Today’s a new day! Ever wondered what a day living with chronic illness and health challenges looks like? Today I will take you on a journey into the twist and turns of a day living with long-term health issues.

From the moment I wake up, I’m already facing barriers. My chronic illnesses make it difficult to get going. For those not aware, based on my health issues, I have slept in a recliner for about the past twenty years. It’s just too hard to get in and out of a bed. Every day is a balancing act where I have to be mindful of my energy levels and make sure that I’m taking time to rest. 

An Introduction To My Health Journey:

In 2002, I was diagnosed with multiple forms of arthritis. That year was filled with a lot of experimental treatments. Then in 2003, I was diagnosed with cancer. Thankfully I was able to have surgery to remove the tumor and never had to walk through the struggle of chemo and radiation. Let’s speed things up. From 2007-2024, I have been diagnosed with Parkinson’s, Myasthenia Gravis, Gastroparesis, Type 2 Diabetes based on all the steroids, had a stroke, diagnosed with cluster headaches and just a few months ago was diagnosed with early onset dementia. That’s my rap sheet!

What My Night and Morning Looks Like :

Based on my neurological issues, I am up and down most of the night. So I never wake up feeling rested. I wake up stiff, so I need to move around and take a host of medications in the morning. Of course meds have side effects, so that can be difficult.

Since I deal with gastroparesis, eating has been a major issue for many years. That makes taking in fluids and food a huge and painful task. So every meal, every day is an adventure.

My mornings are dedicated to spending time with God, journaling and trying to exercise. For me, walking is the best type of exercise for me. I never know how many laps I will be able to get in. I have to be careful not to overdo it. If I do overdo it, my body will pay for it the rest of the day. I spend some time each day for reflecting on life and looking at how I can hopefully encourage others as I continue running this journey. These days, I tend to take a lot of short cat naps. Over the last year, the pain has increased, so that’s a daily struggle. Unfortunately, pain meds and gastroparesis do not really care for each other. So most days, I just live with the pain.

One thing I choose to do everyday is get dressed. I never lay around in my sleeping clothes. It makes me feel good to get cleaned up and get dressed.

My favorite part of any day is spending time with my bride and friends that choose to reach out. Spending time with loved ones is very important to me. I love sitting around and enjoying great conversations. Also, I try to read every day. My love for reading has been challenging the last few years, since it’s hard to stay concentrated. I also spend time listening to music each day. Music can make everything a little bit better.

In the evening, Laura and I like to talk about our day and possibly watch a little television. Based on my day, my bedtime varies. But since I sleep in my recliner, I can fall asleep anytime my body and brain allows me to. Every night is an adventure.

What I consider a daily self-care must do:

Writing about what I’m grateful for in my journal helps me remember the positives, even on those really hard days. Living with long-term health conditions can be exhausting and can be very negative if you allow it to get on top of you. 

Several people have asked if I had one day without pain and could step away from my health journey what would I do?

I would lace up my running shoes and go for a very long run. For those new to my journey, in my healthier days I was blessed to complete 350 marathons.

Another question people asked me a lot: Is there anything I would like to share about daily living with chronic illness and life challenges?

There’s a lot, but I do not want to make this post any longer than it already is. One of my hopes is, people will realise that we never know what someone else is really going through. So be kind and respectful. It doesn’t help when people tell me how I should be living out my health journey. Just be supportive and walk through this journey with me.

By sharing what my day to day life is like, I hope I can raise awareness of the bigger picture as people only see snippets of my journey online or see me on my best days in person. I am not sharing this for pity or sympathy and I am not complaining. I just want to give you some insight into this crazy beautiful health journey.

The Takeaway:

Writing about my day living with chronic health issues has been quite eye opening to me to see how much life has changed over the years. I have a strong need to celebrate the love and support I have received over the years from family and friends. Writing this post has let me see how faithful God has been to me, as I continue to run this beautiful journey.

I hope that you have found this post to be a helpful insight into life with with long-term health issues. There are so many people walking through a tougher battle than me. So if you know someone dealing with chronic illness, take the time to reach out to them and support them on their journey. ~OC