So, we must expend resources explaining to the able-bodied why we need to rest, why we might not be up for a conversation, why. . ., why . . ., and so on. And, when MS changes the rules, we must explain again.
Dancing with MS - MS is a control freak
Thank you for putting it into words so eloquently, lazscott!
Full text of the entry pasted here, with permission:
"MS is a control freak" by lazscott
Definition:a "control freak" is one who expects others to do things the way he or she wants them done for no more valid reason than "because I said so," even though such a person might not always follow the stated standards. Such a person may try to be subtle. "I'm only trying to help you." Or, "It's the best thing for you."
MS is not concerned with subtlety. If it decides it is time for its subject to fall, the person falls. It can decide when it wants the bladder to be voided; even though there may only be a thimbleful of urine, when MS commands, the person better snap to. The person may want to remember a fact, perhaps retrieved only the day before, and MS will make the person struggle to locate it and call it forth. MS, the skilled control freak that it is, changes the rules and relocates its boundaries without informing its subject.
The person living with MS cannot escape it--can only "manage" this control freak. What an unsuitable word, "manage." We must predict, anticipate, plan and prepare for the predictable and the unpredictable.
Others cannot see this control freak. So, we must expend resources explaining to the able-bodied why we need to rest, why we might not be up for a conversation, why. . ., why . . ., and so on. And, when MS changes the rules, we must explain again.
We are always "riding this bull," and we need to know when it might buck and be prepared for when it does so unexpectedly, sometimes painfully, sometimes publicly. MS does not care.