"What do you do all day?"

[agate]

I've heard this question so many times that I might as well ask it here and give an answer to it. People do wonder what someone who doesn't work but lives on Social Security could possibly be doing all day.

"Don't you get bored doing nothing?" is another way the question might be put.

The answer is that I do work. I work pretty hard.

For one thing, MS slows me down, and so the tasks everyone does--housework, a bit of meal preparation, laundry, tending to the cat--take me much longer than they'd take somebody without MS and arthritis.

But for another, when I learned I could receive Social Security disability benefits at the age of 40, I was very surprised. A lifeboat had just come into view. For a couple of years I'd been getting less and less able to walk or to see or hear or do most things, and I was terrified. I had no idea how I would survive because I'd lost my work-at-home job and knew I probably couldn't work full time any more. Or even part time--I'd tried that for nearly a year and had more falls than I can count, just getting to work and back.

So when the neuro told me I could apply for Social Security benefits, I couldn't believe it, but when they came through for me a few months later, I knew this was real.

I was being paid a monthly "wage" so I could take better care of myself.

My monthly Social Security check is my salary. I have to spend large segments of my time (a) taking and dealing with medicine, (b) in the bathroom, (c) dealing with special transportation arrangements for wheelchairs, and (e) going to medical appointments. Then there's all the time I spend just trying to see and hear things that are difficult to see and hear, reaching for things with special gadgets, cleaning up the things I've dropped and spilled.

And there's the time and effort it takes to bring things to me so I won't have to make a trip somewhere. Groceries, postage stamps, prescriptions, hardware items, gifts--everything gets ordered in. By mail, UPS or FedEx, or a delivery person. Traveling anywhere with a wheelchair is a project I prefer to avoid.

I want to laugh if someone asks, "So what do you do all day?" as if I'm sitting around waiting for more soap operas to be on TV.

Except for an hour of news and very rarely a program I particularly want to watch, I don't watch TV. I don't have time.

This MS is a stern taskmaster.
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MS diagnosed 1980.

Avonex 2002-2005. Copaxone 2007-2010.