My skin reacts to things. I get a symptom and it’s a flag. Ever since I was a little girl, my feet would swell from walking in the weeds so much that I couldn’t walk. I got in trouble for that.
I also get cuts on my legs up into my vaginal area. They bleed.
My legs turn out and my hips hurt. This is still from the car accident (6 months prior).
I get this weird eruption on the top of my head. My hair fell out with it. It was painful, sore, didn’t want to touch it. It was like you could stick your finger right through my brain. It was right at the fontanel closure.
When I press on that spot I feel unhinged, disconnected, like I’m floating. If I look in the mirror when I touch that spot I can’t tell the difference between me and my reflection. It feels like I might faint, a surrealness.
They thought I had epilepsy. I couldn’t tell between night and day, had no concept of time and space. At twilight I couldn’t tell if it was sun-up or sun-down. To know what day it is I need good hints.. I always have to ask, “is that real or not?”
In grade 5 the skin peeled off my nose from eczema. It was like the top of my head. I get little bumps all over my arms…they become red and itchy. Sometimes my arms swell from it. It used to be all over.
I get open sores around my nipples. They looked like cigarette burns, up and down, red and sore. I passed out once and the paramedics thought I was being abused. Now I have them on my belly, for the last 3 years, round, itchy little blisters. They’re also on the top of my feet and the burn. They get large – 3 inches across. The eczema acts up, nickel irritates it. I get eczema behind my ears and on the left side at the hairline. It starts on the left side then goes to the right. It can dry up and then looks okay. It goes through cycles.
I feel constricted by rules. Everything has to be done the same way. The end result – it doesn’t matter. I feel, “is there a rule I didn’t get?” I do something backwards and then I wonder if it’s a conspiracy, that people know something I don’t know. I will always be able to take care of myself, figure out what works best for me. I help myself.
How does this condition affect you?
It’s a chink in my armour. I’m not prepared. I wore a swimsuit in public only once. It prevents me from interacting. There must be something wrong with me. I feel shame, like something is wrong, my body is dirty. I feel powerless. When it is on my face, people would see me as not right, a mess, not good enough. If you’re ugly it’s a reflection of who you are. I don’t engage. The barrier is too big to overcome to see who I am. It has interrupted a whole lot of things. I stay in dark rooms. I never showered with the lights on. I avoided sunny places, I didn’t want people to see me. I also want to sleep a lot and feel better in a dark room. All I wanted to do was eat fruit.
I lost my memory twice. In grade 2 I had to be completely re-taught. When my parents divorced I lost a whole year. I have had four nervous breakdowns.
I remember sitting on the step, crying for no reason. When I said anything it came out like Russian. I was completed detached from memory and language. No matter what I said no one understood me. I was alone, there was no communication. I liked earthworms and wanted to take them to school with me. I didn’t want to play with anyone. All I did at school was watch the tethered ball go ‘round and ‘round, that’s all I would do.
I was lying in a red canoe with a man on a lake in spring. I saw the sunshine and trees. I knew him, was comfortable. There was a connection. We were talking and laughing.
I am not well-connected to my Mom. I don’t like being cuddled. Hugging with holding bugs me. I don’t like to be overpowered or sit with people in a closed space. Swimming in pools with people is like sitting in sewage. People soup with no clothes. It’s disgusting, repulsive. I wish I could enjoy hot tubs, hanging out on the beach. It prevents me from going water-skiing with my boyfriend and his family.
There is usually a dog in my dreams. My imaginary friend was a dog. The two happiest times in my life have to do with dogs.
I dreamt that everything was purple and I gave birth to puppies by throwing up in a toilet.
I dreamt I was in front of a big, stone building, a raised green lawn, stone steps. I am ascending or descending stone steps often in my dreams. I was seeing the Pope and the Cardinals in the stone building.
I have dreamt that my face is being blown off.
I dreamt that I was coming out of an elevator. There were people in a helicopter. I had had surgery, changed my face to someone else’s face. They come after me again and shoot that face off, too.
If I dream that I’m dying or in surgery, I feel calm. There’s a calm feeling if I’m dying. I don’t feel bad. There’s an end, things will be fine.
To deal with things, I sleep a lot. I have short naps and dream heavily. I miss not dreaming when I’m too stressed out. That’s my first weapon of defence – go to sleep.
I used to sleep in the dark on the cold floor behind the bar in the basement at my Grandmother’s house. There is this weird exhaustion, no reason for it, in every single cell, in a big pit, I can’t see the end of it.
Sometimes I feel like I could faint – maybe a seizure. I smell bleach when that happens. I sit down or go to sleep. I slept one time in a back alley when that happened.
If I have one or two drinks then I have to sleep. If I have two glasses of wine I can’t cope.
I get it, don’t have good control of it. When I was young it was really clear. I thought they were waking dreams. I saw an accident and the next day it happened. It frightened me. It was exact, clean, clear.
I get a migraine aura. It’s a numb feeling in my feet. The insides of my feet aren’t right. I’m not connected with the earth; I’m hovering. They’re tingling like there’s no circulation. I smell bleach and see very bright colours.
I lost my colour vision when I was sick. Everything was hazy – it is beige? green? gray? I got colour sick on things – nauseous, couldn’t concentrate, like motion sickness. I got tired learning a whole new language again.
My taste was crazy for awhile. Everything was so much more, colours, tastes.
My period is regular, not overly heavy. I get tired with it. My whole body would fall out and my feet were lifting up off the ground.
If someone scares me my feet feel like they’re lifting up off the ground. It’s an anxious vibration. My mind is not going where I want it to go. Frazzled, staticky, deep inside something’s trembling, cold, nervous.
Someone scared me about an hour ago. My feet feel like I’ve been sitting on them. Everything trembles inside.
I get attacks of the tremors, can happen at any time. I get it in the late afternoon or evening from energy work, or if I stay up late. Then I can be up for the next 3 days with tremors. I can’t flex my feet to walk from tremors in my legs and I fall into the mirror. It’s a hypnotic state. My eyes roll back. I get thoughts behind there.
If I see someone get hurt I feel it at the base of my spine. I feel it rising, get the shakes. I can’t watch the news, dinnertime TV. Breakfast TV is okay.
When I’m vibrating I’m not able to move, like a hummingbird or the helicopters in some of my dreams.
I don’t like to eat. I find it a nuisance. I put something in so I can function. When I’m eating well I am more flexible, not as dense. I don’t feel well when I don’t move. I was treated with cobalt for low thyroid. I use Rescue Remedy for tremors. I get waves of tremors. I can take off. They are crescendos, keep going. Makes me want to scream. I feel warmer when I scream. They do take off and are hard to stop once they get going.