#44 My ALS Journey—Rules 4, 5, 6

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A Rule Book (cont.)

Book and Artwork by Susan Catlett

I think my list of rules is getting longer; I now have over ten. I should probably condense and/or combine them; maybe I will at some point, but right now, I will ramble on.

I am listing only three at a time so you won’t be overwhelmed.

Rule #4
Ask for help when you need it; otherwise, do it yourself. This is a hard rule. Nobody likes to ask for help. We want people to be able to figure it out without being told, but then we get mad, or our feelings are hurt if they don’t guess correctly. This is a lose-lose situation. Just be honest and tell people what you want or need. I have found people really care and want to help. They are just unsure of what to do. We need to help them out. I am not very good with this rule. I am too independent.

Rule #5
Get over your pride and your desire for privacy and modesty. It is not going to happen. It is like having a baby. On my first day with my Personal Care Giver, I barely knew her name, and I had to strip my clothes and my dignity if I wanted a shower. I have been doing it every day since.

Rule #6
Rest, rest, rest…if you don’t rest, you will get grouchy. Nobody wants to be with a grouch. This is sometimes difficult, the resting part, not the grouchy part (that comes easy), especially when you want to be part of the action. I have to learn to set some boundaries for myself, or I am just not much fun to be with. Ask Cliff when it gets past 5 PM. I am done, and I just want to put on my pajamas. Sometimes there is some morphing where I can go from somewhat pleasant to grouchy to bitchy in just a few seconds. It is not a pretty sight.

To be continued…

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