Using my time wisely helps me balance medical care, work, and fun
I can't change my health needs, but other changes are within my control
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My daily schedule is full, so it’s important for me to use my time wisely. This allows me to enjoy fun activities and do the work I love.
I face various challenges in balancing my time. Some can’t be changed, but I have found solutions to others.
What I can’t change
Before having fun or working, I have to meet my medical needs so I can stay healthy with SMA. For me, a Vest Airway Clearance treatment lasts an hour. I do one treatment every morning and one every evening.
When I’m sick, I use the Vest three times a day. I can’t change the two to three hours a day I spend on these treatments.
I also can’t work while using the Vest. My Tobii Eye Tracker 5 allows me to type with my eyes when writing columns or doing advocacy work. Yet, as I explained previously, I focus so hard on coughing during the treatments that I can’t do anything else at the same time. Those of us with SMA type 1 generally have a weak cough, so I have to focus and work hard to help break up secretions in my lungs.
I gladly put in the time because the Vest is vital in clearing my lungs. If you require airway clearance treatments, you should make time for them, too. You may be busy, but every minute spent with the Vest is important. It is one of the tools that can help us live life to the fullest.
The cough assist machine is another crucial device that helps me break up secretions in my lungs.
I also get back in bed for about an hour and a half every afternoon. This is a necessity for several reasons. It gives me time to use the bathroom and rest. Sometimes I nap or just relax by watching TV. I feel refreshed when I get back up.
It also gives me a break from my wheelchair. My chair has controls that can recline my seat to relieve pressure off my butt. But lying on my side in bed provides even more relief.
What I can change
However, there are changes I can make to give me more time for both fun and work.
It frustrates me how I tend to go from one hobby to the next. One week, I want to get back to PC gaming. The next, I’m interested in listening to a book series. The following week, I decide to take online classes about artificial intelligence (AI) learning and coding.
But I don’t have time for all these hobbies. The more I flip-flop on what I’m going to do for fun, the more indecisive I am about when I’ll work.
When it comes to work, I love making video presentations on advocacy for Medicaid and Medicare programs. Canva is an online tool I use to design graphics and animations for videos.
The problem is that the requests I get to make these videos are scarce. At one point, I’ll have mastered the skills I need to use Canva. However, so much time passes before I’m given the opportunity to make another video that I have to teach myself how to use the program all over again.
Investing more time learning and creating with Canva seems like the solution, as it combines all the hobbies I’m interested in. It allows me to manipulate graphics and animations, just like in PC games. It allows me to write my own story instead of listening to audiobooks. Finally, Canva has plenty of AI tools for creating wonderful images.
Recently, I joined the Human Side of Rare initiative that Bionews, the parent company of this website, is starting. This will give me the chance to make monthly videos about my life.
I need to seek out more opportunities to create videos instead of waiting for requests to come to me. That kind of productivity will help me balance work and fun so I can soar each day!
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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