That said, with RSDS/CRPS, things get tricky. As the sensitivity spreads up my leg (now into my hip), I constantly find that touch is very painful. Think about it, how many times do you pat someone's knee, steady yourself on their leg or accidently bump someone gently but unintentionally? It's not a mallicious act, I don't know anyone who thinks to themselves I'm going to go around and touch people to cause them pain. In fact, if you don't know me well, or don't understand my type of pain and nervous system issues, you are wondering why I'm even writing about touch, again.
In RSD, there are several things which go wrong and several types of symptoms someone with the disease can experience. Only a few of them are relevant here. The most common symptom is pain. It's most commonly described as a burning pain, although for some of us, it's a cold burning pain, maybe like the pain of grabbing a bunch of snow with no hand protection. For many of us, the next symptom is sensitivity. I'm sensitive to touch, pressure, texxtures, cold and sound (or the vibrations caused by sound). This symptom is known as
it's a sensitivity to something that is not normally painful. For me, this includes putting on my socks, pants and shoes as well as touch. Even a light brush with the finger is painful. Before I became ill from CRPS/RSDS, I would have thought this was crazy. In fact, I didn't report the symptom until a doctor asked me and even then, I was extremely hesitant until the doctor explained that it's not my fault that this happens.
So anyway, now that I have this sensitivity to touch, I've been forced to figure out how to deal with it. For most of the time I've had CRPS/RSDS, I have felt uncomfortable telling people that their touch hurts. It's an odd symptom and I knew that people weren't trying to cause me pain. I wrote about the problem of painful touch, I told people about it when they asked about my pain but I never told people they were causing me pain. My friends and parents knew and often I'd have someone who knew about the touch issue sit on my left side to protect me. My friends and parents were also good about helping me out with the problem when it happened. They often warned people or even stopped them from touching my leg if they saw it happening. But because I have a hard time communicating when I'm in pain as it's happening, I rarely said anything myself.
That is, until this summer. At one point during convention, someone touched my leg. I knew that they'd simply forgotten about the pain touch causes me, but my relationship with this person is strong enough that I can simply ask them not to do that and it's okay. So I simply asked my friend not to touch me there again. The sky didn't fall down. The next week when I was receiving the Ketamine treatments, everyone was so good about not touching my leg without warning that it reinforced my new self-advocacy. Over the last month, I've been working on setting physical boundaries. I've worked at communicating with others so they know what hurts and what doesn't.
I think people feel bad when I explain that what they've done causes pain, but so far, everyone has gotten over it. I've also noticed a paridoxical response. People are more willing to touch me in other ways, giving a hug, shaking a hand. I think knowing what they can do and can't do helps. If they're not sure, they just ask. In a way, setting a clearer boundary in a respectful, non-threatening way has taken down barriers I wasn't even aware of. As school starts up again, I'm going to work on setting those healthy, respectful boundaries.