Imagine not having control of your body. Your day to day activities are always questionable. Just like your cell phone, once your battery gets too low, your body shuts off.
That’s what chronic fatigue (a symptom often experienced by those of us with Multiple Sclerosis) feels like. And this is just one of many symptoms that may incapacitate us, putting a sudden end to a day full of planned activities.
So, getting an invitation to a social event can actually be a bit discouraging.
How do you respond when you have no idea how you are going to feel that day?
I’ve gone days doing absolutely nothing but resting just so that I can attend a gathering. But, even on those occasions, my body fails to cooperate. Even with the best of intentions, the fact remains that we are a slave to this auto-immune disease.
The best advice I’ve received on dealing with MS is that I must listen to my body.
That means that there will be many times when your “yes” turns into a “no”.
No, I’m not unreliable or flaky. I would love to be the active teenager or twenty-something that I used to be. Some days I forget that I’m on a four hour timer and I over exert myself. Then, I’m down for two weeks minimum. It’s just not worth it.
Now that I live in a new area, away from my friends who understood the complexities of this disease, I get very lonely. I would prefer my friends come over to just watch movies and play games with me so that if my fatigue overtakes me I can just pass out on the couch.
But, I understand that healthy, active people may find that a bit boring.
I just wish that when I received an invitation, there were an option to R.S.V.P. “If my MS allows”?