Ever feel like there isn’t enough time in the day?  I think everybody has felt that way at some point.  Whether it’s juggling time between work and family, school and friends, volunteering and working, or just living life, we all have found ourselves trying to find a good balance.  Sometimes, it seems difficult to find time for everything.  People have to prioritize their activities based on what’s important to them.  For people with disabilities and health conditions, it’s no different.  Often, we have some additional things, such as appointments, treatments, and cares to juggle.

A couple of years ago, I wrote an entry about time management.  I explained how I have to be a very organized person and how I live a very scheduled life.    Everything from the time I get up in the morning, to when I eat each meal, to when I use the restroom throughout the day, to when I get back in bed at night… everything is scheduled.  It’s just the way it has to be since I live independently with the assistance of drop-in care aides.  I’ve gotten used to this and I have a routine that works well for me.  Having scheduled care times also means that I have to take advantage of my “free” time between shifts.  I have to make sure I get everything I need done between shifts.

Recently, I’ve found my schedule is getting more and more complicated.  In addition to my increased involvement in disability advocacy efforts, more health issues due to cerebral palsy have surfaced, and I’ve had more medical appointments in the past two months than I’ve ever had before.  After my unexpected surgery in early January, my neurosurgeon team referred me to a rehab doctor (he’s actually a physiatrist) to oversee my medical care.  I saw him first in early March and he referred me to multiple different doctors for various issues I’m having.  I admit, my parents and I weren’t sure what to expect going into the appointment, and it was a bit overwhelming getting all these different referrals.

Though it may change in the near future, my parents continue to drive and accompany me to my medical appointments.  My mom knows my schedule, so, for right now, she schedules all of my appointments.  We’ve had several already and have a few more in the coming weeks.  Each appointment often results in subsequent appointments or treatment.  We’ve learned that some issues are treatable, but some aren’t.  Cerebral Palsy is considered a non-aggressive condition, but the secondary effects of it often causes havoc as people get older. 

Some appointments result in ordering new equipment and additional personal care needs which means more meetings and appointments to get everything setup.  With more equipment and exercises comes the need for training for my staff which takes time not only to actually do, but also to setup and coordinate.  Right now, my mom and I are trying to figure out the best way to do this.  We’re going to probably end up setting up two training session that my staff can attend.  Since IRIS doesn’t really allow for training hours in my budget, I’m likely going to buy gift cards for those who attend.  

Obviously, these new things will increase the length of my personal care shifts and eventually change my whole routine.  Fortunately, I had my annual Self-Directed Personal Care screen in the middle of all this, so the nurse was able to capture all that’s happening.  My hours will increase quite a bit when my new plan starts in a few weeks.  I’ve been busy trying to figure how to reconfigure shift times to be able to do all these new things.  It’s tricky because I’m not exactly sure how long everything will take.  It’s going to be trial and error for a few months.

Between doctor appointments, meetings with people about equipment, doing paperwork, scheduling aides, and coordinating everything, I feel like disability-related issues have consumed my life lately.   After my mom made me another appointment a few weeks ago, I finally said to her, “I wonder how people find a balance between treatment and just living?”  When do you say enough is enough and just live life?

I don’t know the answer to that question.  On one hand, I know treatment and interventions will probably allow me to be more comfortable and live independently longer.  However, on the other hand, part of me wants to say forget it and just live life.   As I’ve explained in past entries, I normally don’t think of myself as having a disability, but, admittedly, having a disability has been very apparent in life lately.  I feel like I’ve overcome too many obstacles to let my disability completely take over my life.  I have to continue to strive to find the right balance, so I can live life to fullest! 

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.