Fatigue is probably the most common problem for MSers. Up to 90% of people with MS have to deal with it. Because it's an invisible symptom, fatigue can be the most difficult for others to understand. Family members as well as friends have a hard time "seeing" what you mean.
It's frustrating for the person with MS. Trying to explain to your family or friends that you won't be able to attend the event you had planned weeks before can be very difficult. Especially if you are newly diagnosed and those around you don't yet know how MS effects you.
You can't just "push yourself". When you experience this invisible symptom, one of the best things to do is rest. You will quickly learn, if you do “push yourself”, the effects can be much worse. The recovery can take much longer, from just a day or two, to a week or more.
I must admit, I used to wish that Cir would at least try. The kids wanted to go on a picnic. Everything was ready. In my head I would be begging, "Why won't you just try!" I feel bad about it now, but sometimes I'd even try to make him feel guilty.
"Well I'm not going to tell the kids this time. If you don't want to go, you have to tell them."
Cir would. And they were kids, so they would be disappointed, of course. But they would soon get over it. Daddy would let them play on his back while he lay resting on the floor. Or they would have fun coloring his toenails with crayons. He would promise to play video games later after he felt better.
I would watch them as I put everything away. All the while, wondering how many broken promises their little hearts could take. Still wishing he could have pushed himself just this once. Knowing that if he had pushed himself, the outing would not have gone well.
Coming to terms with this, has been a long road. Now I need to help others understand. MS fatigue is not something you can just push aside and hope it will go away. Cir had to know what types of things caused it and what strategies he could use to minimize it.
The lesson MS patients need to learn early on, is how much they can handle. You need to tell (or better yet, teach) your family members and friends, how fatigue effects you on a day to day basis.
Don't feel guilty if your family doesn't understand it yet. That's their problem not yours. They don't have MS. You do. When they do finally understand, then you'll know they "have your back" when others seem not to care.
I love Cir and always will. But in the beginning, I used to think he just didn't want to do anything. I felt like he didn't care about the way others saw us. In a way, he didn't. He knew his limits. He had to take care of himself the only way he knew how.
Now, I know that the fatigue Cir feels can come on him at any moment. He can be up and going one minute. The next minute he's overcome by it. I've learned to ask questions and to accept when he can't go on. I encourage him to rest awhile and see if that will help.
Sometimes resting or lying down isn't the answer. He gets tired of lying down all the time. He just needs to sit and chat with friends on the internet. Talking with others who are going through the same thing can be a big help.
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Cir & Akrista
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