Pushing Forward

I have gastroparesis, schizoaffective disorder and cognitive impairment. Too much fun for one person to have for sure! Because of my writing, I’m open about my struggles. I try to help those of us with nonapparent disabilities have a voice. It’s challenging. We are more than our conditions, but the fact is they impact us. We have to overcome the odds just to do the basics. My stomach doesn’t digest food properly, so I have to closely monitor what I eat. I take heavy duty anti-psychotics, so I must sleep a lot. My cognitive impairment affects my ability to remember, organize and process experiences. All of it together simply overwhelms me sometimes. I’m tired of struggling, but every day I push forward.

I am extremely high-functioning. Because of this, people frequently think it’s not “that bad”. Trust me, it is. I’m on vacation right now with my extended family. It’s making me acutely aware of the ways I protect myself at home. Trying to find a restaurant with food that is easy to digest has been more challenging than I anticipated. Trying to exist on 7-8 hours of sleep instead of the 10 my body needs, leaves me exhausted. We went on an audio tour of Alcatraz that left me in tears as I struggled to understand what the voice in the headset was saying.

Fortunately, my family has been so supportive and understanding. I belong to some online support groups and that is not many people’s experience. I’m not put down or made to feel inconvenient. I’ve had to say, “Don’t worry about me” because they’ve tried so hard to accommodate my needs.

It’s easy to feel like a burden sometimes. But this trip has also taught me the importance of taking care of myself. When I started my vacation, I was in a gastroparesis flare that caused intense pain and nausea. After two weeks of religiously watching what I eat, it has since eased up. The strict diet I must follow has allowed my digestive system to calm down. I actually woke up this morning and my first thought wasn’t, “my stomach hurts”.

If you have someone in your family with any type of illness – physical, mental or emotional – please show some grace. While there are, of course, exceptions, most of us are just trying to survive. We’re not seeking attention, we just need to take care of ourselves and set boundaries. We’re not self-centered, we’re tired of needing to protect ourselves. We’re not hypochondriacs. We have legitimate illnesses that require intervention. We need love and support. We’re doing our best to live a quality life. We’re drained from the fight, but we do fight. No matter how hard it is at times, we keep pushing forward.

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Photo by 愚木混株 Yumu on Unsplash