If you are interested in learning how things work daily from a perspective of someone who is disabled, I think this may help you understand a little bit more. I personally love hearing about how others go about their lives. I find it interesting to learn how people cope with their hardships in life. That gives me a better understanding of them as a person.
6 a.m.
There is not a day that goes by that my strength, and what I will have to do during my day on such limited strength does not cross my mind within a few seconds of opening my eyes. I can do this, right? I think to myself. Being able to rise is a gift. Sitting up in bed is always a challenge for me, especially as I am just getting going. I take my first step of the day, and I often think of a baby giraffe taking its first steps for some reason. Teetering on my weak legs and trying to steady myself between the wall and the bed. As the years go by, it gets harder and harder.
As I find my way to the coffee pot, I know which walls and furniture I can hold on to get there. I often count my steps when I walk. It helps me focus. Losing my train of thought when walking often causes me to stumble.
6:45 a.m.
After I have had my coffee, I make my way to change for my daily workout. By this point, my walking feels a little less baby giraffe and more just like walking with heavy weights on my body. Often, my workouts happen in the pool. I have learned to not even let excuses creep in my head. It is non-negotiable.
8 a.m.
Head to the shower, which is another feat of physical strength. It takes great energy to shower, dress and put shoes on. Shoes are my nemesis!
9 a.m.
I do my errands such as grocery shopping, doctor appointments, or whatever else needs to be done outside the home. The main thing I have to check before venturing out on my own is the wind speed. I know, this may seem silly. If it is over 10 mph, I cannot go out on my own. It takes the smallest of things to knock me off balance and I fall. I cannot express enough the deep concentration it takes just to walk into a store. The last thing I want is a public fall. I value my independence, so I try to choose wisely so I can keep it.
11 a.m. to 5 p.m.
During this long span of time is when I do my writing for my freelance job, this newspaper column, my blog, meetings, phone calls, and get household tasks done. During that time, I also do laundry and make dinner. I try to prep dinner earlier in the day because by dinnertime my strength has really declined.
It has been a year since I have started using my manual wheelchair in the house. I like the feeling of successfully learning how to do things from my wheelchair. It makes me feel like I am helping to prepare for what my future will look like. There is a difference between being pessimistic and being prepared. I typically rely on my wheelchair later in the day.
6 to 10 p.m.
Often, by this time, I’ve hit a wall and I’m pretty much down for the evening, not walking much. If I have evening plans, then I would have had to try and plan my day around that. I would have to have added rest to be able to make that happen on a physical level. Otherwise, I just do not have it to give. That is why spontaneous plans cause me anxiety.
10 p.m.
I try to get to bed around this time. Tip … I always sleep in satin pajamas, which has been truly life changing for me. It helps me to be able to move around in bed so much easier. It is a wonderful thing to try if you have mobility issues. Because they are slippery, it does a lot of the work for you.
When the normalcy of life and disability intertwine, that is what makes our lives unique. When our struggle mixes with the mundane, that is when things can feel the hardest.
Most do not escape hardships in life. Maybe your thing isn’t physical like mine, maybe it is emotional. The thing that bubbles just beneath the surface that could wreck you at any given point. The thing you have to accept no matter how much you do not want to. You keep on living and trying to make the best of it.
Once I learned to stop fighting the thing that lives in me, is when I started truly living. I had so much more peace when I changed my way of thinking. It was completely freeing and a huge weight lifted off my shoulders.
Until next time …
Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, wife, and mom of two boys. You can find her blog at humblycourageous.com and reach her on Instagram @ashinneman.