No, seriously. I wish someone would have told me some of these things before I had to find them out the hard way. And I think it may give people motivation to AVOID the chair as long as possible, if that’s even realistic. But that is the first thing you should prepare yourself for:
– You may always wonder what you did to get yourself here, or ask “why me?” Those thoughts are normal. Frustrating, but normal. Try to look forward, not backward. Good advice! Maybe I should take it, huh?
-There may never be a day when you are not angry about how bad this sucks … but what was that advice again? Yep, I know, the windshield is bigger than the rearview mirror. But try to move on. Accept the occasional pity parties and go forward.
-Hope others cut you slack and understand that this is a BIG loss to adjust to.
-While sitting down may look enjoyable to some, when you do it 24/7, you may get a little testy to comments like, “Oh, I sure wish I had one of those today!” (i.e. a wheelchair, scooter, or handicap parking permit). But at least you are not being ignored 😉
-Bright side. Always look for a bright side. Sometimes it’s still pretty darn dark, but realize something is better than nothing. You can find the bright side if you look hard enough.
-First sign of a pressure sore? Treat it! Nothing to take lightly (trust me).
-Purple is a pretty color, but just not for legs that hang down all day. Always be mindful of and kind to your circulatory system.
-Accept that people may think they are helping you with preventative medicine (“Um, no really, I want to keep my toenails!!”), or by offering you unneeded help (buttoning your coat, carrying things, etc.). However, they never had a handy list like this telling them how to deal with the disabled.
-Hugs will NEVER be the same, but on the bright side, at least you’re getting hugged.
-It will be okay. Different perhaps, but it will be okay. Or, at times, even better than okay.
-You will never stop hoping for a cure. That’s the reality, but how are you going to make it better? After all, YOU are the one in the chair. Be your own best advocate.
Make it better.
Thanks for letting me get that out. I hope it helps. Really, I intended this rant to benefit you. But do you have something to add? Let me know, because truly we are all in this together, even if at times you feel all alone.
and do not forget to continue to exercise and stretch – as Patti’s neuro once remarked there would be nothing more cruel than to one day in the future find a cure for MS but discover your muscles had atrophied from non-use in a wheelchair.
Caregivingly Yours, Patrick
Rants are good medicine if they are accompanied, as yours is, by a way to get out. I follow Patrick’s advice to exercise and stretch. Indeed, I probably do more exercising on a more discplined basis than I ever did when I was unimpaired. Of course, I need it more.
Jen, I giggled at the section about comments such as, “I wish I had one of those…” Whenever I’m using my scooter, and someone says that, I stop and say “Okay, but you have to take all the junk that goes with it.” They’re usually speechless then. So, I just smile, and say, “Something to think about, huh.” I don’t mean it to be nasty, just trying to raise awareness.
Peace,
Muff