Still Learning How To Live With MS
Sunday I had a very busy schedule. Something I don't normally do. Because of extreme fatigue, I limit myself in the amount of errands I perform in a day. It has taken me years to figure out my boundaries but I think I know exactly how much I can do at one time.
Feeling like I could conquer the world
But this particular day, I woke up feeling great and convinced myself I could conquer the world. When I showed my husband my list of chores he said, “It sounds like too much”.
I assured him I was capable of completing every task. And he reluctantly agreed to help me.
So off we went, making multiple trips to various locations. These stops included church, shopping at the mall, the grocery store and lunch with a friend.
I was so proud of myself because I completed every task. I did all the things I needed to do, with no problems. And I was feeling fine.
The weight of the day on my shoulders
But once I got home, I could sense the weight of the day on my shoulders. It was around six o’clock at night. That’s the time when I normally get tired and fatigued everyday. So at first, I thought it was my typical afternoon weariness. But then I began to feel a bit peculiar. I realized something was different.
I sat at my dinner table and rested. I stayed completely still for about three minutes, hoping to recharge. Once I recouped some energy, I began eating my evening meal.
Completely worn out
Then out of nowhere, I was completely worn out. I did not have the strength to pick up my fork or my cup. My husband calmly came over and did his own check to see if he could help me.
When I still wasn’t able to do it, he began feeding me. I was so embarrassed. I used my remaining energy to stop myself from crying.
After dinner, I was so tired I didn’t even take a shower. I went straight to bed.
My husband could have easily said I told you so. But thank goodness he didn’t. Besides I was already beating myself up for letting this happen.
I want to live without restrictions
I was diagnosed in 2000. I know all the MS 101 stuff. I’ve become an expert at energy conservation. I know I’m not supposed to let myself get that tired. But sometimes I want to be like everybody else. I want to live without restrictions. Not plan every move. Attend events without having to know where every bathroom is located. Not worry about if it’s too hot outside or if a building is accessible.
Respecting my limitations
But I know I can’t. And even though I hate MS, I realize I must also respect its limitations. So when my judgment becomes cloudy, I have to slow down. When I’m weak, I should ask for help. And when I’m in pain, I must take a break.
I just can’t believe, after all these years, I’m still learning how to live with multiple sclerosis.
Would it have been helpful to hear from others and their experiences when you were beginning your MS journey?
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