Changing needs and how to deal.

So my friend and I were talking about this at work the other day, and it got me thinking. How does one effectively communicate with a friend or family member you know has changing, degenerating disease? I deal with 2 sides of this very topic every day. Having a degenerative disease myself, and working every day with some amazing folks who do too. Sometimes I forget how awkward of a situation that can be for people who don't deal with this every day. And so, this post was born.

Recently I went to the doctor after pain remained after my last nerve block. I was expecting to hear that my knees were messed up a bit, something I've known for awhile, but instead I heard something very different. My doctor explained that my muscles were in much worse shape than any of us really thought and that for my "bad days", I should consider starting to use a wheelchair or walker. I wasn't prepared for that at all. Hubby wasn't with me since I I figured it would be a very straight forward appointment. There was a lot of crying. It's not just a piece of equipment, it's what that equipment symbolizes.

I won't go into whether or not a wheelchair is in the cards right now...that's for another post, and frankly, I'm not interested in going into that at this point. What I can admit is that my mobility is changing. My needs are changing. I can feel things I didn't feel before. I struggle more than i did before. But where does that leave my friends and family? How do you address someone you know has changing needs? Well, here's my list.

- Please do not assume that I can or cannot do something. If you have a question, just ask. Better to get a straight answer rather than embarrass yourself, or me.

- Don't be afraid to ask questions. It's confusing. RSD is different for every single person who has it. It's also fairly uncommon. In fact, asking me questions can be a really cool way for me to see that you're interested in what's going on with me. It's appreciated since sometimes you feel so alone when you're dealing with something like this.

- Don't be offended if there are a few occasions I don't want to talk about it. There are good days and bad days. Thankfully the good outweigh the bad. But there are days, especially when I'm in a lot of pain, when it just frustrates me more to have to discuss it. Don't take it personally. I seriously applaud you for even asking.

- Please do not look at me as if I am broken. I think everyone appreciates understanding and compassion, but it can be a slippery slope, and without knowing it, you can begin lamenting all of things the person can no longer do. I assure you, I'm well aware of the things I've had to give up or stop doing. But who wants to dwell on that? Sometimes I can't get away from it, and it's all I think about. But I'm not asking for sympathy. A simple "that sucks" or "I can imagine" goes a lot farther than you think.

- Want to really impress me? Do some research. As I said above, RSD (and a lot of other neuromuscular diseases) are very confusing. Doing a google search to look up the general things I deal with mean the absolute world to me. Occasionally, my family will send me articles they've found about chronic pain or muscle weakness. Some friends have posted stories about treatments and such. That gets to the core of me. There's nothing that touches me more than knowing someone I care about has taken time out of their schedule to think of me or do something to try to pass along some more information to me. It's super cool.

- If you know hubby, ask him how he's doing. I'm an insanely lucky woman. I married my best friend in the whole world. I was diagnosed after we were married (he didn't know he was signing up for this) and we've both been a little taken back at how quickly all of this as progressed. He's a 30 year old carer giver for a disabled wife. That sucks. It sucks bad. He's always having to be the optimistic one, even in the hardest of times. I can only imagine how difficult that can be. So, if you know him, just ask how it's going for him. He's still the same dude, just with a lot of extra stuff in his shoulders. A kind word or something will likely make him feel like a million bucks.

That's just my list. I'm sure there are plenty of people, even with my same disease, who wouldn't agree with the things I've said. But it's how I work, and these things help me cope with the massive pile crap that is RSD.

So that's it. Do you have any questions? If so, you now where to find me! :) thanks for reading, friends!!