I don’t normally talk about how my TS effects me, lately it’s been easy for me, I’ve coped well with the tics but it’s been my depression that’s been bothering me, up and down like a yo-yo. Sorry I haven’t been around much but I have, hands up been struggling, chatting (or rather crying) on the TA helpline I do realize that I find it very difficult almost impossible to ask for help, I am a control freak. If I don’t know something I go and find out, however needing help is different, I’m needing help in both the emotional support sense (if you see me give me a massive hug I need it) and practical (make me dinner also please or give me a lift in your car or keep me company on the bus or train to where I need to go to please). I am in pain, looking left if very difficult, as well as cracking my neck (aprox every 5 mins) Mr Susan (head jerking side to side tic) has also made a comeback, accompanying my coprolalia often my arms jerk out sideways like a baby bird trying to fly, or my head jerks backwards as though the ticcy beast within wants to give me whiplash or my legs (and sometimes arms too) want to do some ridiculous Hong-Kong Phooey move, which the other day landed me on the village shop floor in front of the chiller. In addition to this my mood has taken a nosedive, which is the truly dangerous part. About three weeks ago my mood plummeted so I called my CPN, I couldn’t get very far due to my dodgy foot so that was that, he suggested I come to Nuneaton to see him, but as walking to the shop was hard enough walking 15mins from Nuneaton bus station just wasn’t going to happen as even though I asked for help, it wasn’t forthcoming, other people have their own lives to lead rather than ferrying me around. So, my relationship as ever with my CPN remained via telephone, so I called him every couple of days, then I get the news that my psychiatrist was going on holiday and my appointment (which was today) would be postponed until mid-September (gggrrrrr – just as I need him), he deserves a holiday anyway. The weekend goes by and I’m fairly stable, Monday comes and goes, I’m ok, Tuesday and I’m down again, I call him, he’s not there. Wednesday, I’m actually feeling suicidal by this point; I talk to my partner and tell him he responds “everyone feels like that, get over it”. No risk assessment considering my past exploits. I really don’t feel safe, I feel as though I could die and nobody would notice. Thursday, still no CPN, well he’s a busy man. Friday, I’m told he’s on holiday, finally I get an answer, I’m still feeling very down, I buy the wrong loaf of bread and get shouted at, could things get any worse, I call the crisis team after 6pm when they start, unbeknown to me my partner listens into my call and says to me afterwards “you’re not a burden, but it is tough when you don’t do anything around the house and I have to do it all.” I’m glad the crisis team are coming to see me tomorrow. (Saturday afternoon) to assess me. (???!!!!!!!)
Monday is when things start getting tricky. I go to Birmingham as usual and I enjoy the art session, I’m kept busy and on my toes which is what I like. My trip home however things start going badly, I stop buy to buy some Deep Heat and some coffee, the young boy who serves me finds it difficult to stifle his giggles as the cop kicks in, I let him off, I suppose it is startling and unusual I say nothing about it but the ticcy beast within when I hand over a load of loose change does a major bad bra tic and the money flies everywhere. Now he’s got to pick up loads of small change, hahaha. I go to get my train, jerk, jerk, swear, swear, arms everywhere, take to my seat, put some music on and get out some knitting, this helps minimize the tics although some are still going on, a pleasant smelling young man sits next to me after putting his case on the shelf above. A couple of minutes later once he’s got the measure of me he gets up, takes his case and moves elsewhere. This happens a LOT, my bag often gets a seat to it’s self, in reality it’s an advantage but some days it just feels insulting.
I get back to Coventry and to my bus stop, the street in the city centre where my bus stop has a slightly “seedy” character about it, several bookies, a McDonalds, with bouncers and 3 pubs, again with bouncers. My tics go for it, some may call it a “tic-storm/fit/fest” (could we have an explanation from a Doctor please as this term is popping up quite a bit please) but it probably isn’t as I can carry on moving forward in a wiggly line whilst bumping into people making my way though the old guys outside the bookies that smell, the kids outside the McDonalds that enjoy a spectacle and the drunk people having a fag outside the pubs. Also on this street there is also at least a couple of PCSOs not far away, today there where about 3 of them, a police car and a police van, so this triggers off a load of pig related tics, thank God I am left alone despite the arrest of an older guy whose drunk and disorderly and a big mouthed teen. This is at about 5.30pm. My tics are still going for it, have you noticed who tics can ensure that there is always a generous amount of space around you. The bus arrives, I get on, tic loudly right next to an unexpecting woman, she literally jumps out of her skin, I feel quite sorry for her. The bus driver also gets it also, but he twigs, I am the woman with Tourette’s who goes on the 16, the bus is pretty full, I try and block them out with music a couple of gobby teenage girls shout out “aahh look at the f****n’ crack head!” (this is their new insult, a couple of years ago adults were insulted by being call “peado”). I try to suppress (moi? Suppress?) yet the sweariness wins much to the shock of the woman in front who stares, agape for a few seconds, I stare back, her eyes are popping out of her head, I wonder if that when she was a child her parents told her off for staring at people.
At last, home sweet home. I need a cuppa, shake, jerk, jerk, OOOOOOWWWWW!!! I scald myself, a couple of minutes under the tap helps; I use my cup with a lid. amazon.co.uk/gp/product/B00...
I ask about dinner, my partner’s eaten already, I hint about him cooking for me. It doesn’t work. Some simple fresh pasta will do, but again, I scald myself.
Yesterday (Tuesday) I have eaten, but I fear that for the time being this is how my eating will be. 12pm, he cooks himself a breakfast, scrambled eggs toast with bacon, sausages, beans and tomatoes, I get toast, scrambled eggs and beans. Later for dinner he makes himself chips and beans, he makes some for me also. At least it’s food, I can a problem, kick me up the backside here if you think I’m spoilt but his diet is quite ……dull, when he does make a curry he can use up to 8 chilies, that’s pointless, you may as well just chew a fresh chili. Pasta…pasta is for girls, he ate pasta once in the 70’s which was probably from a packet with some powdery chemicals and overcooked into a mush. Not proper pasta made by a school friend’s Neapolitan Nona. Also any problem that I have be it a pain from my tics, suicidal feelings, tiredness, he’s experienced it. I ask for a massage (I know I won’t get it as he avoids any physical contact with me) he’s in pain too, I tell him I think it results from him sitting at his desk all day he replies “I’ve been sitting front of computers since the 70’s” I ask for a hug, it’s like some game of pain Top Trumps, “Oh, not this again!” I feel like kicking him back to the 70’s back to the great mythological Hawkwind gig and his mythological job that he once had. Breathe deeply.