Hello and welcome to Humbly Courageous!
I want to take you through the day in the life of someone from my perspective. If you are interested in learning how things work daily for 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, and I think that’s beneficial to any relationship.
6 a.m. My days always start early. I’ve never been much of a sleeper in’er. I enjoy being up early because of all the times of day, that is by far have when I have the most strength and energy.
As I open my eyes, there isn’t a day that goes by that my strength, and what I will have to do during my day on such limited strength doesn't cross my mind within a minute of opening my eyes. I can do this, right?, I think to myself. Some days I daydream about just laying there all day and not having to face the weakness. I would hate that though. So I rise. 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. Many times, I have fallen within my first few steps of the day, so I am always overly cautious at this point. Nothing more jarring than a fall first few steps of the day.
As I find my way to the coffee, 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 always causes me to stumble.
6:45 a.m. After I’ve had my coffee and often regrettably watch the morning news, I make my way to get dressed 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’ve learned to not even let excuses creep in my head. If I want to keep walking, it’s what must be done to have any kind of fighting chance. It’s a non-negotiable.
7- 7:45 As I said, a lot of the time my workouts are done in my therapy pool, but I also do other things on those off days. Sometimes really light weights, or stretching.
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| My therapy table has been a life saver for doing exercises |
8-9:00 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!
9:00 am This is when 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, that probably seems silly. If it’s over 10mph I cannot go out on my own. It takes the smallest of things to knock me off balance and I fall. I once got blown onto the hood of a car. It’s ok, you can laugh. After the fact, it was a funny story to tell. 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 have had many, and most of the time people don’t offer to help. You’d be surprised how many just glance and move on, likely assuming the worst of me, not knowing my reality.
11 a.m.-5 p.m. During this long span of time is when I do my writing for my freelance job, my weekly newspaper column, my blog that you are reading now, 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. There aren’t many nights that I don’t have dinner on the table for my family. I like taking care of them in that way.
Doing laundry and housework is becoming trickier the more the weakness worsens. I am having to do a lot of things in a way I never have. It is learning new things and failing, and trying again. You can imagine how much time that adds to my daily activities. I have had to get help for the major cleaning of my home. It’s just not within my wheelhouse anymore. That’s something I’m not going to shed tears over passing on, ha! I would shed tears if I could no longer cook or keep up with the laundry. Those are things that I enjoy for the most part, and it’s a huge contribution to the household which is of utmost importance to me.
It’s been close to a year that I have started using my manual wheelchair in the house. This greatly helps me to rest my legs and preserve some strength. 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 likely look like. There is a difference between being pessimistic and being prepared.
Another thing I’ve noticed over the years is, of course, my endurance decreasing with the decrease in strength. I’m learning how to balance that. I am forced to take a lot of breaks. I find if I don’t fight that reality, then I am able to get more done. My natural instinct is to just go and go until I get everything done and then rest. That no longer works for me and I’m learning that often times the hard way.
6 p.m.-10 p.m. This is about the point in the day where I just can’t do much more. Typically 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 don’t have it to give. That’s 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's a great 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’s what makes our lives different and unique. When our struggle mixes with the mundane that’s when things can feel the hardest. Things that have to be done just to make a life work and worth living.
Most don’t escape hardships in life. Maybe your thing isn’t physical like mine, maybe it’s 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 don’t want to. So you cope. You make it work. You keep on living and trying to make the best of it.
Once I learned to stop fighting the thing that lives in me, that essentially is 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. It felt like I was holding my breath all those years, and I finally let it out. I was exhausted from the fight against something I didn’t have the power within me to change. So, I make a daily effort to stay in that frame of mind. Some days it’s easier than others.
It takes humble courage to learn to live alongside of our hardships and accept them as they are. Keep fighting the good fight. YOU are worth it. 💚
For more on my story, check out my weekly column "Disability in the City" in The Hamilton County Reporter.
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