Life with Sensory Processing Disorder

Tuesday, December 24, 2013

Ugh

 
We received some Christmas gifts via mail yesterday. Christmas is supposed to be a happy time and receiving presents should be fun and exciting, so I hate that this is an issue. While the contents/wrapped gifts of one package weren’t smelly, the packaging; interior of the shipping box, bubble wrap, paper, cardboard was. Extremely. I’m guessing like some type of strong potpourri? So much so I got an instant throbbing headache, earache, started sneezing, eyes hurt, throat swelled up just opening the outer box. I had to take the box & packaging outside, leave the room because I hurt so bad due to the smell, and wash my hands. The discomfort lasted at least half an hour. Thankfully the wrapped gifts do not smell and we can put them under our tree. I truly appreciate the thought & any gifts I receive, but boy does it hurt when things have an odor. L
 Sometimes I wish everyone I know knew about my SPD and *respected my need for non-smelly things*. Although I have told some that I am allergic to smells and anything chemical, but they forget or don't care. This happens more often than one would think. Birthdays & Christmas in the past I’ve received gifts like perfume, scented lotion, soap & bath sets, a lavender stuffed eye pillow, scented candles, clothing with a chemical smell. I struggle with if I should tell anyone, but don’t want to be rude, so I say thank you and hope that next year I won’t be bombarded with odors that hurt.

Monday, December 23, 2013

Tips to Prevent Holiday Sensory Processing Meltdown


With all the noises, smells, activities, crowds, chaos of the holidays, it is pretty easy to get overwhelmed, even if you don't have SPD. But for those who do, it can be unbearable. So here are a few of my tips on how to prepare and get through...


  1. Qi Gong - the morning of any big event, I make time to squeeze in some Qi Gong. Holistic doctors believe those with SPD have blocked Chi. My favorite practice is by Lee Holden; Qi Gong for Stress.
  2. Mantra - choose a mantra that is comforting to you and repeat it in your mind throughout the day/event. Some I have used; it is not about me, it is what it is, I can do this.
  3. Deep Breathing - blow hard through open lips, then inhale deeply from your nose. Imagine you are breathing in positive energy and expelling negative.
  4. Good Posture - it is important with SPD to stand straight & tall for your spine & nervous system.
  5. Checklist - have a checklist of things to do, remember, say; so you are prepared & confident.
  6. Music - surround yourself with calming or uplifting music. Whatever makes you happy and relaxed. Mozart is often recommended by doctors & OTs. Have noise cancelling headphones with you at all times.
  7. Loved Ones - surround yourself with those that love you and accept you as you are. Bring a friend or family member with you to any event in which you need support, understanding, or someone to talk to.
  8. Animals - if you can bring a pet or pet an animal, do so for immediate calming.
  9. Solitude - don't be afraid to step outside for a breath of fresh air or escape to a dark, cool room alone for a while to center yourself and breathe.
  10. Positive Thinking - remember why you are celebrating and remember it only is but once a year. Try to pick out the positives in your situation and find some enjoyment in your day.
  11. Laughter - if something goes wrong or not the way you planned, try to laugh about it. Find something to laugh about.
  12. Control What You Can - wear layered tag-less clothing so you can remove something and avoid getting overheated, or put on a sweater if chilled, have an exit strategy, or if you are holding an event, be sure to list a start & finish time on invitations so guest don't stay longer than you wish.
  13. Drink - I am certainly not suggesting you get drunk, but if you like, have one drink to help you relax if you are of legal drinking age and not on any medicines. -unless alcohol overstimulates you or makes you ill, than ignore this tip.
  14. Japa Mala - bring along a mala or rosary and say a prayer or mantra in a private room to clear your mind.
  15. Fidget Ring - wear a spin or fidget ring, or have any type of fidget in your pocket that you can stim to your hearts content without bringing any unwanted attention to yourself.
  16. Skin Brush - in your purse or pocket keep a Therapressure Brush and do some brushing and joint compressions in a room to yourself - repeat every 2 hours.
  17. Rock/Swing/Get Upside Down - if available, rock in a rocking chair, swing on a swing, or in a bedroom lie down with your head off the edge of the bed upside down or do a headstand against the wall.
I will be hosting a small Christmas dinner this year. I already have my checklists and shopping done. Today I am cleaning and wrapping presents, tomorrow I will be making ahead of time a few food items. I can't imagine at some point not getting overwhelmed, however it is but once a year. J

~Wishing all Merry Christmas & Happy Holidays!~


Sunday, December 22, 2013

Books on Sensory Processing

I finished the book Too Loud too Bright Too Fast Too Tight recently. I kept thinking that is so me! It was a relief to find something that explained what has been happening to me all these years, how I feel, why it happens, etc. Just my personal opinion, and it could be the frame of mind I was in reading it, but it also had a trace of doom and gloom –  it felt like she was saying I am doomed to disease and illness because of SPD. And I cried a lot throughout and had to stop for days because it was just so dang heavy and disheartening. But again it was the first in-depth book and major source of info I’ve ever come across regarding sensory processing, so maybe it was a lot to take in. I would still highly recommend the book to anyone seeking more info.
After finishing it I started to read The Highly Sensitive Person, which is in the same vein, in the beginning I wished I had read it first as the author stresses early on that you are not alone, shouldn’t feel bad, help is available, and tells you to reframe your thinking so you think of SPD as a trait rather than a problem, which really felt sincere and comforting.  It has a very motherly tone to it. I prefer to focus on the positives and be proactive as to what can I do to make it better, so it seemed more uplifting. I’m not that deep into this book, but it has a completely different feel. I also have the author’s The Highly Sensitive Person Workbook, and I have read that it is daunting and very difficult to work and could take a year or so to complete. But I love to learn and like to be self-aware, so I think I am up for it next year.
 
I must mention though last night I read a passage from The Highly
Sensitive Person that I find so completely offensive and it really
p!ssed me off. I quote from page 96, “you may want to make your
life a little easier by acting a little more like everyone else does”.
Would you say that to a gay person; that they should act straight to make their life easier? So I should ignore my pain & discomfort and force myself to be extroverted? That will make my life a little bit easier? I don't think so. If this is something we are born with and a “trait” rather than a problem, why would you say that!?
I don’t want to be like everyone else, I just want my SPD symptoms to be lessened or tolerable. I'm generally happy with who I am and I accept that I am more introverted than most sheeple (my husband's word for those that follow the mass blindly). This just really makes me mad and I’m not sure I will be able to read on. If I finish the book I will do a future post on it, but at this point I am not happy with this and a few other contradictions the author has made. I also strongly dislike that she calls it being a Highly Sensitive Person. As one who has been called too sensitive all my life, and often meant to be a put down,  it is a very negative term to me. I know my senses are hypersensitive but I don’t like or want to be called too sensitive or a highly sensitive person. I almost did not buy this book for that reason, but since there is such limited info out there for adults I bought it anyway. 

 



Saturday, December 21, 2013

My Story, Part 2


More on how SPD affects me...
As far back as I can remember, I’ve always been a picky eater. I didn’t know why, I just knew I did not like to eat anything but mainly two things. I hated vegetables and refused to eat much else. Not eating = not going to the bathroom so my mom would try to force me to eat, would punish me, nothing worked however. Once in school I started to eat other foods, but still was extremely picky. Now as an adult, I won’t eat meat and I don’t eat anything with a bumpy, wet, mushy, or slimy texture  eg; cottage cheese, custard, wet eggs, browned eggs, flan, tapioca, soft cheeses, squash, quiche, dishes with corn kernels in it, Greek yogurt.
I am hypersensitive to light, but not as much as the other senses. Flashing lights, dim lights, colored lights, strong light; sun or artificial can hurt my eyes & head and make me feel sick.

I don’t like to be touched. I am very ticklish and jumpy. If you touch certain parts of my body I feel them elsewhere, such as if I or my dentist touch my teeth or gums my nose will tickle & itch, if you touch my left side it feels like I have a full bladder and have to urinate. If someone needs to touch me (doctor, dentist, etc.) they have to do it firmly or it tickles or hurts. I do appreciate firm hugs from loved ones though. I don’t like things; shoes, blankets, etc. on my feet, I can’t stand anything on my neck like turtlenecks, scarves, or jewelry (the only reason I am wearing a necklace in my profile pic is because it was taken for my bio in a beading magazine). Often at night when watching TV our small dogs sleep on us and if they put their head on my neck my stomach tightens up, I feel irritated and nauseous and have to move them immediately.  I buy t-shirts that are tag-less. I hate my face being touched by hands, hair, or anything else. I hate wearing restrictive, rough, or big seamed clothing and whenever I get home I will rip off my clothes and put on loose, cotton clothing. I hate washing dishes, putting my hands in water, and I hate the feeling of dry skin –on me or others.

I am very sensitive to energy and hate being in crowds, going to someone’s house I am not familiar with, or being around people in general. I feel weighed down, zapped of energy, sick, and disoriented from others’ energy, busy d├ęcor, negative moods or environments. I haven’t watched the news in a very long time because it is so negative and draining to me. I don’t watch violent movies. I can only listen to happy upbeat but not too energetic music in the car. I am a super light sleeper and kept awake by the clock ticking, the refrigerator kicking on in the kitchen, the heat coming on, if the position of the moon is overhead or shining on the room I am in I wake up and feel it even though I can’t see it & the blinds are closed. I am especially sensitive to the moon when it is full -even though I don’t follow its cycle, I can always feel when it is full.
Chemicals and materials give me hives, rashes, headaches. For instance I get odd reactions to elastic, adhesives, nylon, etc. Many soaps, food preservatives, aluminum cans give me reactions.
If I get overheated I flush and feel very sick; faint, dizzy, panic. I start getting hives, itch, get disoriented. I am best in a cool environment. I like to sleep with 2 comforters on me in a cold room, but they cannot be on my feet.
My sense of hearing is super strong and I often hear things others don’t and cannot tune out things like ticking clocks and watches (which is why I never wear a watch), or someone chewing. Being in a crowded room, noise & chatter overwhelmingly buzzes loudly in my head. I can hear things from far away, soft noises that others don’t.  I am attracted to people mostly by their voice. My husband is a musician and that is how we met (I bought his CD and emailed him a question), I’ll write more about that another day. I think our love story is rather cool. J
Often I know things before they happen or dream of things to come. Sometimes I know when someone is going to or has died. It doesn’t seem to be anything I can control. Although I did find when I studied Reiki and had attunements my intuition was extremely heightened to the point of being bothersome and scary, so I stopped studying and stopped practicing daily. I am a 2nd degree practitioner and find Reiki helps symptoms at times.
Someone who has never heard of SPD or has not experienced it may think it is crazy and at times it sure feels like it. It doesn’t make sense, it hurts, it makes daily life a struggle. Things you aren’t even aware of can make you cry, hurt, get sick, angry, dizzy, itchy, withdraw and you don’t always know why. For instance, my entire life I have never liked showering but do it often daily because it is expected, needed, clean. I almost always cry during or after and feel irritated and worn out after a shower. I never knew why and never really thought about it. I assumed I got overheated and crabby from rushing because I procrastinate. After being aware of SPD and making note of my triggers and feelings & being present, I’ve come to realize showers completely overwhelm my senses. I am overstimulated by the noise of the exhaust fan, the counter fan, the running water, the heat & temperature change from the water & getting out of the shower, the smells from the toothpaste, soap, shampoo, make-up, lotion, towels, the feeling of the toothbrush, soap, shampooing, razor, towels, make-up brushes, comb, applying lotion. One who is not sensory defensive cannot comprehend, heck even I didn’t realize, how many senses and nerve endings are involved and get overwhelmed in such a normal activity. Showering hurts & upsets me every single time. But one must shower or bathe to be clean, and I can’t stand feeling dirty.
Although there are ways to cope and manage, to lessen and distract, it never goes away. My symptoms are getting worse. I do have good days where I am almost "normal", but they tend to be when I stay home or go somewhere where I can control the environment somewhat.
 

 



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!
 



Wednesday, December 18, 2013

What Does SPD feel like?


Since SPD affects everyone differently and not all are bothered by each sense, I would imagine it varies greatly. I can only speak for myself and considering I am affected by most of the senses to some degree, I will present a picture of a severe day for me…
 Imagine you are in a small room filled shoulder-to-shoulder with people. The room is painted the color you most despise, for me that would be bright red. Everyone is wearing red clothes. The room is brightly lit and there is a hot spotlight on you with a strobe light flashing non-stop. The heat is on full blast and there is no fresh air. Imagine extremely loud rap music playing, someone is complaining loudly non-stop, there is a baby screaming in the background. Someone else is speaking in another language. Your spouse is asking you questions but you can’t quite hear what they are saying. You can’t move and people keep bumping into you. Someone tickles you. Someone is in your face talking to you and they haven’t brushed their teeth in a year. Another person nearby hasn’t showered in ages. Someone else has bathed in a bottle of your grandmother’s worst perfume. Someone else vomits next to you, while someone else has diarrhea. A spider is crawling up your leg inside your pants slowly. Someone is holding a large clock to your ear and all you can hear is tick, tick, tick but you still feel the bass from the loud music and hear jumbled voices of those around you talking a mile a minute. Your bladder is full and you have to go to the bathroom but you can’t leave the room. Suddenly everyone starts poking you while a nearby TV screen flashes cartoons at full volume. Someone starts yelling on a loud speaker. The person next to you starts smoking 8 cigarettes all at once and blows the smoke in your face.
This is what a trip to the grocery store on a bad day seems like for me. I’m not able to focus, there are loud noises all around, people smell horrible, I feel closed in, nauseous, and get overheated quickly. The air feels heavy, stale, sick. Someone bumps into me and I instantly feel rage and want to punch them. A smoker walks by and I want to vomit. My eyes hurt, my sinuses feel stuffy, I feel dizzy and hot. I will go home and seek out a dark room to lie down in to recover. I feel exhausted, headachy, as though my personal space has been invaded & violated. I’ll feel dirty, tired, achy, and very irritable.

At this point (once home) any noise will make me cover my ears and cry. Any touch or texture outside of soft loose clothing and my bed will feel like needles or knives. Any smell will make me feel as if my head will explode and I can vomit. The presence of anyone will feel as if I am smothered and have no air to breathe. Once I am overstimulated it will take some time in dark, cool, and quiet to get back to normal where I can tolerate smaller amounts of sensory stimuli – like low volume TV, the dogs playing, our birds singing, my husband talking to me, the phone ringing and even then I will need quiet alone time at regular intervals so I don’t get overloaded or sick.




 

Tuesday, December 17, 2013

So what the heck is SPD??

 
So for those that do not know, SPD, or Sensory Processing Disorder, is a condition in which there is trouble interpreting sensory input; difficulty processing information from the senses that can cause irritability, anxiety, pain, depression, mood swings, exhaustion, heightened sensitivity, fight or flight. One may have issue with one or multiple senses. As I have been finding, it can be called different things, such as Sensory Integration (SI), Sensory Integration Dysfunction, Sensory Defensive, or Highly Sensitive Person (HSP). Not everyone affected experiences the same symptoms, one may be hypersensitive, under responsive, avoiders, or seekers. It is usually caught early when a baby or child is a very picky eater, is fussy, covers ears to drown out noises, withdraws, has mood swings, reacts unusually to pain.

Here are several websites with further info and symptoms checklists:

SPD Life

Sensory Processing Disorder

SPD Foundation

Sensory Processing Made Simple

Sensory Smarts

A Sensory Life






Monday, December 16, 2013

Here it is

I am an adult female (close to 40) with Sensory Processing Disorder & Asperger’s Syndrome. I am only recently diagnosed. I am blogging about this to shed light on what I am finding is rare and so hard to find any info on, Adult SPD. Apparently 1 in 20 children have some degree of SPD, but not many adults. The doctors & OTs I am coming into contact with are all so surprised and seem amused. I feel like shouting, “YES, I am an ADULT with SPD, get over it and f@#$ing help me already. No, I don’t want to take an IQ test, I don’t want any more exams, I don’t want to tell my life story again, or see another doctor who will only refer me to another because no one has a clue what to do for me, an adult.” I don’t want to be poked and prodded, examined and made to feel any worse than I already do. Yes, I am very frustrated and angry. I’ve been dealing with this all my life and my family has only told me repeatedly that I am way too sensitive, stupid, crazy, it is all in my head, I am making it up, it isn’t possible. That is the environment I grew up in. If you are a parent of a child with SPD - please, please don’t ever say things like that to them, don’t punish them it will only make things worse, make them feel bad about themselves. I’ve been reading that the rate of suicide in teens & adults with SPD is quite high. No wonder, it is undeniably depressing to think that life will always hurt, things out of your control will always cause you pain, illness, anxiety, stress. Not many understand or believe you. And there is no cure, no medicine. I am not sure if this is true, but one doctor told me if SPD is not caught by the age of 7, there isn’t much they can do to correct it. Some therapies may help, but nothing will make it go away.

I can deal with Asperger’s – hell I’ve suspected it for a long time now and am ok with it. I’ve always known I was different, this just confirms it. I don’t want to be like everyone else, I like being different, thinking uniquely, being creative & artistic. But the SPD, that is a struggle. I feel like a freak when I can’t handle basic day to day things like a shower, chit chat, being in a crowd, getting physically sick from smells, having meltdowns as an adult. Before I ever knew what SPD was I sought out things that felt good and brought relaxation, some soothe, but none truly help long term.  
I want to share my journey to raise awareness and hopefully help someone else on this roller coaster ride of adult SPD. I hope someday there is more info, help, and a cure for SPD. If there is anyone out there that reads this blog and has this disorder; you are not alone, you are not crazy, adults do struggle with this, and while it is not easy, there are ways to manage, cope, and get support. While I’ve had & hidden SPD my entire life, I am just beginning my journey of telling people, learning more, seeking help, finding specialists, and trying occupational and alternative therapies.