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Having a Disability Often Feels Like a Full-Time Job
As I’m writing this, I’ve spent the last hour coordinating caregiver schedules, arranging transportation for my next physical therapy appointment and ensuring that I have rides for weekend plans. This is all on top of my daily responsibilities for my real job.
It’s one of those days when I’m reminded how much additional work there is each day when you have a disability. I’m willing to put forth the effort, as I enjoy the independence I do have. Though I live with my parents, I work full-time, have a caregiver with me throughout the week, have friends who drive me and I help out my parents a lot financially. I pay rent, cover caregiving hours that aren’t covered by the government and pay for all my entertainment and leisure expenses. I enjoy the feeling of being as independent as I can, but it takes a lot of additional effort.
I’m sure all of us can relate. Between working, managing caregivers and attending to our own health needs, it’s exhausting. I have my own strategies for stress management which I’ll share in another post, but for now I just wanted to discuss this with you all. Do you all feel this way sometimes?
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7 Replies
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Here’s something that I never understood. When I was working full time for ExxonMobil, I would go to work at 6 o’clock in the morning and get off at 3 o’clock in the afternoon. I would then go home, take off the shirt and tie, put on a collared shirt and go teach my college course from 5:30 in the afternoon until 10 o’clock at night. When I was getting my MBA, I would teach on Tuesday and Thursdays, then I would go to school to finish my MBA on Mondays and Wednesdays. Even with all of this activity, I still had time to get a lot of the things done that I wanted to get done during the week.
Now that I’m on permanent disability, and have quite a bit of free time on my hands, I cannot find enough time to get everything done that needs to get done. Even though I have a full-time job, there’s still not enough hours in the day for me to get everything done that I want to. Can somebody please explain where all my time went?
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I get what you mean. For me, college was actually easier to plan things. Though it was in many ways a busier time for me than now, there were always people surrounding me. As such, finding the help I needed wasn’t hard. It was also easier to meet up with friends because everyone was on campus and within walking distance of coffee shops, restaurants, etc. Now that I work from home, everything requires more planning.
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Totally understand where you guys are coming from. Sometimes friends and family don’t understand why I can’t just do something at the drop of a hat. They don’t realize that not only do I have my schedule to work around but that of my pca’s as well. Not to mention my two jobs, volunteer work, service dog and various appointments. Plus it just takes longer to do the typical stuff. It’s a myth that as disabled individuals we sit around twiddling our thumbs all day. Guess it’s just all in a days work as they say.
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I have a pretty large social circle, but only a handful of friends really “get it,” like you said. Those people are very understanding, which I’m grateful for. But yeah, many others just don’t get all of the things that come into play when I’m trying to plan something.
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Yep I definitely understand. I have more expenses and overall concerns in life than the average person, yet way less means to accomplish them. It’s really frustrating.
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It certainly is. By the way, how’s your caregiver search going? I know you wrote about hiring from an agency in another post. I was just wondering if there was any update.
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Nah no updates really. The lifting issue is kinda problematic.
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