A lot of people (friends/family/even some doctors) still don't really understand what I have/am going through. I don't blame them, a lot of times I look at my body incredulously and think to myself how can you be in this much pain or how can you have gone from laughing and having a great day to in tears and barely able to move in the matter of minutes. I figured it's time I tried to explain what having Complex Regional Pain Syndrome (CRPS) is like and clear some things up. I hope I don't sound like I'm putting others down or being mean in any way, just gonna attempt to explain from my perspective.

The basics: I am always in pain. 24/7..even on my best days. When I have a great day, it means on a scale of 1 to 10 (10 being the worst), I'm at about a 5. It's easier for me to move around and distract myself from the pain because it's not overwhelming. I hurt and notice the pain most when I bend over or overdo it (walking in a store for example) but it's not that bad. On average, I'd say I'm at an 8. If it's raining or going to rain in the next couple of days, I can tell without looking at the news, because my pain escalates and my joints hurt all over. Winter is the roughest because the cold and snow makes my pain worsen and I stay at a 9 most of the time. I'm healthy and look normal yet it feels like half of my body is literally on fire. My pills help with the pain but have pretty strong side effects. I'm nauseous and exhausted most of the time, but I have to choose. Would I rather feel blechy or would I rather be in less pain?

If I know I'm going to be hanging out with a friend or going to a park or any sort of "event" that I want to have fun as long as possible, I do as much as I can to lessen the pain. I won't eat for ~12 hours before going out, so that I don't have really bad stomach pain. I will stretch my legs a lot at night and lay down as much as possible so my legs don't balloon up (my legs/feet can swell to twice their size) but not exercise or else I'll be in a lot of pain the next day. I try to stay in a dark room so that my migraine doesn't last until the next day or prevent me from sleeping. I hope that I'm able to sleep that night but there's not really much I can do. Sometimes I am really lucky and get 12 hours of sleep but most times I get ~4 broken up every 45 mins or so.

Right before leaving my house the next day, I wait as long as possible before putting on my pain cream compound and my pain killers. Me being in a car immediately escalates my pain. I can be at a 5 leaving the house and shoot up to an 8 just from the vibrations in the car. And the car pain stays with me for hours. Now that it's winter, I have to wear leggings and socks whenever possible so I don't get frostbite, but that instantly makes me in a lot more pain as well. The pressure of the leggings hurt, but loose pants hurt even more because they are constantly rubbing against my legs. They feel insanely raw. The closest thing I can think of comparing it to is peeling off a really bad sunburn and then rubbing and punching it. Unless I'm not going to be moving at all in pants (like watching a movie), wearing pants almost always gets me in tears the rawness takes over half of my body.

I take off the leggings as soon as I can get inside the drs or stores. So I wear shorts, and people comment and judge all of the time. A lot of people say in a nice tone "aren't you freezing!?" and I just smile and say no. But there are a LOT of people who are very rude as well. In the past few weeks I have gotten "what a moron (both dad and daughter my age glare at me)", "look at her what an idiot *points*", "I hope she gets frostbite", "where's her mother?" "who does she think she is?" ...you would be shocked how many people are outspoken to me and care about how I dress as if it affects them. I got just as many comments when I was in a wheelchair as I do now. Every single person who I have retorted saying "I have a disease that makes it so I can't wear pants, but thanks for your concern" has backpedaled and get really uncomfortable saying something along the lines of "oh sorry that sucks". I try to cover up when I can but yeah, it's very painful and hard to think of/concentrate on anything besides my legs.

I understand why people don't believe me a lot of the time, I know firsthand how crazy it is that I am in so much pain 24/7. I know how soft my blankets are yet it feels like I'm being stabbed and intense burning. I know how frustrating it unbelievable it is that I can be moving easily and doing pretty darn good, to actually throwing up and feeling faint because the pain consumes my body all of a sudden. That I'll be making a joke and before I can finish the punchline I'm starting to fall because my whole leg gives out from pain shooting through me. It's frustrating. I do as much in power to make myself appear "better", to push my body and go to the extra store or push myself to laugh and appear happy when everyone else is. I feel AWFUL when I can't be near people because their laughing and screaming gives me migraines, when every little vibration causes me to be in tears after enduring it for 15 minutes. People are happy around me, doing normal everyday things and here I am trying to at least not be the "downer" of the party. To have fun and ignore the pain for once. And I know I will pay for it that night, and the next couple days. I will be more swollen than ever, have a hard time getting out of bed and just miserable. But I want to have laughter in my life, some normalcy, and I try to have it when possible without overdoing it. So if you see me laughing or looking ok, it doesn't mean that I am cured or not in pain. It means that I'm happy and am probably distracted for the moment from the pain. I try to have a positive attitude and enjoy life through it all, because I know I am blessed. I'm not typing this as a pity card, I'm trying to explain what nobody can see. People say to me "I'm so glad you're better" or "Are you still in pain? You look cured"..heck I even have doctors who touch my legs and forget now that I'm no longer in a wheelchair. I know you can't see my CRPS. But you can believe me.