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I'm broken but not unfixable, just untreated - xrobotlove - 01-30-2013
I apologize in advance because I tried to make this as positive as I could. I've only recently been diagnosed and I haven't yet begun OT, so I'm still not sure what is normal or what is SPD related and I haven't begun to work on a single issue yet. My fiancé isn't being supportive whatsoever because he just doesn't understand.. I've never felt less alone in my entire life after reading people's stories on here though. I always felt like people didn't understand what I was complaining about, but I got it forced in my head pretty quickly that I'm just whiney, lazy, self-centered, misbehaved and altogether "bad" for the way I act when I experience these sensations.
When I was a child, I refused to speak to people besides my mother father and brother. I didn't know why but other people seemed too "different"- their mannerisms and voices were unlike my family and it didn't feel good.. I know now its that compared to my family, everyone else seems too loud and intrusive.
I was so young when I insisted on dressing myself. I hated the things my mama put on me, there was one day where she put a shirt on me that exposed my belly. It's all I could think about all day, I kept pulling it down until I was almost ripping it. My mother says that day I had the worst tantrum she'd yet seen; I was screaming and kicking on the floor and trying to claw at the shirt and my skin. She says it really scared her how much I hurt myself. Now I know it's because I can't wear tight clothing or belly shirts, the exposure of my sensitive tummy skin is too much to handle. I can't wear jeans or anything tight either. I also was "afraid" of baths & pools, I never learned how to swim. I get too cold after, and my sensitivity to temperature is VERY strong and causes pain. (I only learned yesterday that it isn't normal to feel burning on the skin when the temperature is higher than "comfort zone" or feel painful pins and needles when it's lower. If I can feel the change, even 2-3 degrees, I'll feel the pain rush over me until I regulate my temperature. I always need to carry a hoodie, or a backpack to put my jacket in, etc. my feet can't be hot or cold, so in summer I must wear flip flops and in winter it's strictly boots.
I had the hardest time as a teenager. I've always been very advanced intellectually, and I was constantly trying to figure out what was "wrong" with me. I was filled with so much misplaced hatred and anger toward myself for being so "bad" and screwed up in the head. I used drugs very heavily to numb this mental anguish. I held the record high in middle school for suspensions. I was a "ringleader" and would act up so bad against the teacher that I'd get the entire class in on it. I was expelled from four different schools, kicked out of my house and forced to live with multiple relatives, etc. This perpetuated my self-hatred, I felt unlovable and unfixable. I grew into this persona, being the worst kid. It lead to several arrests and so many dark places I won't even mention. I had tons of friends but could only spend one on one time with a small few, otherwise I can't stop paying attention to all of the sounds etc that make me uncomfortable, or actually very angry. I tend to snap at people, I get so irritable I can't help it.
People have always called me out for my "quirks"- food has to be its "proper" serving temperature like pizza and coffee must be hot. I must not taste the same taste for more than a couple bites or else I'll feel nauseous. I'll use 3 separate dips if I need to. I can't eat or smell ANYTHING that has made me vomit (even if I threw up for another reason). Cough syrup, corn, rice, scrambled eggs, alcohol, burps.... I can't finish that list, eww ugh but it's incredibly long. I never knew "normal" people didn't actually feel physically ill when they say a smell makes them feel sick. Any smell that is negative, I feel vomit churning in my stomach. If I smell it for more than a second or two, I will actually vomit. (I've heard that adults that weren't treated as children grow a strong physical reaction to the negative stimuli.) These things annoy the hell out of everyone around me. I'm constantly asking to turn the volume down, stop sniffling, stop tapping, stop blowing smoke at me, please don't touch me, I can't eat that, I can't do that, it's too cold, it's too hot, me me me me... So I can't handle being around people anymore again, like when I was a child. I've stopped leaving my house to avoid the intrusive, uncontrollable environment in the huge city of Philadelphia. My fiancé hates that he has to do everything that involves leaving. He forces me to walk to the corner store at least once a week. I also have to go to a lot of appointments, but I always miss them. It takes me so long to get ready, I get so frustrated and agitated that I break down crying and can't leave. Again, my fiancé just thinks its me being whiney and lazy. He's really a sweet amazing man that loves me and wants the best for me, he just doesn't understand that this is a real disorder yet. I've been going through something else, getting off of a physically addictive medication I've been on for many years (I don't do drugs anymore). This medication numbed me and made all of these things easier to ignore. They were still there, I've been agoraphobic for two years now, but just duller. Now they're all at height sensitivity and I just can't stop crying. All day. I still feel so trapped and lost; I'm really sorry for being such a downer but I haven't begun to even work on this yet...
Despite all of this, I've had a few hobbies here and there. Before the meds, I loved writing and painting and crafting. The meds numbed that too, sadly. I'm obsessed with music because I've relied on it my entire life to block out the intrusive world. I hate the outdoors now, but I used to love living near a creek where I could catch frogs and just watch the beautiful thriving life beneath the water. I absolutely love animals, back at home my mother and I had 15 different frog habitats, 2 gecko habitats, and a hermit crabitat! As well as as many cats as we could handle, and my fathers house is full of my doggies. My fiancé and I have a cat, she's the light of my life. Petting cats has always been a huge comfort, I could be so broken down crying but if my cat came up to lay in my lap I'd forget all about it! I've grown to love things I can do from home. Video games, horror movies, and researching anything. I can read a Wikipedia page like most people watch tv. I was very into photography over the summer, because during the summer if its 75-82 degrees I can go outside in the yard and stuff. (During winter I cannot leave, it's just too cold. When I do I'm in so much pain the whole time.) I used to model as well but it became too uncomfortable.
When I start making any progress, when the quality of my life raises from the dirt low its at, I'd like to make a new more positive intro. My head just isn't there, yet. I'm so glad to have found this niche, although I'm really confused as to why people think this is only a disorder in children...? Why don't they realize that children decades ago suffered through pure hell and are currently living uncomfortable, low quality lives, totally unaware that they aren't "bad" people? It makes me kind of mad that I've finally found out what's been wrong with me but there's very little help for me as an adult... Well I'm still young, 23, so I hope there's hope for me yet. Sorry for this being too long.. Really, sorry.
RE: I'm broken but not unfixable, just untreated - heather40 - 01-30-2013
Well, welcome and it is ok to say what you have to say here! I will never know how it feels to be in your shoes, my son has SPD he is 8 so I try to put myself in his place so I can help him better. He too loves animals, bugs, frogs, etc.... Maybe that is where you should start, start small with one of your old passions whether it is painting, drawing, ordering some catapillars from online and watching them grow, start with something small. For instance with the catapillars, get them near spring, watch them transform, then you HAVE to leave the house to take them to the park to let them go when they become butterflies. Go to a park with a pond and make yourself remember what you loved. Bring your paper and pencil with and sit there with your music on and draw. You have to start somewhere, you should not have to feel so bad all the time. This is a GREAT forum and anytime you need to vent we are here for you!!! So welcome!!!!!
RE: I'm broken but not unfixable, just untreated - shorrocksalot24 - 01-30-2013
hi, and welcome - there are a some of us adults here - and I understand your pain, and suffering. Oh my - I read your post - and see so many similarities - I am a (almost) 43 yr old mom. I am sure I had SPD my whole life - but mine has become horrible in the last 5 years - to the levels that your at now - and your only 23
What is good - is that you dont have to feel alone - or crazy. Its real, and really can make you miserable....what I have found essensial - is recognizing the triggers, I really only began that about a year ago, and its the only way to try to minimize some of the stimuli that we dont want - or finding ways to cope, even creating stimuli we do - that can help get past the meltdown crying phase. I have successfully done that with doing dishes (after many, many years), and stopped crying in the shower - this summer! Music is my lifeline - for sure - and I love frogs so much - and my cat...they are very perceptive to our suffering - and calming. I struggle quite a lot these days - going out - because now I know its an entire set of overstimulli that I cant control - so I am trying to figure that one out - in due time I guess....I too like video games, movies, researching and documentaries became a more recent favorite of my this past year...welcome and anything I can give you ideas about - I will do my best!
RE: I'm broken but not unfixable, just untreated - xrobotlove - 01-31-2013
First @heather40-
Thinking about enjoying those things again made me tear up a little... Sadly it's always 10 degrees outside during the winter here and cold is very painful :/ I've been trying to write though. That medication I was on-the addictive one I'm almost off of- it really dampened my entire mind. That creative place that used to thrive is buried in the attic full of cobwebs, under a thousand boxes of Christmas lights and outgrown clothes... But writing on message boards seems to be bringing it back a tiny bit. I wrote a somewhat nonsense 3 line poem yesterday, ha! progress right? And I was still keeping a gecko and two hermit crabs until early last year... I just couldn't take care of them properly anymore and I knew they deserved better. My father is very alone and giving them my little buddies has improved his life drastically, plus he has all the money and ambition to not just take care of them but turn their habitats into beautiful "mansions" where they've all grown twice the size and run around so happy. I miss my gecko that I raised from birth, but I know he has a better life now. As I learn to cope with this, I plan on taking every bit of that advice to heart- the butterflies sound so perfect for me. I remember loving it so much in 2nd/3rd grade. And I actually do still have a creek pretty close (not in my backyard like before, I have to walk 5 minutes of urban city). But I've been agoraphobic since living here. Whenever I did walk by it I always stopped and walked down two steps just to see the frogs jump into the water, then I'd go on my way. When the creek stops being frozen, the scene you described to me... Sounded like pure bliss. Thank you so much for your response, in fact thank you for all of your responses, you really have a knack for SPD advice!
@shorrocksalot- I just can't believe how much pain and suffering I had to go through due to the ignorance of the mass population to SPD. So many of my lowest moments could have been prevented. My teenage years were so, so dark and painful... Hating myself that much, I caused myself pain I didn't deserve. Drugs, cutting, promiscuity (I suppose trying to prove that I can be loved)... But like you said, I'm only 23. I'm lucky to have found it now rather than 20 years from now.
The only way I can go outside is with headphones, a hoodie with the hood up, and sunglasses- during winter I add a hat and scarf up to my nose. It's my "invisibility cloak" I tell myself, nobody can see me or hear me, I'm invisible and I can look at anyone and they don't even know it. I almost play a "catwoman" game in my head, I get super "shady" looking and walk around as if I'm a ghost. I'm in a whole other world since all I can hear is my music, none of the traffic, construction, etc. when I walk by the restaurants I put my nose in the scarf. This is the only way I've managed to walk to the corner store thats only two blocks away lol going into the busier city is too much still.
I saw an incredible documentary on state institutions in places like Bulgaria, Ukraine, Romania. It's so shocking and literally made me want to cry. The really good one is "Bulgaria's Abandoned Children" and the Ukraine one is "Ukraine's forgotten children" but watch the Bulgaria one first. Parents are encouraged to sign over any disabled baby / child to the state. But those institutions do not have qualified doctors or nurses. The "nurses" are just random people with maybe a high school diploma. If there is a doctor, for example in the Ukraine one the only doctor was actually a dentist. To treat 126 disabled, malnourished, severely neglected children who are deformed physically and developmentally due to the neglect. She said straight up the only thing she can do is check if they have pneumonia or bronchitis. It was a BBC special, but you can see it for free on YouTube. It's mind-blowing, truly one of the most heart wrenching documentaries I've seen in a while (and I'm a documentary nut!). It has 9 parts, watch them in order. I'll message you a link to the first video!
RE: I'm broken but not unfixable, just untreated - Tuttleturtle - 02-01-2013
(01-30-2013, 03:09 PM)xrobotlove Wrote: I never knew "normal" people didn't actually feel physically ill when they say a smell makes them feel sick. Any smell that is negative, I feel vomit churning in my stomach.
They don't? Then why do they say that...
RE: I'm broken but not unfixable, just untreated - heather40 - 02-01-2013
Its' ok, I have tried to do it so much for my son. He has an aversion to smells as well and I do not take it lightly. My boyfriend is as well coming off an addictive med as well and he definitely has SPD that went undiagnosed all his life he is 50, then I come along! lol This helps me as well to understand what he could be going though that I do not understand. I think it is harder to be patient with an adult because they are that, an adult. So I have to remind myself that he is not any different then my son just older. I think with spreading the word and educating people as much as we can it will mean more help and understanding for all of you guys! I get so mad when I go and sub in different rooms and you see these kids of all ages struggling and I am told " Watch out for that one" no I won't, how about I try and help them have a better day! I believe that there are not behavior problems, I believe that there are problems that cause the behaviors. If we can get to the root of what is troubling them then we can help them to be successful. Not just assume that the kid or person is a "problem child'. It is funny ( not ha ha) my boyfriend now will say, I am like Logan ( my son) when I was in school I couldn't sit still, I always had to get up and move, I couldn't listen, etc.. He goes now I know why after hearing about Logan. Him never being helped properly came from the ignorance of the time. He ended up being a trouble maker, kicked out of school and put in a behavioral school, etc. So, I have this problem to want to try and think of ways to come up with ideas to help rather then to ignore. My friends tell me I have a disease. lol! So... with that being said! You should draw a picture or write about that day you take the butterflies to the pond! Write or draw what you are picturing in your head and get out of your house in that sense for now! Try and do something once a day to make yourself feel happy. I don't know you, but I do know you deserve it! I have spoken! hahahahaahha
RE: I'm broken but not unfixable, just untreated - frubsdad - 02-01-2013
Hold your head high xrobot. Winter can really suck by being constantly stuck indoors even if you don't have SPD. Luckily I really enjoy the outdoors and even if it is 10 degrees outside I will take a walk through the woods....which is really cool in the middle of winter...it is so silent and peaceful. Like yourself, I don't like big crowds or being around a ton of people...thus head for more solitary places. I also ice fish as much as possible because it is also a place without distraction for me...allows my mind to slow down and rest...kinda like church for me. Another vice for me is gardening. Fairly soon I will begin getting my trays ready and seeds planted inside. By the time spring comes around and the plants and veggies can go in the ground they are well established. Once the spring comes around I spend a lot of time in one of my many planter beds gardening after work. It is a good place to decompress. I am not sure about ya'll...but idle time is what gets my SPD thumping. If I sit around all day every little thing is multiplied by ten.
RE: I'm broken but not unfixable, just untreated - heather40 - 02-01-2013
OMg! My son loves seeds! lol Too bad you don't live closer you could start a bug/gardening group for the SPD kids!!!! lol When we go to the hardware store we HAVE to buy seeds and try and get them to grow! Seeds, bugs, fish, cactus, crabs, frogs, turtles, next I'll have a squid in my living room!
RE: I'm broken but not unfixable, just untreated - xrobotlove - 02-05-2013
Thanks so much for your support guys... It makes me cry whenever I come on here, because I've never heard another person relate to me with all of these thoughts and feelings and peculiar "quirks". I wish there were more research for us adults dealing with SPD who weren't diagnosed as a kid. The results are severe; the depression, the agoraphobia, the self-hatred, the altogether feeling like you're weird, abnormal, f*cked up in the head, broken, incurable, stupid, lazy, slow, ambition-less, whiney, pathetically sensitive.... The list goes on.... My current psychiatrist doesn't know anything about SPD and now I'm totally lost on to how to find one that does. All the ones I find, they only treat children. And I live in Philadelphia, a city where nothing is unavailable. There are a few colleges whose students can study me and do minimal treatment but I feel that will be more draining than living untreated.
I really wish it wasn't winter. My family is from California and all of us suffer from seasonal depression. Since cold actually causes physical pain to me, the seasonal depression is way worse. It's such a strange form of depression, it's like your mind is begging for hibernation and refuses to adjust to the temperature. I feel catatonic sometimes. In the summer I'm so much happier. When I was young I loved camping with my father, we used to do everything outdoors minus hunting. We used to fish for hours every weekend. It was so quiet, so still, so "real life" feeling... Like a normal person should always feel. We'd camp in the woods and he'd tell me all of the different plants and bugs. When I could still take care of myself, I was always alone in the woods or at the creek.
Maybe kids with SPD (over sensitivity type) need this? The calm serenity, the lack of humans, the feeling of having your surroundings NOT overwhelming you for once. The accomplishment of setting a tent or catching a fish. I know those are definitely my happiest childhood memories, so just a suggestion for anyone with SPD kids, go camping and fishing! (I can't personally condone hunting.)
RE: I'm broken but not unfixable, just untreated - LAC1961 - 02-05-2013
First of all, thank you for your courage in sharing your story. Since SPD can't be "cured" all of our SPD kids will grow up to be adults with SPD. Yes, being diagnosed young will help them learn adapting skills and prepare them to live a more "normal" life, but they'll still have SPD. I'm glad you've found this site and are beginning to get some support. After thinking about your posts, I'd like to offer some advice/guidance, which may help you when you're ready.
First, go ahead and contact child psychiatrists--as many as you can--until you find one that will either treat you even though you're an adult or will refer you to one who knows about SPD.
Second, I'd recommend you read the book Growing an In-Sync Child. Yes, child is in the title, but there are really great activities and exercises in this book that you could try that may be great for you. My husband and I do them with our daughter, and there's nothing about them that makes them only for kids.
Third, regarding your seasonal depression, buy a plant grow light. You could spend more than a $100 to buy one of those broad spectrum light bulbs, but for about $10 you can just get a plant grow light bulb from a garden or hardware store, put it in one of the lamps you already have, and sit under it about 20 minutes a day with a sleeveless top so your full arms are exposed. I learned this from a friend who is a psychiatric nurse who treats lots of people with seasonal affective disorder/depression, and this is what she prescribes. Don't do it for more than 20 minutes a day, though.
Lastly, consider some dietary changes. Artificial colors, flavors and preservatives are a major contributor to symptoms of autism, SPD, ADHD and many more. My daughter has been on the Feingold Diet since October, and the improvement in her behavior and SPD symptoms has been dramatic. The biggy for her was BHT, which is in thousands of things Americans buy all the time. If she drinks two ounces of milk that has BHT (used as a preservative in Vitamin A Palmitate--so it's not listed on the label) within an hour, she's screaming, kicking, banging her head on the floor and wall, hitting, weeping, wetting her pants--you get the picture. It takes anywhere from 2 days to a month to detox depending on how much BHT is built up in your system. Check out the site Feingold.org if you want to read other people's stories and more about the diet.
I hope these ideas are helpful. I applaud you for your openness and willingness to work on finding help for this disorder.