From someone about 30 days pull-free:
Well I almost ruined everything lastnight. I had a horrible day yesterday and by the time I was ready to go to bed I was going nuts inside. Stress, anger, sadness... and seriously wanting to pull my hair.. I couldn't believe that I was having thoughts like "who cares?" Especially after all the hard work I've been doing to stay pull free... Somehow...luckily I managed to force my hands to my sides...and slowly calm down. I was crying by the time I realized how close to pulling I had come...pushed the guilt and anger at myself down and tried to fall asleep. I am so amazed at how much I want to pull sometimes. I mean at times I just want to do it for no reason..just to be doing it...like it will be some magic cure for my depression and sadness. But I know it will just start another vicious cycle and get me down even further. Anyway I did it...I stopped myself..I just pray I can keep doing it, i'm coming so close to a month pull free...
From someone who was pull-free for about ten days, someone who will soon pick herself up and brush herself off as she knows she should, but who right now is experiencing (and communicating) a very common result of the pulling.
I'm on the verge of tears... Back to Ground Zero. Tonight I just couldn't help myself. I tried everything. I wore my hat...took it off. Used rubbing alcohol...didn't work. I played with my pencil, my eraser, my paper clip...put them down to pull my hair. Tried talking to my boyfriend about it...he was in a bad mood. Scratched my head vigorously to stop the itching...still itched. Told myself "NO!!"...I said "Shut up." I pulled deliberately. I'd been doing so well. Then, I had this moment of...panic? anxiety? I don't know. I just felt this _tension_ I've rarely felt before. I pulled off my hat and pulled...just one. That's all I meant to pull. Just one. Then I felt so much better. Actually, physically, better. I decided it would be worth it to lose just, oh, say 15 hairs if I was going to feel _that_ much better. Then I started thinking about my resolution to not pull. And I felt guilty. The guilt made me anxious. The anxiety made me pull. And around and around I went. All night. Around and around. Okay, now I'm crying. I know this is all about picking yourself up, dusting yourself off, and trying again. Right now, though, all I can do is cry. Hair that had been growing for months is now all over my bed. All over the floor. All over my books and notes. I see the hair lying around, and I feel so worthless. I wanted so badly to stop. Just to stop. How can I want to pull and NOT want to pull at the same time?? Why is this so hard to control?? I'd take it back, if I could! I'm sorry. I'm not usually like this. Maybe tomorrow I'll feel better. Then again, maybe not. Right here, right now, I just want to curl up in a little ball and wake up when this is all over. Trich is just some bad, 11 year nightmare, right? Logically, I know... I know I'm not worthless. I know I'm not a failure. So, why do I feel so terrible? I don't even know how to describe it, except as a dull, hideous, dreadful, aching, sobbing, sick-to-my-stomach type of self-loathing.
One of the messages of the bulletin board is that the feelings of worthlessness are just tricks your brain is playing on you. If you recognize them as tricks and practice getting past them more and more quickly then that is a kind of success, which can ultimately help you stop pulling altogether (except possibly in times of unusual duress, when the ability to forgive yourself will come in handy again and help you not utterly lose control).
Some words from someone who has been "persistently pull-free" (or "ppf") for 13 months:
Here are my thoughts on how I got to be
persistantly pull-free (not all perfect) for 13 months after 37 years
of pulling using no meds or therapy other than the invaluable support
that I got here. (I don't think that this makes me better or worse
than those who use meds and/or therapy. I support ANY way that we can
all start to feel better about ourselves.)
First - I began at a time of my life (March 3, 1997) that was not a
high stress time. My kids are not babies anymore (20 & 16). My
marriage is stable. (At times I could kill him , and other times I am
so grateful to have him.) I was not employed. (This is a neutral
factor, I think. A job you enjoy could be helpful. An extrememly
stressful job would make it harder.) We are not rich at all, but we
live within our means and (knock wood) have no major money worries.
And, I was basically content. In other words, I had time to really
make this a major goal. Others here have also become ppf with major
stresses going on in their lives, but I think it helped me that some
days I could literally just collapse from the stress of the fight.
I had managed to make myself pull-free for short periods in my
life before, so I knew that I could do it. (Many here had never had a
single pull-free day and now have had many. there are tricks for
getting started in the FAQ and at Amanda's site.) Like many of us, I
had begun to pull again so many times that it had become hard to see
what the point was of trying again. Why get my hopes up again, only
to have the deep depression that comes with yet another failure? Not
putting ourselves through this is roller coaster of hope and despair
is one way that we protect ourselves.
It was reading this board, actually meeting and talking to the
first real person I ever met with trich - thanks, [name deleted] - and a
couple of long range travel plans that gave me the energy to cross
that border between despair and hope -one more time. It was March
and my hubby and I were planning a romantic get away to Europe the
following August. This was to be our first trip alone in 20 years.
Five months was far enough away to not put that pressure that we all
feel about wanting hair now and close enough to get me moving. We
were also aware that a family wedding in India was going to be coming
up within the next year. My last visit to India (10 years ago), I had
one-inch long hair with thin spots. I wanted to look better this time
if that was at all possible. These things did motivate me without
causing me so much immediate pressure that the stress would be too
much.
I tell you these things because I don't know how much they
influenced my ability to become persistantly pull-free without meds or
therapy. I was motivated but had no immediate pressures.
I learned some neat behavior tricks from people on the bulletin
board. [Name deleted] urged me to get a brush and keep it handy for when I
felt like playing with my hair or my scalp itched. I got several
small round plastic brushes with soft rubber handles (I really like to
feel those soft rubber handles.) and kept (still do) them everywhere.
By the phones, in the consoles of both cars, in the family room, in my
purse. The main use that I still have for them is in the car. I love
the way they massage my scalp and it lets me do something with my
hair without actually touching it.
I did think about the situations when I was tempted to / or did/
pull. This helped to become more aware of future times to be careful
around.
The most important change for me was a mental one that came in the
second or third week of being pull-free. It was when the realization
that trich was really not ever going to go away and if I wanted to not
have to deal with bald spots anymore - I was going to have to learn to
stop pulling. There was not going to be a white knight riding to my
rescue. Many years ago, my best friend lost her husband at 37. She
was a liscensed social worker who specialized in grief counseling.
For six months after his death, she got up each day and went on with
life. One day at about six months, I said - "[Name deleted], I hope this
doesn't upset you - but, aren't you ready for this nonsense to end and
for [name deleted] to just walk back in?" It was at that point that this deep
stress sets in because you finally accept that it is real and it is
not going to change. She said that those were her feelings exactly.
She knew all of the steps of grief but, even knowing them, her body
still had to go through all of the tremendous emotional strain of
losing someone. I went through that when I greived for the lost
dreams that trich wasn't real and would just stop. The emotions were
real and very, very powerful. It hurt all over and in the pit of my
stomach.
This is not going to go away. Ever. If I don't learn to cope
without pulling my hair, then it is not going to happen. During this
period, I had flashbacks to my childhood, to events that I had not
thought about in 40 or more years. I was exhausted all of the time
and I cried often. I came here, to this board, and I posted my heart
out - and people listened. I screamed how much I HATED having this.
Some days, I was barely more than a zombie. Just reading what I just
wrote - helps me to understand why it is seriously important for
anyone here who has seriously considered suicide as an option to get
professional help before trying this. I really wanted to get this
under control if I could, but as someone who, after much anguish,
decided that even something like Prozac would not be worth it even if
it stopped the pulling - I was not really at risk of suicide during
this very stressful time. I already knew that a good, happy loving
life is possible with trich. I just wanted to have more, if I could
do it without meds or therapy.
Coming here kept me going through just one more day. I focussed
totally on just getting through that day. I refused to let in the
thoughts of why should I be putting myself through this because you
know that you won't succeed. I think that [name deleted] being six months ahead
of me was a significant thing. She was already posting about things
getting much easier to keep in control. That gave me the all
important ingredient of HOPE. Also, [name deleted] had organized monthly
support group meetings in our area. I found them stressful and at
times depressing, but they did also motivate me. I kept hoping that
if I just stayed pull-free for that month - I would look astoundingly
different at the next meeting. That did not happen for me, but the
group did motivate me. My family, while loving me, was definitely not
interested in watching my hair grow. They did not/ can not understand
what fighting trich is really all about. They are happy for me, but
are uncomfortable discussing it. :]
Somehow, I made it through that period and came out with a new
calmness and peacefullness. As depressing as it is to really, truly
accept that the urge to pull is not going to go away, there is a
peacefullness that comes from this acceptance too. Gone were false
hopes that it would just dissappear, or that there was a miracle pill
that would take it away. I made my peace. Illness happens. Not my
fault. I accepted that - I - have a chronic illness. YUCK! And,
once I accepted that, then I got on with the business of learning to
manage it. It is hard to accept trich as a real illness because it is
invisible - they cannot pinpoint it yet with a blood study or an
x-ray. That allows us to fantasize that it might just go away. For
me, really accepting that it is not going to go away and that it is
real, helps me to stay on track when I want to pull.
I love to feel my hair. My hands just love to feel it. Then
they start searching for that strange hair. Then they want to pull it
and then they want to pull others - even now. I have now become so
fully used to just keeping my hands away from my hair and so aware
when my hands are touching it that trich no longer causes me stress.
It is not a daily battle at all. I am aware that I can't touch my
hair without danger but my head does not itch, and I have no urges
to pull my hair if I don't go feeling around in it. Every so often
though, even now, I get a gentle yearning to just have a good
pull-spree. It was a comfort and my mind has not forgotten that. This
bulletin board helps me to stay grounded at those times. Life was
very good before I learned to manage this - it is just nice to have
hair now too.
I'm glad you all are here. Trich is so hard to fight because it
is totally unforgiving of slips. That is why I often compare it
to diabetes. Insulin dependent diabetics cannot ever take a night
off from being aware of their illness either. That's life. The
longer we fight it or feel sorry for ourselves, the longer it
takes to become productive. That any of us are able to conquer these
urges and get to the part where it no longer dominates our lives is a
miracle to me. Remember that, when you feel down about a slip. Life
can be very good even with no hair. We are not nuts or lazy. WE have
an illness called trich and it is very, very hard to fight. We should
all be very proud of ourselves. We have a very obscure, difficult
illness that gets no respect.
Tear time. It is soooooo good not to be alone anymore with this
weirdness called trich. Take things one day at a time. Sounds so
trite but it is so important in fighting trich. A long time ago, I
started fighting this one day at a time and now it is 13 months later.
Another note from the same poster, talking about herself and a particular friend on the board:
The greatest joy [we] got was when we slipped and learned that we really could get back in control again without going all of the way back to ground zero. Try very hard not to let your slip give you and excuse to pull. This is not about perfection - it is about persistance when we feel defeated. [...] Keep on hanging in there. Think marathon, not sprint. This is a long distance battle. Glad you're in the marathon with me.
I tried to find where this previous poster specifically mentioned during which months she had slipped and how much pulling had resulted each time. I think there was once at about six months when she pulled about ten hairs a day for a few weeks before she got back in control. However, I don't see it so I will end with her thought on how relatively easy it has become to avoid pulling in general. I will also note that this is a person who believes that though there will always be some level of struggle in her life with this, the struggle has become much easier and is well-rewarded by long periods of being urge-free.
After a year of being in control of this disorder, I am not tortured by urges to pull, itching head, etc. But, if I let them, my hands would still be in my hair all of the time. It is just that, now, it has become almost like a reflex thought. When my hands touch my hair - my brain now sends an automatic message that says, "Hey - get away from there!". It is so automatic now that it does not stress me out at all. If I let my hands stay in my hair, even now, a year later, they will still search for that brittle crinkly hair and if they find it that hair will definitely still drive me crazy. If I give in and pull that one hair, then I will still be tortured for hours with the urge to find and pull another. I know this, so, I have learned to listen to that buzzer that goes off when my hands touch my hair. It is important to reset the alarm every morning. :) Trich may not go away, but it can become so automatic to not pull that it is no longer stressfull.