Oh, Just the Regular
People often ask me how I am doing, which is fine, I know they are concerned and I respect that.
What my normal response is: “Oh, just the regular.”
What people do not know is my regular changes weekly, or even sometimes daily.
No off switch with PPMS
Living with primary-progressive means there is no off switch. There is a knob instead. In time that knob will crank up one notch. It will deliver new pains, new feelings, and new levels of sensations that will go unrivaled.
Living with this knob, hearing the silent clicks as it works it’s way up. Knowing that there will never be an end to its hunger makes you quiet, speechless. How can you tell people that it’s tearing you apart? That your fingers shake from the power it has on you. To live with a beast that has no rest.
We keep quiet
You want to talk about it, to be truthful. But you can’t, you have to keep it inside. Why? Because it never ends and it’s up to you to maintain a healthy, comfortable space around you. People may care deeply for you but they have limits and they want a healthy, comfortable space too. So we keep quiet, even though you want to sit up and scream as loud as you can.
So when people ask me how I am doing I look them in the eyes, I give them a warm smile and I simply say:
“Oh, just the regular.”
Does anyone experience worsening symptoms with cooler or cold weather more so than warm or hot weather?