#45 My ALS Journey—The Rule Book: Rules 7, 8 and 9

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A Rule Book (cont.)

Book by Susan Catlett

Having fun and looking for joy in each day is one of my personal rules. I started my Rule Book to help me put some substance and reason behind some of the decisions I am making and for the fun I get from writing this blog. If you are following me, you have already read rules 1-6. This is the next segment of my Rule Book, rules I have made for myself and for anyone else who might enjoy them. As I mentioned, these rules are nothing new or extraordinary. In fact, I hate even calling them rules, except that it gives me a little more structure than if I just called them suggestions or guidelines, like the Ten Commandments; they aren’t suggestions, either.

In going through this little health crisis, I have learned that it is important to have some self-made rules in my life. There are days I am tired. I don’t want to leave the house or see anyone, but I have a rule. I realize this sounds silly. I don’t have to follow a self-made rule, but the rules keep me moving and give me purpose.

Rule #7
Take good care of yourself. Do this for yourself and those around you: shower, dress for the day, look your best, and put on makeup. This takes physical and mental energy, but it is well worth the positive emotional charge it gives you, even if you have to have someone help you do this, which I do. Buy cute shoes; the more expensive, the better, especially running shoes when you can’t walk or run. This will drive your grandson crazy.

Get pedicures and manicures, and throw in a massage if possible. Let someone pamper you. I am sure if there is a Rule Book somewhere, this rule would be in it.
When I first retired, I rid my closet of all my going-to-work clothes and kept most of my weekend wardrobe. In the beginning, thinking I would be dying soon, I thought I didn’t need many clothes. However, when I realized I would probably live for a while longer and as I gained weight from lack of exercise and rolling around in my wheelchair all day, I decided I needed new clothes (see blog: “What to Wear in a Wheelchair”). Going shopping is a definite plus for taking good care of yourself and keeping a positive attitude.

Rule #8
Use your energy for positive people and life experiences, and do something fun daily. I learned this from the staff at the ALS Association. At the time, I was still pushing myself to use a walker and didn’t want to give up what I thought was independence and start using the Go-Chair. When I switched from the walker to the Go-Chair, I gained more independence because I had more energy to do what I wanted. Over the past two years, I have often relinquished something I thought was important for my well-being, only to find I had more energy for something far more important.

Spend your time with positive people. Don’t let negative people drain you of your energy; it is not worth it. Take time to think about what and who is really important to you, use your time and energy on these things, don’t waste it. Life is short and precious. Try to avoid those situations that cause you stress and conflict. I have tried to meet with people I care about that I didn’t spend much time with while working. Cliff, as always, drives me to these rendezvous and patiently waits so I can visit with dear friends. I still have a long list of people to connect with, and I am looking forward to seeing many again.

Rule #9
Maintain your faith. As I have shared in previous postings, I am thankful for my relationship with Jesus because being diagnosed with a devastating illness like ALS certainly can shake your faith. I have found God doesn’t mind and still loves me despite my bursts of grouchiness, anger, and frustration, but most importantly, He hears my voice in the middle of the night. It is well with my soul.

Take time every day to nurture and feed your spiritual life. It is too important to let it languish. You need God, and He wants to be there for you. This is most definitely a win-win.
The Rule Book, to be continued…

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