A woman in a wheelchair looking sad and holding her stomach in front of a keyhole while people party behind her

Why am I Always the Party Pooper?

I have gastroparesis, along with spinal muscular atrophy. I was diagnosed with it last year after almost a lifetime of stomach and GI issues. With the diagnosis came orders of how to eat, when to eat, what not to eat and meds. Several medications to keep me digesting properly, keep my stomach healthier and keep me from getting malnutritioned because of my restricted diet. 

Is a bathroom handy?

I used to be worried about mobility issues and strategically planned trips and events around the ability to get in doorways and if sidewalks were available and if I could safely get into a bathroom if needed-and use that bathroom! Lately though, I have been planning events around the gastroparesis flares. It’s been a life changing experience and for the most part, it has been very positive. However, there are the crappy days.

Today was a crappy day

One of those crappy days happened today, but they happen often. Today was a typical day, we had planned to go to a birthday party for two important people and I was super excited for it. I planned on getting up early, getting ready, putting on makeup and having a great day. 

Unfortunately, today was a day that my gastroparesis decided to flare. I woke up earlier than I expected with what felt like a gremlin trying to claw itself from my guts. The pain was bad enough, knowing that I now had to plan a day around the bathroom again was even worse. Most of all, I had a huge sense of guilt knowing that I would have to cancel on the birthday party. 

It’s not just that I needed to make sure the venue was accessible, and the bathroom was, too, it was now that it was an hour and a half drive one way to the party. On a normal day, that’s not much of a problem, but on a flare up day, I cannot easily run errands in my town let alone drive outside city limits for fear of not being able to make it to a toilet in time. Today is a crappy day-literally.

Feeling guilty when my chronic illnesses get in the way

The guilt I feel when one of my chronic illnesses creeps into my daily life, especially when it affects others has a really negative impact on my mental health. So often I am used to just putting on a happy face, or masking, my pain or discomfort so that I look ‘normal’ to others, or at least approachable and not grimacing and when I cannot keep that façade up, I feel guilty for how I inconvenience or make others feel because of my illnesses.  Feeling guilt or like I am a burden is something I struggle with constantly and days like today do not help me feel any better.

Learning to appreciate the good days

All the crappy days are just that: crappy. However, I am very glad that I have a proper diagnosis of my issues and that I am getting treatment. I feel lucky in that and that I have been getting progressively better with handling my chronic conditions. Some days are going to be crappy, but now I have some days that are wonderful, and things work out as they should. I do my best to focus on those days and not let the crappy days overwhelm the great ones.

To all those who struggle with crappy days, especially during holidays or important events:  I see you, I understand you and I validate your pain.  Let the guilt flow away and don’t hold onto it. Chronic conditions are not your fault and when you have those precious moments of greatness, grab them, and hold them tight to remember during the crappy ones!

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