Life with Sensory Processing Disorder

Thursday, December 19, 2013

My Story


I’ve struggled with how much to say here, if I should come out with any of it. To be honest in my personal life only my husband and one other know everything. But the hope of finding help, helping others, wanting to talk about it pushes me forward. I'm sick of hiding. I am who I am and now that I know it isn't all in my head (I knew it wasn't but other people tried to convince me otherwise), there is a name for it, and others suffer from it, I need to talk about it.
I am sensory defensive, an avoider - I am hypersensitive to light, energy, touch, textures, temperature, heights, and especially chemicals, noise, and smells. As I get older I find my sensitivities are getting worse, not so easy to hide anymore. I bounce between moderate to severe SPD symptoms. I’ve always been super picky about everything, like things a certain way, don’t like my things touched, and need routine. I feel pain more than others do; things like a dental cleaning, a cold, PMS are almost unbearable for me. I have TMJ which can be very painful at times and I’ve read is common in those with SPD. I have the hardest time sleeping.
SPD is thought to be genetic, and in my case I believe it is. My father had an obvious sensitivity to noise, and my mother and her son have sensitivity to chemicals. Others say an injury, too much stress, or various other things related to the nervous system, spine, or brain stem can cause SPD. In thinking about my life I was born via C-section, had Scoliosis, cracked the back of my skull open at age 12, had an additional MMR vaccine in my 20s, and recently endured much stress during the deaths of a good friend, my father, and father-in-law. So I can't help but wonder if these affect my SPD since it is getting worse as I get older?
SPD often goes hand-in-hand with Autism, and having Asperger's Syndrome, which  is on the spectrum & now called High Functioning Autism Spectrum Disorder, I wonder if I have SPD worse than someone who isn't affected by AS/ASD? I feel for those who have Autism and are non-verbal with SPD; I can't imagine being in a world where you cannot change your surroundings, explain what you're feeling, or withdraw from overstimulation. I need to count my blessings each and every day. Something to remember: there is always someone worse off than you in the world.
Anyway, the sense that gives me the most grief is smell. I always smell things that others do not or way before they do. When I smell something my ears start to hurt, then my throat, my head, my sinuses. I get nauseous, faint, dizzy, flush, get hives, sweat, and then I start to panic if I can’t get away from it. Most smells affect & hurt me; perfume, soap, shampoo, toothpaste, incense, candles, air fresheners, body odor, bad breath, food, flowers, essential oils, laundry detergent, cigarette or pot smoke, deodorant, camp fires or fireplaces, anything chemical or natural. I think the only smells I can tolerate for a very short while are peppermint, lemon, cucumber, fresh cut grass, the ocean, and my cooking (I don’t cook meat or anything particularly smelly). PMS heightens all of my senses, but especially smell and I feel nauseous very easily by anything that smells during that time.
It is hard to live normally when you get sick from smell. You can't control what others do. In the past I just told people I am allergic to chemicals and anything smelly, but some still would not believe me. I have to ask people not to wear perfume, strong deodorant, or hairspray if they want to spend time with me, have me over, or come to my house. A not so nice person once told me he removed all his many candles, air fresheners, and smelly things before I came over. I knew he didn't believe me about my smell sensitivity, and when I told him I smell something still, I found he deliberately did not put away incense (even though it was not burning) and a few other air fresheners - he didn't believe I could smell them because he did not. I got really sick and head achy and he found it funny. He liked to put me down and tell me I'm crazy, suffice it to say he is no longer in my life, despite being a blood relative. I'm finding family is not always who you think they are, rather the people who love & accept you the way you are. I've just about given up doing things with those that don't know or aren't very nice about it, just not worth the effort. People can be such a$$holes. 
I have to use fragrance-free, low chemical, and natural products, and even then I have to read ingredients carefully and stay away from certain things. Even most fragrance-free products have a smell, some very bothersome. Often I will make my own cleansers, moisturizers, hair dye, make-up. One can get real crafty pretty darn fast and DIY when they need to! For years I ran my own online mineral make-up business out of my house. It was doing exceptionally well, too good in fact, I stopped because I no longer had time for anything else and wearing a respirator mask all the time hurt and was stressing me out.
 I'll write more about my other senses and how they affect me in future posts, as I could write a book on it!

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