Here we go, another soul revealing confession post. You ready? Good. I may not be, but I’m going through with it anyway.
Certain time periods and areas of my life are painful, and some fill me with shame, guilt, or anger. The worst of those being anger. Shame and guilt I can handle, anger is one of the emotions I especially dislike feeling, because I don’t know how to process it. I rarely feel it and if I do, it feels unnatural to me. I’m not an angry person, I don’t like unnecessary confrontation, but do have a backbone. I’ve started walking away, asking for time to think when I’m mad, but I still say things I don’t mean or that are misunderstood. Anyway, that isn’t the purpose of this post, I’ll get to that in a bit.
I have two conditions: Fibromyalgia (Fibro) and Complex Regional Pain Syndrome (CRPS or RSD). Both are painful, but there is a difference in the kind of pain. The Fibro makes me tired and causes an aching feeling in my joints, and in my body overall. The pain is intermittent, it comes and goes, some days it’s bad, some days it’s not. Fibro is not curable, and can be controlled with pain medication, getting enough sleep, and staying active. The CRPS is also not curable, and I wasn’t diagnosed for two years, which made the treatments that may have sent it into remission worthless. CRPS is a progressive disease and can spread to other areas of the body, and into internal organs, which terrifies me. It is a constant pain, on some days it burns, on others it is sharp or dull, or it can be a steady throbbing in the affected areas. As a weird plus, I can tell when it’s going to rain or snow, and I’m more accurate than any meteorologist on the planet (99.9999998% of the time I’m right). I’ve had CRPS for over twenty years now and manage it as best as I can with medication.
There is one type of treatment I have not been able to explore, but it would require going to New York once every three months. Being a single mom, with very little financial help from my son’s father, seeking this treatment is not something I can do financially. Also, arranging for my son to stay with his father when it’s not his designated weekend is typically a long process. So, that’s out. I’ll stick to the low level narcotics I’ve been taking, and eventually bite the bullet, and ask for something stronger when I absolutely need it. Doctors have become cynical about giving out medication, and to be honest, I don’t like feeling doped up. Narcotic abuse has become a problem to the point that the people who NEED them aren’t able to get them, because of substance abuse. That’s another topic, though, and I’m straying from the intention of this post.
Any type of trauma can cause CRPS to spread. I’m not supposed to get a sunburn, get a bug bite, get tattoos, do anything that could cause me to injure myself, or to have children (I’ve done all of this anyway, because fuck that). I have it in my left arm, my left knee, and have recently started to feel it in my right knee. No one knows much about it. All they know is that the nerves are somehow broken and send pain signals to the brain for no reason. There are days I don’t want to get out of bed, but I always do. I have to, I push through how I’m feeling, and do what needs to be done. I got that from my mother, that woman used her shoulder even though it hurt for months, then she found out that the muscle used to lift your shoulder had detached itself from the bone. The doctor told her she shouldn’t be able to move or lift her shoulder, but they don’t know my mother. She’s a remarkable lady. Those close to me know when I am having a bad day, but most people I come into contact with on a daily basis don’t know that I have it at all. When I was first diagnosed I was open about it, but people reacted with pity, and if there is one thing that I hate more than being lied to, it’s being fucking pitied. I would rather not talk about it, than have to see that look in their eye that screams “You poor thing”. It pisses me off, and as discussed earlier I don’t like being angry or getting involved in unnecessary confrontation. In order to avoid all of that, I just don’t tell people. It works, but it’s also hiding a part of myself that has made me the way that I am. I hope that makes sense, it does to me.
People can be assholes too, though. Looking at me, you would never know there is something wrong. I limp when I walk sometimes, I may hold my left arm to my side when I walk on bad days, but other than that I look normal. I got yelled at by a man in a parking lot once for using my handicapped placard. He embarrassed the hell out of me all because I didn’t “look” handicapped. A complete stranger accused me of taking someone else’s placard because I was “lazy”. I know he felt like an ass when I showed him my ID card stating that I was disabled, but he didn’t apologize, he just walked away as fast as he could. That guy was a dick, and was so wrong to do that, but I cried when I got home anyway.
Now to get to the real reason I’m writing this all down. My birthday is coming up, I’ll be 34 in 20 days. I’ve been thinking about what my greatest accomplishment has been so far in my life. Living with pain has certainly been one and was the first thing I thought of, but it’s not my biggest accomplishment. My biggest one is raising my son. He has been the greatest gift I have ever received, and is the greatest gift I can give to the world. I think I’ve done a pretty good job of raising him. He is kind, compassionate, curious, has a love and acceptance of people I’ve never seen in a seven year old, a tremendously big heart, and a willingness to help others. My greatest achievement is him, and while I could list off other things, when it comes down to it, the impact he can have on others is the biggest contribution that I can make to the world. He can impact so many, and hopefully his children will do the same. One person can impact millions. Think about that. That’s the message I’m trying to pass on here. That’s why I’m writing this all down. Be kind to one another, you never know what another person is going through. Looking at me, you wouldn’t know that I’m in pain, but I am and I still try like hell to be kind and grateful for each and every day that I’m alive.
Smile at strangers. Make funny faces at babies in the checkout line. Buy someone’s lunch when you are ahead of them in the drive through. Hold the door open for someone. Write an unexpected note to someone you care about. Shoot, send someone a message on tumblr expressing things you like about them or something you’ve noticed about them. It doesn’t take much, just a small effort, and in doing so maybe that person will do the same thing for someone else. Do something nice for no reason, without expecting anything in return. The simplest things are often the most effective. Kindness is easy. Go do it. You never know how much you can impact the world just by doing one small thing.
Anyway, if you’ve read all of this, thank you. It’s hard to talk about this, but I felt the message of kindess is an important one, especially now. Go out and try it, you never know how many people’s lives you can change for the better.
For those interested you can donate to CRPS research by clicking here. Each year when asked what I want for my birthday I tell them to make a small donation to RSDS.org or to the SPCA. If you do so, I promise I’ll pay it forward in some way.