Posts Tagged ‘ttm’

Awhile back I wrote about a cool fidget cube thing I saw online. There are different things such as switches, buttons etc., on each side and it fits in your pocket so you can take it with you any where.

I really wanted to get one, but money has been pretty tight lately so I held off — until yesterday! The cute little gadget went on sale for about $4 and free shipping on Amazon. Add to cart, yes please!

I can’t wait to get it! I did not realize how much I fidgeted until I started researching Trichotillomania and started trying to track my triggers and patterns. I always have to have something in my hands, whether it be a pen, stress ball or anything else so that I continuously have something against the skin in my hand. When I don’t have that feeling my hands reach for the hair, I have definitely made that connection. It seems that the skin on my hand needs stimulation.

I have always been sensitive to textures, I guess maybe more so than most people. I did not realize it was more intense for me though. I remember wearing corduroy pants as a child and rubbing my hands across the ridges of the fabric over and over because I could not get enough of that sensation. On the opposite side of that spectrum I cannot handle the roughness of emery boards. You know, those nail file things? Even the thought of touching one of those makes my teeth hurt and gives me the chills. Keep those things away from me!

I hate dry skin with a passion that seriously cannot be put into words. I will literally pull over if I am driving and I have dead skin on my fingers just so that I can pick it off.

Anyway, I should have my fidget cube in a few days. I will let you know how it works!

 

I’ve always loved to draw and write, but I had not drawn anything other than doodles for what seemed like an eternity. But recently I have started drawing every day again. It seems like it is all I want to do, every free moment I get I am drawing, I can’t stop! It is like I’m possessed or something.

I draw in meetings, when I am home for lunch, at night after the kids go to bed, all day on the weekends (in between loads of laundry and such), all the time. I have been doing these little zen doodle things. Everyone keeps telling me I should publish a coloring book. Maybe I’ll try when I get enough done, we’ll see.

The good thing is that my pulling has dramatically decreased. I noticed that I was doing it more at night when I was  just sitting on the couch watching TV. Now I am drawing and it keeps my hands busy. And if I do catch myself pulling I just out my pen or pencil back down to the paper and focus on that instead. It’s helped so much, probably the most out of other techniques I have tried.

I will share some of my art here.
jennys-art-1

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I have taken some time off work, about two weeks to be exact. My daughter moved to Kansas City, Missouri in July and I had not seen her since, so I bought some plane tickets and flew out there to pick her up and bring her home for Christmas. I’d never been that far east before, and it was the longest I’d ever been on an airplane.

So since I’ve been off work I noticed that I have hardly pulled at all. And when I do I can catch myself and stop. I have noticed that before, that when I take some time off work my pulling greatly decreases. It’s not like I have an incredibly stressful job, I mean it has its moments but it’s a desk job and I sit in a corner in an office that is pretty much blocked from view. I am responsible for a lot. There have been a lot of lay-offs so I have taken on more and more responsibility. I have not had a raise in about 8 years, and money is tight so that really stresses me out.

But the urge to pull is so much less when I am just at home with no-where to go, when I can just sit and read or draw or something. I want to keep this streak going. I go back to work January 3. How can I keep this sense of calm after I go back to work?

 

 

 

One of the first steps in dealing with this disorder is identifying your triggers. I have discussed this in several other posts, but it is important. For example, caffeine and over-stimulation is a trigger for most people, myself included.

For me, however, I have been doing this for so long that it is harder to identify my triggers.  I think that after 20 years a lot of it has become muscle memory. I pull when I am tired, I pull when I am wide awake, when I am bored, when I am stressed. . . there seems to be, aside from a couple of obvious things, no rhyme or reason to it. Maybe I need to try harder to identify what sets it off.

This last weekend I found myself pulling more and more in front of people. Usually I can hold back when I know that I am in a room full of people, but this weekend not even that stopped me. I am hoping that was just a temporary thing. I realize that I am doing it and stop, but then start again moments later without even knowing it. I wonder how many people have seen me pull and wonder what the hell I am doing.

I found this article about two brothers who have developed a bracelet that vibrates when a person reaches to pull his or her hair. It was designed for people with Trichotilomania. I am wondering how well it works. I would like to know before I spend the $90 for it. I think it is pretty new so there are not a lot of reviews on it. If you hear anything please let me know.

http://www.seattletimes.com/business/technology/brothers-bracelet-lends-hand-with-hair-pulling-condition/

Two to three times a year I have an absolute breakdown. By that I mean a 24-hour or so period where I am a completely different person. Super depressed, way more than usual, not eating or sleeping, being super angry at the world in general and curling up in a ball and crying and screaming in a corner. After awhile I get exhausted and I fall asleep, then when I wake up I gradually come out of it. I don’t always remember much after one of my “episodes,” which is probably for the best.  I would never hurt anybody, except myself of course, but I’ve learned that when I get that way I just need to go into my bedroom until it passes. It’s like catching the flu or something. . . it grabs you and won’t let go and you just have to let it run its course. That was my Saturday-Sunday. Thank God it only happens a couple of times a year.

Following that I pulled more than ever last night. I went on a major binge. I honestly can’t believe I have any hair left today, I thought I just about got it all. This “manic” episode has continued today, it is like my fingers have a mind of their own. I can’t focus on work or anything else going on around me today, everything is jumbling together and not making sense.

I couldn’t sleep last night, which I am sure contributes to the way I feel today.

On a side note, not wanting to make this post entirely negative, I have found a correlation between caffeine intake and pulling. A couple of years ago I completely cut soda from my diet. I have it only every once in awhile when we go out to eat or something. I had heard that caffeine and other stimulants increased the urge to pull, so I decided to pay closer attention to how I reacted. Sure enough, when I drink soda I tend to pull more.

That’s just a little chip on the iceberg in my quest to get to the “root” of this. Ha ha, see what I did there? LOL. Only trichsters get that joke.

I see on various forums where people post their successes. . . “50 days pull-free!” and I can’t help but wonder where they started. I don’t think I have ever had one pull-free day. It’s not that I have not tried, believe me, I have, but I don’t know when I am doing it. I try to catch myself, and I do quite a bit, but there are many other times when I realize I have been pulling for the last five minutes and I didn’t even know it.

So how does one start when you don’t even know you’re doing it?

I have read that there are three different types of pullers — those who do it completely subliminally, like in a trance, those who do it cognitively, like pulling until they find that perfect hair, and then there are those who do both. I am pretty sure there are more people who fall into the “both” category, myself included.

I have been trying to pay attention more to not only my triggers, but times when I seem to pull for no reason at all. I notice that I pull when my hands have nothing else to do. When I am driving, when I am reading, etc. Any time my fingers are not twiddling something, fidgeting, touching something with texture.

There is something in the way my brain is wired — my fingers need constant stimulation. When I am not touching something with some sort of texture or fidgeting with a slinky or something I can feel my anxiety creep in. I am not going to pretend to understand why, but it is a definite fact.

I have always been a fidgeter, even before I developed Trichotillomania. I have always had to play with something in my hands, tap my foot, twirl a pen and that sort of thing. Somehow it developed into hair pulling when I was a teen. I never really thought about it until I started to realize that having something in my hand to play with took the edge off the urge to pull. So far it is the most satisfying thing to me besides the hair pulling.

I have always been kind of embarrassed by the fidgeting, I thought it was a bad habit or that it was annoying other people. I thought it was weird and I tried to stop doing it whenever I was in public as much as possible. Now I have learned that a lot of people do it. A lot. Most just don’t develop into hair pulling.

So now I am trying to make sure that I always have a fidget toy or something to hold, to play with. When I am typing I am good as long as my fingers stay on the keys. If I stop for a moment to gather my thoughts my hand goes straight for my hair. So I have a little rubber spiky ball and a little pink plastic slinky on either side of my keyboard that I hurry and grab before my hand goes to my head. I am trying to train my brain, alter that routine to reaching out for a fidget rather than going up. I have read about muscle memory, and I think a lot of my hand going straight up to my head all the time is because it has done it for so long. It’s like a reflex at this point. I am going to stay diligent and keep stuff to play with all the time.

I think that twirling a pen or something in my hand is a lot less noticeable than pulling my hair out, I just have to train my arm muscles and my brain to switch paths. Easier said than done.

Peaceful hands.

This is so exciting!

 

There’s not a cure for Trichotillomania, we all know this, and though an estimated 1 to 3 percent of the population has it not a lot of research has been done to determine how and why it starts and thus how to manage and even prevent and cure it. It’s extremely frustrating to have this disorder and to be told that you’re not alone only to find out that there are very few psychological specialists who you can turn to for answers. It’s more common than we used to believe, and yet there is a huge gap between people who suffer from TTM and people who can help the sufferers of TTM.

But the people involved with the Body Focused Repetitive Behavior (BFRB) Precision Medicine Initiative are hoping to change that.

From an article published at wbur.org:

“The initiative aims to increase remission rates in hair pullers from the current 10-20 percent to 70 percent in the course of seven years. It brings together researchers at 20-plus institutions, including Massachusetts General Hospital and the University of Chicago, in an effort to increase understanding of the disorders and improve treatment.”

Download the case statement

The doctors are in the process of analyzing behavioral and genetic patterns from hundreds of TTM patients to create several BFRD profiles. These profiles will help to identify new, more personalized treatment.

Part of the difficulty with treating TTM is the difference people each person who has it. Everyone who has ever walked the Earth has a different genetic profile and different behavioral influences etc., it is impossible to create a “one size fits all” treatment.

But this is huge step toward getting some specialized treatment! This is such a renewed hope for me! There are people who care!