December 20, 2013
After all these years, I still get to the point of total meltdown when in the midst of the holiday season. I know I’m older, I know I have MS, I know people don’t expect me to wait on them or see a perfect house… Yet I still occasionally get that desire way to do things myself–perfectly with ease and energy. It used to be my personality.
Even though I also know those days are long gone, the old personality resurfaces. I still freak out every December as I tearfully stumble through trying to decorate and send cards. When it gets to the point like a balloon getting ready to burst, I have learned what to do for myself.
I had heart-to-heart talks with two friends on Monday, who are sixty-ish and feel like their to-do lists are never completed because of their lack of energy. I talked with my good-humored neighbor, who is legally blind and “gets” what it is like to constantly have to rely on others for help. And then I cried and cried. It all made me feel better. I had to let go and move on.
Between Christmas and over New Years, I will have relatives coming to stay with us for a week. I remembered this article I wrote last summer and re-read it. Good advice; I’m back in the swing of things.
I am re-posting it because I think anyone with MS or a chronic illness would benefit from reading it whether it is for the first time or not. It doesn’t matter what time of the year it is either, though right now is a perfect time to put these things into action.
Managing Overwhelming Circumstances
“Speak Up, Nicely.”
August 13, 2012
It was 117 degrees yesterday, and the weather prediction doesn’t expect the temperature to go down much over the next week. My family from out-of-state is staying with us for the next ten days. Between the heat, fatigue and overwhelming activities under my roof, will I manage? Yes.
How? I learned when to say “yes”, “no”, and “would you please…”
This wasn’t something that came easy to me when I was diagnosed with MS. I was always a very independent person, offering my help to others. It took a long time to use these words in the right manner and circumstance. After all, we are talking about a change in behavior. Changes in behavior do not happen overnight, but it can happen if you want them to.
For me, it wasn’t a conscientious decision on my part to ask for help, accept help, or set limitations. The mounting of excessive fatigue and other interfering symptoms forced me. If I didn’t succumb to changing my behavior in this way, I would not have survived my MS.
Not only is it essential to me, it’s essential for my friends and family, too. In the beginning, they wanted to help, but were cautious about what to do. So I learned to open my mouth in the correct way. I set the tone: if I am comfortable, they are comfortable. If I tell them what I need (or don’t need), or what to do (or not do), they are glad for it. Everyone benefits.
It was difficult in the beginning for me to say “yes”, “no”, or “would you please…” But once I got started, it got easier.
Here are examples of this week so far:
“OK. You know the rules. Mi casa es su casa. Help yourself to anything you want and clean up after yourself.”
“Would you excuse me, please? I am so tired and need to lie down for awhile.”
“Yes, you can help—could you finish cutting up these veggies? And can someone else take out the garbage?”
“It is SO hot. Would you please get me an ice pack from the freezer—there’s a crowd in the kitchen!”
“Would anyone mind going to the store? We need to get…”
“No. As much as I would like to go, I better not. It’s too hot and I’m too tired. When you are gone, it will give me a great opportunity to sneak into bed and take a nap.”
“Yes, you can run the vacuum for me!”
“No, you guys go ahead and watch the movie—I’ll watch it another time. I’m going to hit the sack early.”
It works beautifully. My family is great–willing to pitch in, and understanding my need to take care of myself. They love to help me, and I love their help and appreciate their understanding.
Gone are the days when I felt that I needed to get up first in the morning to make coffee. Gone are the days when they felt uncomfortable as they watched me struggle trying to fix a meal for them. Gone are they days I felt too proud to ask for help. Gone are the days when they felt intimidated to offer help.
So, do yourself and everyone else a favor: Speak up, nicely. It is a win-win situation.