But I Don't Look Sick...

The worst is when you're fighting a flare and you feel alone. Feeling like you have to justify the pain because you don't "look sick".  My family sometimes makes comments that make me think I'm faking it. Lately, I have tried to explain that I am faking it. For years, I have faked feeling well. People with a chronic illness want to feel "normal", and often downplay pain. I know that I have done that up to the past year, when I realized that I could no longer mask the pain.

Today, my sister put all this stuff on facebook about me being a freeloader. Yes, I live with my family. But, I do everything I can to help out. Mostly, monetarily. It just angers me because she has no clue what I'm going through. My doctor took me off work for 6 weeks while I receive my Remicade infusions. I still have daily pain. I can't walk much without having to rest or even take a nap. I feel like I'm at the end of my road. Other people were responding to the post she made, not one person having any compassion for what I'm going through.

I have my little sister, that's 15, helping me since she's out for summer break. Together, we cleaned the house and made dinner. The laundry is nearly done. But, my other sister doesn't see that.

People don't need to feel sorry for me, but don't make me feel like I need to defend myself. Or, that I need to show you my pain. It is real. I wish I didn't have RA. Do you know how much I wish I could run? I'm jealous of people that can run.

I Need More Of Days Like This...

I feel like today was a relatively good day. I woke up knowing that I did not have any commitments or things I HAD to do. That in itself is just so stress-less. Sleeping in felt great. I took my time getting ready for the day. I decided to go out and get a pedicure. I thought if I felt well enough, I would stop at Ulta after and pick up a few things. 

My pedicure was so relaxing. I love the foot massage and just sitting in the massage chair. I felt good enough after to venture into Ulta. I picked up my shampoo and conditioner, and even a new eye liner. After walking around the store a bit, and standing in line for awhile, I felt like I was ready for a rest. I came home and rested my legs and shopped online for a few hours. I decided I needed new summer clothes for my trip to DC for the 4th of July!

I watched some tv and spent time with my family for the rest of the day.

It was nice to feel somewhat normal today. I only took one pain pill. I'm realizing the balance between normalcy and taking care of my body. Rest is so important. I need more of days like this.

Thing NOT To Say To Someone With RA

There are a lot of things that people say that often hurt my feelings. Especially lately, with my RA symptoms being like a roller coaster. The unpredictable symptoms sometimes makes me feel like people actually question my actual pain.

"Oh you're just in pain, it'll go away"

I wish I could hand off the RA stick to people, just so they could feel what a flare feels like. Sometimes, trying to explain it doesn't do any justice at all.

"I can't do anything for you"

Yes, people can actually help. With a full on flare, I need help with the daily things. Making my bed, maybe even unhooking my bra. These may seem like little things, but the energy it takes when your hands hurt is just crazy.

"You were fine earlier"

Sure, that may be true. But, I honestly cannot control the symptoms. They come on when they feel like it. These statements only make me feel like people think I am lying.

"Why are you walking like that?"

Believe me, I do not think limps are cool. If I'm limping, it's because I am in pain. I'll probably try to downplay it,  but mostly so I don't hear one of the other above responses.

"You're not better yet?"

It may be surprising to some people, but RA is not like the flu. It's not going to go away. Unless you know of a cure that I don't. And believe me, I WANT to be better.

"Why are you hurting, what did you do?"

What did I do? I didn't GIVE myself RA. I did not injure myself. Granted, there are times that a flare could be brought on by doing too much. I still don't think the blame should be pointed at me for wanting to try to be "normal".

"You're tired, oh I am too"

Ha! Do "normal" people have any idea what autoimmune fatigue is like? Really though? Some days I could sleep close to 12 hours and feel like I'm crashing at work the next day.

"My body hurts, I feel like you"

You feel like me? Step in my shoes for a day to understand the struggles I go through. Have you ever struggled trying to open the toothpaste? Does it hurt you to drive because gripping the steering wheel kills your stiff hands? Yes, you may have pain, but you are not like me....unless you have RA.

I think the main reason so many of these comments bother me is that I've always been open about my RA. I've had RA since I was 5 years old, nearly my entire life. The disease is not new, neither are the symptoms. THAT is why people should not act surprised if I'm flaring. I never want pity, NEVER. Just understanding. I talk about my RA often because I want people to understand it. I sometimes try to tell "normal" people that it feels like after a intense work out, with having the flu. But, only it lasts just about every day. I'd much rather welcome questions than feeling people question my symptoms like they're not real.