I often feel like a burden to others when we are planning to do things together, particularly if it is a gathering of friend(s) and/or family over more than one day. Because, let’s face it, I have a restricted scope of activity options, and the need for a certain type of schedule in those options. I need places to sit, and more importantly, there had better be a bathroom. Make it two or three. It’s a real pain, and at times, a real problem. I fight the feeling of guilt and shame over asking others to bear those restrictions with me. Having a disability is an awful inconvenience. It really gets on my nerves sometimes.
Sadly, the inconvenience of disability is often not well understood or accepted by others. There are a select few close friends and family who have come to accept that when they are with me, and want to spend time with me, things get done a little, ok, a lot, differently. Now I don’t get how anyone can plan an outing without knowing if there is a toilet, but apparently it is fairly normal to not give it a second thought. I don’t just give it two thoughts, I might just give it ten.
Done are the days when I can just decide I want to do something, or go somewhere and just take off and do it. I need to make sure I have enough energy. The shoes had better be very comfortable. It can’t be too hot, that drains my energy, it can’t be too cold, that makes my muscles hurt. There need to be benches and chairs to sit down in. I have to time my eating and drinking so that I don’t have to use the bathroom when there might not be one. I have an hour and a half rule in the mornings because coffee is really an IC no no. I won’t go anywhere in a car until an hour and a half after that coffee. Tried giving it up, didn’t fly. If there is no promise of a public bathroom it will be a short jaunt. And yes, I will sometimes buy a drink of something to use their bathroom. But that gets old. My disabilities can be such an inconvenience.
I am an introvert by nature, and need a lot of alone time. I prefer small groups of people, often just one other person, to a group. But sometimes, the being alone or doing things alone or only with my husband, or with my parents, is because I don’t want to drag other people down with having to do things a certain way. And I have had a number of people along the way who have indicated, often without directly saying it, that I do just that. They want to know why I can’t just be more flexible. It is often quite clear that I am in their way of having a good time. OK, so I don’t spend too much time with folks like that anymore, but sometimes, well, it just is what it is. I would love to be more flexible and not be tied to the toilet. Not sure why that doesn’t register. We may be back to the because I look fine thing. Or perhaps it’s the you should suck it up and deal thing, and not be selfish because a group is involved. Which brings me back to the guilt and feeling like a burden.
Having a disability can be so inconvenient. Now please excuse me, I have to find a bathroom.