My Life & MS

The first five years were supportive and livable. Now, I’m too tired. I’m too tired to care about much. My marriage is just us passing in the hall. My kids visit when they can, but no one wakes mom when she’s asleep – even though they’ve been told 1,000 times (and have seen it) that I can fall asleep in less than 10 seconds. Why NOT wake me? Then I know you were here to see me. I may get a conversation. I will get a hug!

Friends don’t come because my husband is too quiet, and we can’t disturb him. Shhh…

I could go out… that requires great planning. I need someone strong to get me down the four stairs to our driveway. I need a ride, and someone willing to get a wheelchair in and out of the trunk and push me around. They might, but who really wants to put that kind of burden on a friend. (OK, there’s a few friends that I would ask – EXCEPT…)

Before any of “that” can truly happen… I need my hair done, a shower, my nails done, an outfit chosen… a shower, in of itself, is a full-days project. I can’t do it all in one sitting – I’m too tired, too weak. It has to be broken into 1/2 with a nap in between + one after. My daughter will do my hair and help me dress IF she’s free then – but if she has an engagement, that will always come first. (Even if mom hasn’t been outside in 7 months). I digress.

BUT, all of that has to happen IF and only IF, I can muster enough energy and will-power to actually go. I cancel more often than not…the whole is just TOO daunting! Most people just think of going to they symphony, pick out a nice dress, get ready, and off they go – OH, how I wish for those days to return!! They won’t. It’s only getting worse. It’s PPMS, to be expected…depression, to be expected.

BUT, family pretending isn’t, and that’s what hurts. They’re there out of obligation. Sure they love me, but they’d rather be doing whatever fun thing they’d had planned…and sadly, I know it.

This makes me care less. Why shower twice a week? No one’s coming over? Why have your aide do your nails? Who will see them? Why straighten your hair and make it as pretty as a picture? No one will see it – not even me!! I’m in a wheelchair, and have a 3X5 mirror that I use for make-up (LOL).

I just can’t figure out why I’m still here most days – I’m useful to no one. Helpful to no one. Meaningful to no one. When I leave earth, they’ll mourne for a few days and get back to their regular lives because I wasn’t part of it anymore – except to mess it up.

I HATE THIS DISEASE!! OH HOW I HATE IT!!

I had a great life! It just left. Now, I’m left with whatever this life is. I’m not sure I’d actually call it a life.

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