Saturday, February 21, 2015

CBIT for Tics (Part 2)

Okay, so I promised I would write more about my experience with CBIT. CBIT is not a cure for TS, but is has helped me manage my tics a lot better. I have far fewer days that end in exhaustion and frustration, and I have managed to get rid of a lot of my previous tics completely. Don't get me wrong, I still have plenty of tics, but I now have fewer tics and the tics I do have are less frequent, less severe. One thing that's helped a lot is having a therapist who is so understanding and who is willing to re-work the therapy based on what works for me and what doesn't. We've had to make a lot of adjustments to the original CBIT protocols because #1 paying attention to the premonitory urge for me makes my tics A LOT worse (and paying attention to the urge is supposed to be a big part of awareness training with CBIT). So we have had to get rid of that part competently, and also re-arrange a lot of other things as well. With a lot of tweaking though, we have found what works best for me! All and all CBIT has worked better and has improved my tics more than any medication i've been on and the best part is NO SIDE EFFECTS!

So, today when looking back at blog posts I came across a list of my tics that I wrote down back when I was in my Junior or Senior year of high school (about 3 years ago). What i'm going to do is i'm going to paste that list here and i'm going to cross out all the tics that I no longer have. Some of these tics have just gone away because of the fact that tics come and go, but others have directly gone away because of the work I have done through my CBIT therapy. So here we go! Let's see how many tic i've gotten rid of!

  1. Eye rolling to upper right corners
  2. Fast blinking
  3. Hard blinking/squinting
  4. Hard blink and hold eyes closed in a squint as hard as possible for 3 or 4 seconds
  5. Grimace with mouth combined with eye blink
  6. Pursing lips silently
  7. Pursing lips to make a slight and quiet kissing sound
  8. Lifting upper lip
  9. Pouting lip
  10. Slight raising of lips into fast smile
  11. Sticking tongue out
  12. Chomping teeth
  13. Opening mouth really wide (looks like a silent scream)
  14. Twisting lips to the left or right side of face
  15. Entire face squint (just-tasted-something-really-sour face)
  16. Slight neck bend to left or right side
  17. Neck turning which results in neck cracking
  18. Violent head/neck jerking forward
  19. Shaking head fast from side to side
  20. Bending head backward
  21. Shoulder shrugging, both at same time or one at a time
  22. Pulling shoulders inward toward sockets
  23. Cracking shoulders
  24. Jerking both arms fast outward in front of me
  25. Cracking elbows
  26. Stretching arms all the way straight in front of me slowly
  27. Tilting head backward while taking in a sharp breath
  28. Tightening muscles in neck
  29. Tightening muscles in arms
  30. Arm contortions
  31. Jerking both arms toward chest vertically pretty hard
  32. Jerking right arm toward chest vertically pretty hard
  33. Hitting chest pretty hard with right hand
  34. Hitting stomach very hard  with right hand (sometimes so hard that I feel dizzy and start coughing and gagging as a result)
  35. Pushing hands against face really hard
  36. Hitting inside of elbows with hands
  37. Hitting things (chairs, laptops, desks, tables, anything in reach, etc.)
  38. Hitting eyes/parts of face or head
  39. Making fists with hands and clenching them
  40. Finger stretching and moving
  41. Bending hands at wrists fast
  42. Extending middle finger
  43. Making guns out of my finger
  44. Cracking knuckles
  45. Tightening all muscles in hands and fingers
  46. Tightening muscles in chest, throat and stomach so tight I am not able to breathe
  47. Lurching neck forward
  48. Tightening muscles in legs
  49. Jerking legs outwards
  50. Stomping
  51. Rolling ankles
  52. Standing up on tip toes
  53. Kicking
  54. Drumming on tables
  55. Knee knocking
  56. Separating toes
  57. Raising big toe
  58. Crossing over first two toes
  59. Jerking entire upper body backward
  60. Full-body jerking tics
  61. Rolling neck
  62. Scratching entire body all over really fast
  63. Grabbing crotch area
  64. Hitting back of neck and back with hands
  65. Full-body muscle tightening, which causes me to slip down in my chair and hold the position
  66. Rubbing feet together in bed
  67. Jerking body upward in bed and just jerking all over the place in bed (fish-out-of-water tic) … Oh gosh I haven’t even gotten to the vocal tics!!!
  68. Screeching sound
  69. Forceful “Huh” or “Heh” sound
  70. Bird-chirping sound
  71. Whistling
  72. Loud sniffling
  73. Slurping sounds
  74. Gasping
  75. Taking in sharp breaths/breathing tics
  76. Clicking in back of throat
  77. Loud high-pitched noises
  78. High-pitched tea-kettle noise
  79. Hitting bottom of hands together forcefully
  80. Hitting feet together
  81. Forceful coughing so hard that it makes the muscles in my back hurt and gagging as a result
  82. Clearing my throat
  83. Grunting noises
  84. Air swallowing
  85. Biting my lips
  86. Licking my lips
  87. Picking my lips
  88. Sucking in the side of my lip to make a pucking sound
  89. Hiccuping noises
  90. Squeaking noises

Wow! And if I add it up....drum roll please.....I have gotten rid of about about 36 tics!! Now that's not to say they'll never come back or start up again or become more active when I get stressed or am around others with TS, but in my normal everyday life I am living with 36 less tics! I'd say that's pretty darn good! The ones I am most happy i've gotten rid of are the ones that were painful such as hitting myself in the chest and stomach. I still have tics that get painful sometimes, but I have a lot less tics that cause me pain and they happen less frequently.

To be fair, I have added on some new tics since my Junior year of high school that are not on the original list such as nodding my head forwards, brilling (that's what I call at least, but it's when I make a sound like brrrr with my lips and also make a noise with my throat at the same time), a squeaking noise that I make when i'm also sniffing (my CBIT therapist and I call it the squeak-sniff), and some others, but all and all I am doing very well right now. I still have tics every day and they are still noticeable, but they are much more manageable and much less painful.

I am still continuing to work with my therapist on my tics in order to help them become even better than they are now hopefully. It's still a work in progress, but we have moved our appointments to be less frequent now that my tics are under better control and now that i'm more independent with doing my CBIT homework/ competing res ponces.  I will continue to update on how it's going and if anything new happens with CBIT :) 

Saturday, February 14, 2015

Valentines day! :)

Happy Valentines day everyone! What are you doing to celebrate? I'll be spending valentines day with my amazing boy friend who accepts me, tics and all. Although I haven't been ticcing around him a lot (a combination of suppressing and the fact that my tics have decreased a lot because of CBIT), he knows I have tics and it doesn't change his opinion about me.
Yesterday he gave me an amazing compliment! I was telling him about volunteering with the kids at the hospital and how they seem to like me and he said "Of course they like you! You're so laid back and sweet. You're the kind of person who a child would naturally feel comfortable with and open up to". I so appreciated his compliment! It made me feel great and so special smile emoticon

Tuesday, February 3, 2015

Telling The Guy I'm Dating About My Tics! :)

Well I finally did it! I told the guy i'm dating about my tics. It's a GIANT weight off my shoulders, and it ultimately wasn't that big of a deal at all. I told him last night very casually while talking about camp. We sat down to eat some dinner and when he asked how my day was I told him it was great because I sent in my application for my 3rd year as a counselor at the camp I've been volunteering at in the summer. I had told him a little about the camp before, but this time I went into more detail. I told him that I'm looking forward to seeing all my campers who i've made such close bonds with. I told him that I bond with them and they really look up to me because I had tics when I was younger too, know what it's like, and am able to give them advice and be an older role model who has been though what they've been though.

I also told him that I still have tics, but i'm able to suppress/ hold them back more than I was able to when I was younger. I told him that it's like a cough or a sneeze, you can feel it coming and hold it back. I told him it's kind of like when you're in a movie theater and don't want to make noise so you try not to cough, and then when you get out of the theater, you just cough a lot! He said he didn't know it was like that. I told him that's why he hasn't really seen me do any tics and he agreed that he hadn't noticed anything and said he didn't know I had tics.

He was really great about everything I told him about my tics. He was very understanding, very positive, and even asked me a question ( I love when people have the courage to ask questions, instead of just sit there, smile, and nod). He tried to be compassionate and sympathetic by telling me that sometimes his eye twitches so he knows what it's like to not want other people to see that, but that ultimately you can't control it, so you shouldn't be embarrassed. He also said that he understands that people might judge you when they shouldn't because you're twitching or moving , but they shouldn't judge you because its not something you can control.

When I was telling him I made sure to stress that it wasn't a big deal, that my really good friends who've seen my tics a lot say they don’t even notice it anymore and I also made sure to tell him it's made me into a more compassionate person and understanding others differences.

After I told him, we studied together and when it was time to leave, I walked him out, he kissed me goodbye, and told me he would text me the next day. Sure enough, he texted me today and asked me if I wanted to go out to dinner with him. Dinner tonight went well and I felt much more relaxed around him. I am so glad I told him. I feel like now I can be so much more invested in the relationship and be myself more. I also now know that he is accepting of the fact I have tics and still wants to go out with me. It's still going to take me a while to actually feel comfortable ticcing around him, but i'm getting there! This was a huge step for me, and I'm so glad it turned out so well. Thank you to everyone (shout out to Brandy especially!! You helped me so much in terms of taking this step!) for supporting me through this and helping me to have the courage to tell him. I feel so relieved and happy. Everything in my life is just going right :) I am in such a good place right now, I couldn't ask for anything more. I feel so blessed :)