It’s perhaps not the sort of thing going round the head of your average 3-5 year-old but ‘red, blue, yellow, green’ was what was going round mine at that
age…hundreds of times a day.
I can’t say how long it lasted for really, as time does tend to get warped at that age and you can’t always remember everything either. But I can tell you it went
round my head for a long time.
‘Red, blue, yellow, green, red, blue, yellow, green…’
On and on.
At first I didn’t really pay much attention to it. Things often go round your head don’t they? ‘Argh! I’ve got a tune stuck in my head!’ I should think everyone has
said that at some point in their lives. It was like when a tune goes round your head – I wasn’t hearing things, but…
Probably a week after it started I wondered why it was still in my head. It was certainly starting to annoy me (but then a lot did at that time anyway).
Probably a couple of weeks after that, I wondered if it was ever going to go. And not only was I repeating the colours in my head, I was having to use the colours in
that order. Colouring in, playing with toys. I can think of three sets of toys I always used in the same order.
I think one of them was a set of plastic bears in the reception class (or was it nursery?). Red, blue, yellow, green, all in a row on the table.
We used to have a set of four plastic boats at home for use in the bath and, yes, you’ve guessed it, there was a red one, a blue one, a yellow one and a green one.
They joined together in a line and guess which order they had to be joined in!
We also had a wooden train set at home and, although the carriages weren’t just red, blue, yellow and green, they always had to be played with in the same order:
train, blue coal fender, red carriage with a strange black roof, small yellow carriage with a curved roof, red ‘tippy’ truck, yellow ‘tippy’ truck, green ‘tippy’
truck.
Later on, the sequence got longer (just what I needed…not) and changed to ‘red, blue, yellow, orange, green, pink, purple, (orange), white, grey, brown, black’. The
second orange is written here in brackets because it wasn’t supposed to be there but I kept saying it when I said the sequence in my head which, I found, meant I had
to repeat it even more times just to get it right. It went on and on…
Later on, I think it was in year three (6-7 years old), there were several packs of dominoes, where each pack contained a set of a different colour. These,
inevitably, had to be set up in the ‘correct order’ (We didn’t use the dominoes for playing dominoes with, we used them for setting up in a long line all over the
table and pushing them down again).
Also, when making some things out of Lego, the layers would need to be built up out of first red, then blue, and…you get the picture.
Later, (I think it was after the colour sequences started) I don’t know when, but in primary school at some point, I began to need to touch things. Now you may be
thinking ‘but everyone needs to touch things’ and the answer is yes, everyone does need to touch things, but not in this way. I felt the need to touch certain things
in certain places in certain ways.
Corners and edges of things, marks, dents and scratches on surfaces things people had just touched, all sorts of things – if they ‘needed’ to be touched in this way,
they were. They were to ‘even things up’ if they had been touched on one side, for example. Basically I touched it until it felt right and didn’t need to be touched
anymore. The ‘touching’ consisted of touching, stroking, feeling and concentrating and the feeling of needing to touch things became known as ‘feeling niggly’. When
I felt niggly, it was a feeling inside which I can’t really explain right now, but please bear with me; it should become clearer as you read on.
Often, if the teacher wiped the board and they left some marks behind (and they often did), it would be extremely niggly and the feeling inside would build up to
horrible levels (as it did with any situation where I couldn’t touch the object) and it felt like I was squirming inside (which isn’t a very good way of putting it,
but it’ll do for now). This and a realisation that touching things would look silly if it was noticed led to the second-rate system of moving a hand in front of
my face, so it lay between my eyes and the object. This method of ‘distance touching’ did not completely replace the direct touching, but was a method I used when I
couldn’t touch the object, either due to being at too great a distance from it, or when I thought directly touching the object might be noticed. In fact, I ended up
‘distance touching’ things a hell of a lot, but it was always disguised it as a scratch of the face, a brushing of fingers across the nose or some similar action.
I also had to ‘even things up’ on myself – for example, if I scratched myself on one arm, I’d need to repeat it on the other arm until it felt right or if I touched
the carpet with one hand, I’d need to touch it with the other hand until it ‘felt right’ and ‘even’. I also found I needed to move things until they ‘felt right’,
for example the chair I was sitting on needed to be moved a tiny bit this way, then a tiny bit that way, etc. And paper, for example, sometimes needed to be moved
until it was parallel with something else, eg. the edge of the table, not because I wanted it to be parallel, but because it didn’t feel right until I did it. (This is
all very hard to explain exactly).
The mental colour ‘chanting’ gradually disappeared and what a treat lay in store for me! Something else to chant. Lovely! Not. This time it was a nonsense phrase. I
won’t even try to write it down. In fact, I wouldn’t even try to say it; I can’t. In my head it sounded all stuttery and stoppy and starty and it’s virtually impossible
to say it accurately out loud. I’ve tried it, without success.
Actually, no, I told a lie, this phrase came before the colour chanting went. So I had two at once for a while, then the colours went. But the nonsense phrase
remained and went round my head for ages…and ages…
Now, by this time in this story, I was into secondary school and I’m not entirely sure if the phrase disappeared before I started secondary school or not.
But it doesn’t matter because when it did go, it was replaced by…another one. Joy!
It went something like this: ‘nn-nn-noway nn-nn-no ah-ah-I don’t know, nn, I dn, I dunno’ (but this is not a very accurate transliteration).
Then I suddenly found that when I did distance touching, I had to touch my upper lip with my tongue in a certain way at the same time as well. Then I did this while
looking at things without holding my hand in front of my face and it gradually took over the hand almost completely.
I also found after a while that I often shook my head slightly every now and then when the nonsense phrase was going round my head.
The nonsense phrase, it seemed, was occurring most often/started again when I saw something I didn’t like, or when I had thoughts I didn’t like. Sometimes it seemed
I didn’t even think the thoughts properly before I did it. Some of the time, it seemed that I was trying to ‘neutralise’ or ‘say no to the thoughts’ so that they
wouldn’t happen. Like (and this is a stupid example I’ve just thought up which I don’t think has ever occurred) for example: I look at one side of the doorpost
surrounding the door and it reminds me a bit of a bone because it is long and white and I think (or rather perceive) ‘bone(s)’. Then I realise the doorpost is a
horrible shape for a bone and just imagine what it would be like for someone to have a bone that shape and the nonsense phrase (‘nn-nn-noway nn-nn-no ah-ah-I don’t
know, nn, I dn, I dunno’) will start and keep going and I’ll do the slight head shaking thing and I’ll have ‘made sure’ that my bones won’t be that shape (even
thought I know that there’s no way that they will be and even though I know that doing the nonsense phrase, which comes automatically anyway, won’t stop it from
happening even if it could happen). Although it sounds long and complicated here, the perception part of it will happen in less than a second and will trigger the
nonsense phrase and the slight head shake. Most of the time, I don’t even realise there’s a trigger, but I think there is.
I hope this makes sense. It certainly sounds confusing to me!
There are two other things that are almost guaranteed to trigger this reaction – seeing a bald head (sorry blokes), and emptying a milk bottle of water when washing
up.
I don’t know why the bald heads, but with the milk bottle (and it’s only when it’s being emptied completely vertically and it’s almost always only when it’s a milk
bottle. Anyway, I always suddenly think of it as a blood transfusion bottle (don’t ask!) and I imagine the water inside is the blood and it’s pouring out really fast
with bubbles going up inside and in this way it triggers the reaction described, albeit not very clearly, above. Actually, I don’t think the milk bottle has
triggered a reaction for a while. Yay!
Ah, I’ve forgotten to tell you about ‘the voice’ telling me what to do. And before you get freaked out and excited, it’s not that kind of a voice, I mean I didn’t
hear things. Basically, it was my own thoughts ‘telling me what to do’. Stupid things like ‘pick up the toothpaste tube with your left hand now put it down again.
Now turn it over. Now open the cap, or the car will crash later’ and stuff like that all the time. Mostly, there wasn’t an exact bad thing that was going to
happen, I only had a vague idea/feeling, call it what you will, that something bad was going to happen if I didn’t do it. Every time it happened, I knew there was no
way anything bad thing could happen if I didn’t do what ‘the voice’ (my thoughts) was telling me to do, but I still had to do it.
One particularly annoying thing which happened several times (I don't know how many) when I was in bed and it happened several times (I don’t know how many times). I was lying there when suddenly I had this
ridiculous notion that if I didn’t get under the quilt completely with nothing sticking out and no gaps for the light to get in round the edge and lie completely
still and quiet for ten seconds, then Hitler would come and drop bombs on me. Now, I knew that Hitler wasn’t still alive and that if he was, he wasn’t going to
drop bombs specifically on me and that if he did, lying there in that state was hardly going to stop him. I knew this, but I still had to do it. So I did it for ten
seconds, then another ten just to make sure I had counted them right, and then some more to make sure I’d counted those seconds correctly as well. Often I even had
to hold my breath so that I was even quieter, so I didn't feel too good by the end of it. This happened several times (damn it) and I didn’t half feel a fool!
In about year eight or nine, I started to get this thing where I’d shrug my shoulders repeatedly for no apparent reason. It felt like the ‘touching’ thing, but with
my shoulders (this I cannot explain). I also started to frown in the same way – frown, stop, frown, frown, stop etc., just moving how I needed to. I found that I
could stop it for very short amounts of time but they always got the better of me. I got fed up of it. My shoulders were aching and I was worried people would
notice (one person already had), although they were much worse when I was on my own.
Sometimes, and I don’t like to admit this, but sometimes when I got really ultra fed up with my shoulders, I hit myself again and again really hard on the shoulders
because I didn’t understand why I was doing it and why I just could not stop. I was just very fed up with it.
In either year nine or ten (I think it was in year ten) we had one hour of DEP (development and enrichment program) a week. You know the kind of thing – learning
about teenage pregnancy and why drugs are bad. Well, one time, we had a session on mental health issues and we were asked as a class to name some conditions
involving mental health and someone on my table came up with Obsessive Compulsive Disorder (OCD). I asked her what it was. She said it involved things like, for
example, touching something, say three times before you go to bed and that it had to be done exactly right or they’d have to do it again. Well, that rang a bell! I
didn’t want to ask much more then in case she wondered why I was suddenly so interested.
Well, I looked it up on the internet but it didn’t quite seem the same as what I had; similar, but not the same. Plus what was being described was a quite a severe
disorder affecting many aspects of everyday life and taking up a lot of the patient’s time.
I was going to dismiss the idea that what I had was anything or that it had a name when I saw that there were disorders related to OCD. One of them was Tourettes Syndrome
(TS). I’d heard about it, but all I’d heard was that people with it swear involuntarily, but I soon discovered that only a very small percentage of people with the
syndrome had that symptom, but thanks to the media, that is what people think it is – that you swear all the time (and get angry a lot).
TS was really similar to what I had but not quite because I didn't have vocal tics. Then I found out about Chronic Motor Tic Disorder. Did I finally have a name for what I had?
Did I have a ‘tic disorder’ and did I have ‘tics’? So that was what they were called...
I researched some more about it, one thing led to another and I worked out I probably had ‘Chronic Motor Tic Disorder with Obsessive Compulsive Behaviour’.
Now, I’ve been saying all this so far in the past tense, but some of this still goes on. So some of it should really be in the present tense.
Here’s what I have at the time of writing this:
o nose twitching tics
o frowning/eye narrowing tics
o eye rolling/flicking tics
o mouth tics
o shoulder shrugging tics
o chest tics
o (don’t laugh) buttock tics
o leg twisting tics
o touching/distance touching tics
o adjusting tics
o ‘touching’ things with the cursor on the computer screen
o typing and retyping things on the computer
o mental tics - the nonsense ‘no, noway’ phrase and constant mental repetitions of sentences I’ve just read, heard or said either in my thoughts or out loud
o when I take my socks off and then put the same ones back on again later, I have to try to make sure I put the left one back on the left foot and the right one
back on the right foot, otherwise my feet feel ‘contaminated’ (not exactly in a germ way) by each other.
o (and some other similar tics/compulsions which are too hard to explain)
I sometimes ‘switch off’ from my surroundings when I tic or don’t even realise I’m ticcing/have just ticced. Once, when I was offered a crisp and I took it, I
suddenly did a ‘distance touching’ tic on it and I completely switched off from everything (I’m not sure how long for) and when I finally came back, it was kind of a
shock and I realised that the person who had given me the crisp and the person with her were both looking at me strangely. Damn, that was embarrassing!
What was also embarrassing was when I was sitting with my friend and talking to her as normal and she suddenly looked at me in a strange way. When I asked her what
was wrong, she wouldn’t say, so I asked her again and she told me that I’d just touched her knee. Well that made me confused! I had absolutely no recollection
whatsoever of touching her knee but I knew she wasn’t making it up and I guessed that it must have been a tic. That made the whole thing a bit more worrying – I mean
the fact that I had just done it without knowing!
It sounds like all I do is tic! This is not the case. Most of my tics are unnoticeable around others most of the time (I hope). They don’t occur all the time and
when they do, they’re not all at once. My tics also seem to get better and worse over time. I also seem to have more control over them than I used to. I don’t know
why they don’t seem to show so much when other people are around. I can tic badly in my room on my own but the moment I step outside or someone comes in, they become
more controllable and unnoticable
Here are some more things which I used to do but don’t do anymore:
o When I ate muesli, I used to have to eat the oats first, putting any fruit and nuts I came across to the side of the bowl. Then, when I’d had as many of the oats
as I could without eating the fruit and nuts, I had to eat the fruit and nuts in the right order. I can’t remember the exact order but I can remember that it started
with the apricots and finished with the dates. I know I was a slow eater (I still am), but eating muesli was ridiculously slow!
o I used to have a digital watch which had interchangeable animal fascias on it. These had to be lined up in a special order in my basket of things, kept in that
order and the animal was changed every day so they were used in a rotary system. Just because one of the animals broke, I could not use the watch. As far as I can
remember this is true. I don’t know how long this lasted for.
o I used to have a set of four jazzily coloured pencils. These had to be kept and used in a special order and I had to keep checking and rechecking that they were
still in the same order. This did not last very long.
o We used the old pram a couple of times for putting teddies in to give them a ride but not only did all the teddies have to be squeezed into the pram, they had to
go in it in height order! (This was a while ago. I remember feeling some sort of need to put them in this order, but how true this is, I don’t know. Anyhow, I
derived some immense satisfaction from doing it - a feeling of being 'just right'.)
o I used to have a collection of ‘Pound Puppies’ (plastic puppies from cereal packets). Whenever played with, these had to be lined up in a special order. I
derived some immense satisfaction from doing it - a feeling of being 'just right'.
o I used to find water from a tap switched on hard so that the water came out fast was dirty (although I’m not sure if it was when I drank straight from it. It
might just have been when it was put into a mug).
o I went through a stage (and only in extreme circumstances do I do it now) where I had to ‘kiss’ certain things. Thankfully I was able to suppress this tic
until I was on my own. Usually it was fabric (I don’t know why). ‘Distance kissing’ was used too.
o Very, very, very occasionally, the need to touch something because so overwhelming, I had to...(okay, this is embarrassing to tell people)...lick the object with
the tip of my tongue instead. For some reason, I think I only ever had to do it on fabrics and I could (thankfully) suppress this tic when with others.
o I don’t always have to do this any more; now it’s only sometimes I feel the need to do it, but discs, when put back in their cases or put into the machine, had
to go the right way up, ie. so their title was the right way up (obviously the shiny side had to be down!)
o This still happens sometimes, but I used to be scared of push-down taps in public toilets which, when put on, the water came out really fast and strongly. Partly because it 'felt dirty'.
Here are some more things that I have which may be linked to the disorder or its associated symptoms (but might not be, but which I’ll put anyway – why not?):
o fairly frequent (but not that often) sudden strange feelings and perceptions here are some past examples:
o I was on a camping expedition and I was tying a piece of string onto a branch and it suddenly felt so terribly important, like the entire importance of the world
lay within that string and the way it hung off the branch!
· I felt that I was looking back at myself from the future (which led to the realisation ‘this is my past’).
· I perceived/felt an apple in a cup (this is impossible to explain).
· I suddenly felt that I could fly (although I knew I couldn’t!)
· I thought/perceived that my drink could not be spilt. (This, too, is impossible to explain).
· Fairly common Déjà vu (but not all that common).
o (very rarely) sudden, involuntary, flashed words in my head which I can’t actually hear, but are like my own thoughts and are very clear. They are unwanted and completely
irrelevant to what I am thinking. These are the only three I can think of (because they were the strangest/most shocking) but there have been more:
· breasts
· boobs
· melons
Embarrassing!
o (very rarely) sudden, involuntary, flashed, mental images of strange things. I can’t remember most of these and they are too difficult to describe here.
o In the bath, I feel uneasy if the water touches the overflow and scared if the water touches or goes through the holes of the overflow while I’m in the bath. I
had trouble in that tiny holiday caravan bath, I can tell you! This, though, is less so now than previously.
o I am scared of swimming pool filters in pools other than my local swimming pool and any dark marks or shapes underwater, especially in water I’m in! I am
especially scared of metal filters. I missed my chance in primary school to do my fifty metre swimming badge/certificate test, which I was capable of doing, all
because they told me I had to swim past a huge brown metal filter at the bottom of the deep end!
o When we have Sainsbury’s caramel desserts, I have to have the one which says the name of the product on the lid otherwise it makes me feel really wrong and it
feels horrible. Why specifically that product? No idea.
o When I’m in a new place and I go to the toilet, I choose a toilet cubicle and use it, but if I’m in a place I’ve been to before, especially if I go there
frequently, I always try to use the same cubicle. I hate using the ones I didn’t go in before. It makes me feel uncomfortable so I always try to make sure I use the
one I was in before/usually use.
o I still use the colour order for some things but don’t still find I need to and it doesn’t go round my head. There’s one exception to this – I have a certain set of
books which are different colours. These must be ordered in this way.
o I don’t play on my Gameboy any more partly because I’m tired of the games and partly because I’m fed up with the sheer amount of tics I experience when on it:
· I feel extremely uneven because I can see the moles/beauty spots (call them what you want) on my left hand out of the corner of my eye and it drives me mad.
· I get a dramatic increase of tics involving my eyes. My eyes constantly flick off the screen.
· I get a dramatic increase of ‘distance touching’ (and touching and adjusting) tics all round the room.
· I get a dramatic increase of shoulder, hand and finger related tics.
· I get breathing tics.
o When I listen to music (usually through the headphones), I often get breathing tics.
o There are certain tics I only get when watching a film. It doesn’t happen every time I watch a film, but when it does happen, it’s usually the legs and buttocks
and after a while, trust me, they hurt!
o I used to always have to do this, but now it’s only sometimes I feel the need to do it – discs, when put back in their cases or put into the machine, must go the
right way up, ie. so their title is the right way up (obviously the shiny side has to be down!)
o Some hand dryers must not be used because I’m scared of the sound or because they start too suddenly. Push-button ones are better because I know more or less
when they’re going to start.
o This doesn’t happen very much anymore, but sometimes I’m scared of push-down taps in public toilets which, when put on, the water comes out really fast and
strongly.
Here are some things I wish I could ask my friends to take into consideration (but can’t make them follow!). They may be linked to the disorder or its associated
symptoms (but might not be – I’ll put them anyway, while I’m at it. Why not?):
1. Please ignore my tics. Do not draw attention to them or imitate them. If you have a polite question you would like to ask me about either tic disorders, or
Obsessive Compulsive Disorder, you may ask me. If it is not polite, keep it to yourself.
2. When you touch something I can ‘feel’ it mentally. Please don’t excessively and blatantly touch one side or corner of something in my line of vision – it
hurts. You touch something and you touch inside my brain.
3. I may appear not to be listening. This can be because:
a) I’ve accidentally switched off because I am ticcing and I’m really not listening.
b) I am listening but I’m not looking at you because I’m ticcing so it looks like I’m not paying attention.
c) I’ve accidentally switched off because I tend to do that even when someone is talking to me. I can only apologise. I am interested in what you are saying, but I
can’t always keep my mind focussed on it - unfortunately I often drift off without taking in anything/putting it on hold. I don't mean to, but please realise that
when I say 'yeah', 'uh-huh' or similar things when you are talking, what you have said still might not have been taken in - the sounds are an automated response.
I do this a lot.
If you think I’m not listening, just ask politely.
4. If I flick my eyes around while you are talking to me or I am talking to you, it doesn’t mean anything in most cases. I try very hard to control this tic but it
often just comes out. (I'm not entirely sure what this looks like though - it may just look like blinking to others).
5. Please be patient if I ask you what you said several times. I can usually hear perfectly well, it’s just that what you say isn’t always recognised as words
straight away. This is why I sometimes take a while to answer a simple question – I am trying to work out what you said. It is also why I often say ‘pardon?’ and
then answer straight away before you’ve had a chance to repeat what you said. If there is a delay, it’s sometimes also because I tic/drift off and what you say is
‘put on hold’.
6. If I don’t pick up on what you’re feeling, it might be because I was ticcing or I drifted off and missed your body language/social cues. Apologies.
7. I might touch you in an inappropriate/strange way or in an inappropriate place and carry on as if nothing had happened. Please don’t be offended if this happens.
I have performed a complex tic without knowing it. Tell me politely and I will apologise and try to be more aware of my actions. Unfortunately because I am unaware
when I do this, I cannot prevent it from happening although I have not been known to do this on a person many times at all. Anyhow, I give you my sincerest apologies.
8. Please don’t touch me in a social way. It usually makes me feel very uncomfortable and I don’t always know how I’m supposed to react. More importantly, you might
also make me feel ‘uneven’.