My Tics
Until now on this website, I've focussed on my son's experience of TS, rather than my own. It's only since he was diagnosed though, that I've learned so much about myself. That discovery came very slowly. There were a succession of small lighbulbs going on, rather than one sudden blast. 2 or 3 years on then, I finally know and understand myself - and my 'habits'.
As a child, I don't remember having a lot of tics, but even now, I am most often unaware that I'm doing them. I am much more aware of them now, than previously.
I had many 'habits' as we called them, but not many would qualify as tics. Thumb sucking, nail biting (and surrounding skin, until bleeding), skin rubbing (that seemed to be the one that I remember getting told off for), teeth grinding. I can remember snorting in my teenage years - that resulted in my friends forming a club with my snort as the general greeting! Smelling fingers, picking, and hand and feet movements. As a young child, I was called "funny face" but I have no idea whether this was due to any 'habits'. I remember quite a lot of obsessive/compulsive behaviours - for example playing two ball against the wall, and having to do it a certain amount of times to stop some catastrophic event from happening. Other OC related things like distressing thoughts popping into my head, and suddenly becoming obsessively religious. My thoughts and anxieties would dwell on distressing thoughts such as the 2 main worries I remember from that time - being buried alive, or spiders breeding in my brain. I counted everything too. Symmetry was important to me. I can clearly remember times when I, for instance, knocked my elbow, then turned completely around, and then deliberately knocked the other elbow in the same place. I can remember thinking how crazy I was to do things like that.
That then was my youth, although I still do a lot of those things.. I don't doubt there were many other 'habits' than I can't recall now. My purpose though is simply to ascertain that what I do now, started a long time ago.
Now? In recent times, these are some simple tics that I remember: tutting, eyebrow lifting, mouth twitching, bunny nose, humming, squinting, flicking eyebrow with finger, tongue clicking, arm waving, leg shaking, head jerking, head shaking with eyes scrunched, eye opening wide, sticking out tongue, blurting words inappropriately, eye rolling. However, without thinking about it, I usually only do these when I'm alone, or get up to move from one room to another. Without trying, I guess I've learned to suppress them until away from others. The only one right now that I seem to not suppress and do very often is the eyebrow lifting. Even at home my children don't notice my simple tics, as I do them when I move around, from room to room - and strangely, especially when I go into the kitchen. At work, again when I move from room to room - and the lift! Wow - if only there was a CCTV camera in that lift at work! I do my most bizarre and energetic tics in there. Driving too - alone in the car after I've left work. Sometimes I will blurt things - thoughts that enter my head - find myself saying them, then wondering where it came from. It's invariably completely out of context and may be utter nonsense. There have been times when one recurring word or phrase has kept bluting out - and occasionally these words/phrases have been offensive. Again though, I've not done these loudly in public - if I'm with others, they'll be quiet. Mostly, it occurs when I'm alone. Occasionally, I find myself ticcing loudly and I quickly look around to see if anyone heard.
Those then are the simple tics. They occur singly, or in a flurry. My other 'habits' are something else. They're easy to separate from those I've talked about, because these are almost constant. They are all orchestrated to some rhythm in my head, or to my tinnitus (noises in ears). Odd. Earlier as I sat at my computer reading webpages, I became aware of what I was doing. My right hand was occupied with the mouse (normally it too is very involved). My left thumb as rubbing each finger of my left hand in turn - with quick circling motion (my hand and finger movements can vary - tapping, drumming, circling, rubbing). A rhythm was going on in my head. My teeth and jaw were moving from side to side. Both feet and ankles were working together, but in opposite directions - each int turn, in a circling rhythmic pattern. The muscles of my buttocks were clenching, each side in turn. Mind, jaw and teeth, hands, buttocks, feet and ankles - all moving in synchrony, orchestrated to the mind's rhythm/counting. It's not always those muscle groups - others can be involved - such as the muscles around the knees. I've been reliably advised that these movements are complex tics. Even my finger smelling is not so simple - I smell the index and middle fingers as they circle my mouth in a figure of 8 pattern, while my thumb rests on my chin.
I prefer to be fairly active in the company of others so that I'm better able to mask the movements. If I'm somewhere that my movements are likely to be noticed, I will keep my legs crossed and sit on my hands. The movements don't stop - but I am able to control them, so that my feet movements are smaller, if I'm sitting, my bum twitching isn't noticed, my hands will continue to move - but the movements can vary, and to satisfy the urge, the movements can be very small, and barely perceptible to others, even if they were looking at them. Most people will only comment that I'm a bit fidgety. They have no idea of the concentration, effort and level of control required to maintain that image. There are some more observant folks who do notice some order to my movements - and if they imitate me in fun, they show my feet moving in exaggerated figure of 8 patterns while smelling my fingers - also in figure of 8 pattern.
Those complex tics then are near constant. I am almost always doing them. If I stop, I feel very uncomfortable. There is a physical sensation of unease, of restlessness, almost a pins and needles type feeling. To satisfy that urge, I perform the orchestra of movements. Sometimes simply clenching the muscle group will help for a short time - eg. making a tight fist will briefly satisfy the feeling in my hands. Normally, I'm not aware of what I'm doing. But I'm probably more aware than ever before of what I'm doing. My present job too requires more control and effort than ever before to hide these movements.
There are other 'habits' that I'm not sure how to define. My finger writing. Very fine movements of my index fingers where I write out either my thoughts, or what others are saying. I'm usually not aware I'm doing it until it's well under way!
I have these movements from the moment I wake up, to when I go to sleep. I stop them only when I'm absorbed in some task. I like to even things up too - I will do a series of movements with one hand, then do the same with the other, or both together. I have hidden my “habits” very well over the years, and most people put them down to my excess energy. I'm frequently told "BE STILL!", and described as hyperactive (and yes, I believe I have ADHD symptoms too).
Since creating this website, I have been calling our TS 'mild'. I still consider my TS to be mild, I suppose simply because it hasn't been that obvious to others. If I counted my tics though, I probably tic many thousands of times every day. But it hasn't stopped me enjoying life, or doing reasonably well in my personal and professional life.
