About two months ago I had 5 grand mal seizures. I went to my second follow up appointment. I forgot my “Please don’t touch me” sign, much to my dismay. It was stuck on the back of my wheelchair at home. Sure enough when I LEAST expect it, while my heart rate is being taken, a woman gives me a good wack on the back telling me how much she likes me shirt. I take a moment just now to sigh… What do I say?
“You just caused me 3 days of pain!” Or “ I’m thrilled you like my shirt but you could have just told me instead of wacking me on the back!” Or “ For fuck’s sake why do I have to have a sign on my scooter that says DON”T TOUCH ME for me to just make it out in public for five minutes!!???” The nurse actually commented. She asked if people always hit me that hard, touch me, feel it is ok to pat me. My husband immediately chimes in that EVERYONE feels it is ok to touch me although no one in the history of his life has ever just come up and given him a nice wack on the back while complimenting his shirt. The nurse said quite empathetically that she believes if anything that looking at someone in a scooter so frail she would think they would not touch me. Nope. Not my life. So you think, well this woman was giving you a compliment though saying how much she likes your shirt. Nope. That is the victim in me that makes excuses for people that don’t deserve them. It is NOT OK to touch me! Which made me wonder… do I need to amend my sign to say, “ I have PTSD. Please do not touch me.” That would bring awareness right? Well I am not a fucking bumper sticker now am I ??!!! Then my daughter reminded me of my previous sign that said, “ I am allergic to perfume, please do not touch me, thank you.” It never stopped anyone. It gave them a reason to give snarky comments. It gave them reasons to tell me why they wore their perfume. It gave them a reason to roll their eyes. My aunt is a perfect example. My daughter drove me to a funeral and a funeral is a hugging place. I knew I needed my sign so that I was not taken off guard by a perfume fest. Aside from my PTSD and aversion/trigger of cologne I also have multiple chemical sensitivity which means I will get hives and rashes from fabric softener, perfume, etc. My daughter remembers my aunt reading the words on my sign OUTLOUD that I’d taped on my scooter, rolling her eyes, and walking away. Somehow it offended her that I was trying to make it through a funeral without having a rash or hives. My daughter is still mad about that. I had forgotten it until now, but now I am mad about it too!!!
I’m trying to protect myself and create a safe place for myself, put up some written boundaries to cover all bases while I am out in my scooter. As if being in a scooter is not hard enough.
So I get a good back wacking before my assessment even begins.
I had all of my updates, questions, improvements, and continuing challenges written on paper for the doctor.
Now my back hurts though. I am also reviewing how upsetting it is to be constantly violated by unwanted touches. I am upset at the fact that her hand on me knocked me out of my body and I know I will not remember any of the appointment. So my husband goes in with me…