my position do? Collect unemployment and watch tv? Throw themselves into activism with all of their newfound free time? Search relentlessly for a job that can be modified in some way to make it possible? While there are no two of us with the exact same circumstances, I can say with certainty that my typical day to day is not at all what I would have expected or guessed, had someone asked me this question a year or two ago.
My routine remains the same, day in and out. It is governed by my medication regimen, physical and mental needs, and things I need to do to keep my household running. I generally wake up whenever Greg wakes up. It’s important that I have his help in the morning. The first thing I do is take my morning medication. Greg will take our dog for a walk, and I will begin the laborious process of dressing myself, cleaning my teeth, and otherwise getting ready for the day.
Greg prepares food and coffee for both of us before going to work – I avoid using the stove for fear of some involuntary movement causing a burn or a fire. Around this time is when I will begin working on what needs to be done for the day, and Greg will head to work himself. My work for the day varies, but is generally a combination of the following: odd jobs I have found, administrative tasks that need to happen to get my state benefits set up, setting up/confirming/searching for appointments with current and future doctors and specialists, physical and occupational therapies that I can do at home, self-care, and working on various other writing projects, including this blog.
Today, I spent 45 minutes on hold with the NYS Disability office, trying to find out if there had been any cancellations that I could take advantage of for my in person interviews/exams – the last step to be completed before I can receive my benefits. When these were scheduled, I was told to continuously call to find out if there had been cancellations, otherwise I would need to wait for my current appointment, which is not until November. When I finally got someone on the line, I was told that there was no such policy, and that in order to check for any cancellations, my current appointment would be forfeited. Frustrated, I asked if I could be placed on a wait list for any cancellations and was told that there was no such list. Finally, I asked if I should continue to call, and was told that there was no reason to, as this was not a policy that existed. I’m still going to. These things are sometimes just about who you get on the phone. I could have just gotten very unlucky today.
Today I also had many forms to fill out for upcoming doctor’s appointments, new specialists to search for and find the one with the soonest openings, work to do for an odd job, and documentation to submit for a different NYS benefit program (for a second time). I made sure to punctuate the day’s activities with standing, stretching, hydrating, and letting my eyes rest. I have found that without my self-care practices, I quickly burn out. I also simply have to be very aware of how often I am moving my bad leg – if I don’t exercise it regularly, I am almost certainly harming my chances of regaining full use of it again.
The symptoms that I experience daily are frightening and disruptive. I have seizures every day. Some days I will only have one or two small ones. Other days I will have several, some lasting several minutes. I can sometimes feel them coming, and sometimes they hit me out of nowhere – a few times even while walking. When I recover from one, I am often shaky, confused, weak, and upset. After enduring this for months, it has not gotten easier. I also experience brain zaps, an uncomfortable sensation that feels a little like a lightning strike illuminating my body from within, along each vein. Usually these are not painful. It feels more like light. Sometimes, on bad days, they are painful, more akin to electricity. I have suffered from insomnia for a lifetime, but this condition has made my sleep troubles even worse. These brain zaps will keep me up at night, and sometimes when I do fall asleep, I will fall into a paralyzed dream. Nights like these are especially horrifying. I will generally force myself to stay awake those nights out of pure fear of these paralyzed dreams.
This condition has affected my appetite, my anxiety, my depression, and has possibly driven me to episodes of possible mania. Simply the fact that I do not know what this condition is must be a huge part of the anxiety surrounding it. Once I have a diagnosis and a treatment plan, I will feel so much more in control of the situation. But until then, all I am left with is uncertainty.
By not having use of my leg, I am severely impacted in what I can physically accomplish during a day. I am not able to perform most household chores. I need to use a shower chair, a cane, and a walker. I can down a set of stairs by myself, but not back up. I cannot walk my dog. It has been depressing to see my leg and not be able to will it to move on its own. But I need to be able to push past these initial negative emotions and put the work in, so I will be able to walk again.
And on top of all of this, I am generally also juggling medical appointments. I have lists of referrals to get through, task boards of doctors to update, reminders for appointments, and a calendar just for medical appointments, with its own reminders. There are just so many doctors. And still no answers.
I say all of this and make my life out to be some sort of disaster. Maybe in some ways it is. But I am really doing my best to stay positive. I make a point to list people that I love, things I am grateful for, and everything good that happened in a day. I do this all day, every day. I have a personal journal where I have found an excellent rhythm, and even found that by keeping it updated as often as I have been, my writing in other areas has improved, and my mental capacities are sharper.
My life may look very different today than it did six months ago. But that’s ok. I’ll survive – I always have before, right?
Take care, and thanks for reading, xoxo.