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Hello from Pennsylvania - JustJ3n1ca - 04-17-2013
I don't really know where to begin and I'm not feeling confident today at all. Right of the bat I want to mention that I haven't been officially diagnosed. I'm not sure what kind of reaction that might get. I hope people are understanding of that fact that I'm just here to feel less alone and maybe get some advice to help me feel like less of a freak.
I guess I'll start of with the typical details. My name is Jenica and I'm 28. I can't remember a time without some sort of sensory issue, and honestly they seem to become more and more as the years go by. As a baby/child my mom always described me as a "touch-me-not". I wasn't a snugly, cuddly baby or child, unless it was on my own terms, and that was few and far between from what I've heard. This is still true today. Often even the most well meaning touches, a hug or kiss from a family member or significant other, will make me cringe inside and often feel physically painful. I'm so overly ticklish that even touching myself at times is just too much. I don't even like the term "ticklish." it sounds like something that should be fun, but it's just not. Flat out, it's one of the most painful things I've ever experienced. There are days, like today, that I feel so uncomfortable in my own skin. My fingers and toes resting naturally against each other, is bothering me. I'm just having a bad day.
It started out this morning. Mornings are always hard for me. Normally it's just the matter of brushing my teeth. I've got issues with texture, especially in my mouth (Popsicle sticks, envelopes, nuts, coconut, foamy things just to name a few). I brush my teeth everyday, just like everyone should, but it is so much of a struggle to complete the task. I have to hurry up and get everything brushed before the gagging becomes too much and I end up in a heaving fit that often leads to broken capillaries in my face and around my eyes. Well this morning, before I even had the chance to brush my teeth a smell sent me into one of these gagging fits. A smell of something that I love, and eat regularly... hummus. I don't know what it was at this particular moment but immediately the gagging started and proceeded for almost half an hour. By the time I got myself calmed down I had dry heaved so much my face was in splotches and my nose was bleeding quite heavily. This just isn't normal. It's not normal to struggle to do every day things, like brush your teeth or put an envelope in the mail. It's not normal to not enjoy a hug or a cuddle from your significant other. And today, I'm just having a rough time with all of it.
There are other things too. Lights and sounds. Arguing or even lengthy debates. Things that cause me to literally just shut down and zone out. My intense fear of falling. The desire to wash my hands so many times throughout the day. By the end of a work day all I want to do is curl up and decompress. I'll find myself sitting alone in my empty living room with nothing on for an hour or more sometimes before I'm able to proceed with the normal at home things that need to be done.
I really don't know where I'm going with all of this. I congratulate those of you that have made it this far in reading it. I guess I just want to feel less alone. Less abnormal. I wish I knew what to do for some of these things. Faking it only gets me so far. I fake my way through a handshake easy peasy, but you can't do that in a relationship. They get so hurt when you jump and spasm at every touch. They don't believe that they're not doing anything wrong or that you can't help it. Faking just builds up until things overflow and I think I've reached that point today. Writing all this just brings tears, the tears burn my cheeks and I just don't want to feel like this anymore. So please, if you feel inclined, I'm open to hearing your stories and suggestions.
Thank you for listening. I appreciate there being a group like this out there.
RE: Hello from Pennsylvania - Tuttleturtle - 04-17-2013
You are abnormal. But you're not the only one. And you shouldn't have to fake it.
Some days just the air on my skin makes me want to rip my skin off. I stim, stereotypically autistic, because constant movement is the only way to keep my skin from feeling like it is in so much pain that it should be ripped off.
And some days its easier than others.
There are things you can do. Yes. I know you aren't diagnosed, but I'd pursue it. Not because you need it, but because I'd pursue the occupational therapy that you can get. It can help. There are things that can be done to help. From this description you should really try the Wilbarger Brushing Protocol. Unfortunately that's one that you do with an OT, with them overseeing the progress, to make sure everything is being done right, so you'd need to have an OT for that. You can find OTs who take adults though.
So that'd be "Find an OT who accepts you as an adult patient, and one of the first things to do is the brushing protocol" is one suggestion.
Next thing I'd suggest is simple. Build yourself somewhere as safe as possible. Don't care about how strange others might think it is. This is for you. You don't need to fake. You don't need to please them. Set it up with things that are good for you sensory-wise or block things that are bad for you sensory-wise. Do what you can.
Similar to that. Noise cancelling headphones or noise isolating earbuds are great for blocking sound while blending into the environment. You're "just listening to music". Even if there is no music on. If you're not wanting to use earplugs or ear muffs, you can use things that would be associated with music instead.
For light, change lighting in your house to what's nicer for you. Don't be afraid to not use CFLs if they're not nice for you. Personally I love LEDs. If warm light or cool light is better. Use the one that is better! Be nice to yourself. For me, if I'm using cool white LEDs people can see a visible difference in my functioning than if its a warm white CFL.
With you mentioning you have a fear of falling, I'd guess you have propioceptive issues. Propioception is basically your body's idea of where it is in space that isn't balance. Usually people who have issues with fear of falling have propioception issues. (I'm abnormal in that I have really bad propioception but not a fear of falling). Something that can help with this and with anxiety is just yoga. It's straightforward, but can help.
Another thing that can help with a huge amount of sensory issues for a lot of people, especially propioception, is weight/deep pressure. So, check if that helps you. Does squishing your body help? Does putting yourself under something heavy help? For a lot of us that helps regulate our other senses and helps get them under control faster and keep them under control more. A really frequent item in a sensory toolkit is a weighted blanket.
On that note, sensory toolkit. You might have built one up already, but not everyone thinks about it. I know I didn't think about it entirely despite having severe sensory problems.
Build up a set of items that help you with every one of your sensory issues and carry them with you. For example, I have a mask I wear for my nose, earmuffs, things of proper textures to fidget with, peppermint oil, gum, and lots more, and these are things I always have with me.
I've probably said too much, but hopefully there's some useful stuff in there.
RE: Hello from Pennsylvania - JustJ3n1ca - 04-17-2013
I have to sincerely thank you for calling me abnormal. Because, you're right, it is the truth. I've tried to talk to so many friends about how I feel and most of them just brush it off as "everyone has their own type of weird" which is true. But my weird doesn't consist of liking the Twilight series a little too much or anything along those lines... but well you know, you've experienced this I'm sure. You understand.
For real though, your simple response and suggestions make perfect sense. And honestly some of this stuff I've been doing my whole life without even really realizing. I often sit at work with my earbuds in and no music playing. It helps to slightly block out the grunts and coughs, ticking of keyboards, copiers, chatter, you name it of any normal office. And it really does help to steer people away from what can be frequent socializing stops. See, I'm a graphic designer and there isn't much that will stop most gabby creatives from chit chatting lol.
Also for as long as I can remember I sleep under a stack of blankets. I don't sleep well even on a good night, and can forget getting any sort of sleep if I don't have heavy blankets from head to toe and my huge box fan pointing at my face (I feel like I'm suffocating without the fast circulating air. I always thought it came from having asthma and not liking the sensation, but now I'm wondering if there is more to why I do it). Currently there are 4 comforters and a sheet on my bed, a HUGE collection of pillows and a heavy body pillow. I just recently had to add the 4th one. Sleep has become even more of an issue since all my other sensation issues have become increasingly worse.
I really feel like I could go on all day about how I feel and what I experience. I've never had any sort of conversation with anyone who experiences anything remotely like what I do. And I am scared to death for some reason of approaching a diagnosis. I think I need to, I think I need help. This, especially recently, feels like it's taking over my life. I'm single again because my partners just can't handle or understand or something my touch issues. They can't help but take it personally, and that is crushing to everyone involved. It just feels so debilitating anymore especially since it slaps me in the face every morning with the simple act of tooth brushing. I feel so alone even though I do have group of great friends, but people have a hard time understanding something that seems so... I don't know trivial? I get looks like "you're crazy, just sleep without the fan" "don't be silly, you must be exaggerating"
I guess this is my first step to really accepting that maybe there is a greater thing going on. I've always known, but apparently KNOWING and ACCEPTING can be two very different things. Thank you, Tuttle, for taking the time to listen to my tearful ranting. I just feel so overwhelmed by life right now. Everything it just so so much right now.
RE: Hello from Pennsylvania - Kate_M - 04-22-2013
I wish I could give you your sensory equivalent of a hug...
TT has some awesome suggestions and I really like her idea of a sensory toolkit.
Hoping you find hope and help here!
RE: Hello from Pennsylvania - JustJ3n1ca - 04-23-2013
Thank you Kate. It has been fantastic learning that I'm not as alone as I sure felt. I've had a lot of wow moments over the last week or so and have also had the opportunity to talk to a few people. I've been feeling a little better, a little less overwhelmed and even made it out to see and help fly some hot air balloons, which was a surprisingly refreshing and relaxing experience for me. I was pretty much done for by the end of the day though, which I kind of expected, but was glad that I had the chance to experience it. Hard days come and go, they always will, but I'm thankful to have a "family" that understands it, when others in my life just don't.
RE: Hello from Pennsylvania - Kate_M - 04-25-2013
That sounds fantastic - I'm glad for you!!!
I don't have quite the level of processing issues as you or TT experience, but the more I read up on this and look at symptoms from infant to adult, the more I see the patterns in my life and in my family members. It's always irritated me that my mom is hypervigilant and reacts as though anything and everything is attacking her (!!!) when I tend to then also have a fight/flight response only to see she's dropped a stick in her knitting or that the gate banged when the kids came in.
My mom can't stand having her ears open (hair has to cover them), she hears EVERY single little noise in our block and then wonders what people are doing, why dogs are barking in the next street, etc. Neither my mom or I can eat egg white (like a fried egg). I hate the sound of emery boards and think that this, as well as chalk on cement/a black board, sounds and feels like what nails on a black board sounds like to other people. I can't bear suede. There are all these tiny things that seem to add up into tactile and auditory issues.
I have 3 kids and when all three are revved up and shouting I literally can't think. I can't wear high heels (balance), I do extremely badly in social situations where there are large groups of people - I do better with people I know well, like at family get-togethers, but strangers make me feel like I can't get everything to work together. I start to stutter because I'm trying so hard to watch for expressions/cues that I can't think about what I'm saying
it's really annoying. I don't like unexpected touch and except for DH, really don't like kisses - like family greetings etc.
Do you think it's possible to experience almost a shut-down in one sensory area due to not being able to cope with all of them and needing to work out what to focus on...??? If I meet new people or go somewhere new and have to talk to strangers, I can never remember what the place looked like afterwards. I can't work out if this is just because I am completely unobservant or because I just can't take the sensory load of everything and the emotional anxiety, and something has to go...???? Am I nuts?
Anyway... after my sidetrack there... I'm glad you're having some success, I think it's great to be aware of where and what problems you have so you can learn to cope and find things to add to a toolkit to help you when you're not coping.
Hope you have had more good days than hard!
RE: Hello from Pennsylvania - Rinne - 04-30-2013
JustJ3n1ca, you got great advice from TT there.
It's hard to accept, I know, having recently done the diagnosis thing (about three months ago). I oscillated so much the month or so before the diagnosis between thinking yes, I must have it, and no, of course I don't. Even after the diagnosis, I had troubles accepting it for a while. But the more I learned about it, the more I learned about my reactions and things I've never noticed that I do, I've really realised, yes, I do have it and have accepted it. And OT has helped me a lot, even just over the last few months. I feel a lot more relaxed now and am starting to become aware when I'm actually heading towards overload. And this is basically just from the brushing protocol that TT talked about and putting in place some things for a sensory diet.
Once you understand why you're body is reacting the way it does, and have an explanation for it, it will be much easier to explain to the people in your life (the people who matter, that is) and for you to cut yourself some slack.
As TT said, yes, you're abnormal, but that's okay. Things can be done to help.
Hope you can find your way to an OT that will be able to help.