People say the being sick is a full time job but it's more than that. It's something all consuming- something that can easily take over every part of your life in a blink of an eye. Unlike a full time job, we can't clock out at the end of the day and not think about being sick till the morning. It's something that's with us every second of the day, despite how hard we try to not let it be.
To say the last six months have been hectic would be an understatement. Between the daily tasks to manage my health, therapies, nursing, many doctors appointments, and fighting with insurance, I no longer feel like a person but more like a diagnosis. Since I was in the hospital for the entire month of March, I have been putting out fire after fire. I haven't been able to catch a break. I'm crazy stressed and no longer feel like myself. I desperately need to take back control of my life.
The next few months, I'm focusing on trying to do more non-medical things and be more social. 90% of my social interactions have been with my parents and medical professionals. I don't spend much time doing things that make me happy. Lucky for me, my mito support group had some great ideas of things I can do for me that are possible with my limitations. I am going to start a new hobby and start volunteering for 2 hours a week. This might seem like something small, but it's a big step for me. It's the first step to taking back control.
I'm also setting a few goals that I want to do this winter. 1) Visit my best friend in TX. This goal might not be achievable though because of my current medical status. There has been 2 big things preventing this from happening- needing a new wheelchair and being on TPN. I've been working hard on getting a new wheelchair so I can travel and should have it in time, but unfortunately I'm still on TPN. The goal is for me to get a j-tube and slowly get off TPN, but I have no control over when this will happen. Things in the medical world tend to go slowly, so all I can do it hope for the best. 2) Try adaptive skiing. When I was able to walk, I loved skiing. It is something that I miss every winter now. I was speaking to someone with Mito and she told me about how she does adaptive skiing every winter and loves it. She actually does it at a mountain that only 30 minutes from my house. Having someone in a wheelchair tell me that she loves this adaptive sport inspired me to give it a try. I am looking forward to trying something new this winter. 3) Go to a play. I love plays and never go. This is something that I can do with my mom that we both enjoy when we need a break from all things mito related.
So here's to new experiences and doing things that make me happy!