What’s Your Story?
December 2, 2011
Well the dust has settled after OCD Week, and here at the OCD Action office we are all gearing up for the year ahead. Having poured over hundreds of evaluation forms, I think it is fair to say that the week was a success and looking at the extra media coverage we were able to get ( thanks to all our media talkers and media volunteer ) it seems like we made some progress in telling the world about OCD. It was especially heartening to see our awareness champions putting on their own events, I think that sometimes this is the most effective way to spread the OCD message; face to face in the community. It is something that we hope to do much more of for OCD Week 2011.
So what have we got planned for 2010-11? The main theme for the financial year ahead will be “growth”. We need to expand our services to reach more people, we need to get our message out to more people, we need to increase our network of volunteers and increase our influence as a charity.
All this is going to need funding , and although we are now recruiting a full time fundraising manager, we are going to need our volunteers, friends and members more than ever. – given how many people so generously gave their time and support during OCD Week – I am confident that we can do it.
Joel
This is going to sound a bit strange, as I am not telling this to a Doctor; I am putting it in a blog. I have this cough, no let me rephrase that, I have the most annoying cough I have ever heard. It raises its ugly head when I am anxious or stressed or when I think about coughing, or when someone else coughs which then makes me think about coughing, which then makes me cough. When I was younger I’m sure it used to be seasonal, three months on, three months off. I think it might be related to my OCD because when I have a bad thought I sometimes cough or I cough more than once because I’m counting in my head and because it comes when I get anxious. So that makes me think is this cough fake? But if I don’t cough it feels like my throat will close up and I will stop breathing and inevitably die.
I am struggling right now to leave “inevitably die” in this blog because my biggest fear is death and even the thought of writing that is making me feel sick, but maybe if I tell you how I am feeling about writing that I might feel better.
You might think that this is a trivial topic and that it is only a cough. But this cough is affecting my everyday life. It has made me hoarse, I swear that my voice is now a lower tone after the coughing fits I have had in the last 6 weeks. I have to take cough sweets with no actual medicine in them, you know the aniseed tasting ones, the other day I think I must have had about twenty in one hour. My tongue went numb, can you imagine what may have happened if they were cough sweets with medicine in them? Probably the same thing. At work it’s at its worst, people think I have swine flu or some sort of infection. Then I have to explain or try not to get worked up that I might have swine flu… you know germs, disease… bad…scary…anxious…ritual….ahhhh.
The reason I am writing this is partly if anyone could shed some light on this or tell me if they think it is OCD or something. Please no scare mongering though.
Other than the wonderful cough, I have had a great Christmas and New year. Lots of family and friends seen, lots of fun had, lots of presents opened and lots of alcohol drunk. On one tipsy evening… my Auntie Heather and I got talking about my cough and my OCD. I’m pretty sure we tried that technique of if you do something you shouldn’t you get a slap. So when I coughed I got a slap, not to hard of course. After ten minutes we all realised this made it no better. So my cough lived to see another day… grrr. Seven years ago was when this cough appeared and I am still none the wiser.
I think my OCD hasn’t been so bad over Christmas, I have been quite relaxed or so occupied that I haven’t had too much time to think. Puppies, my auntie has 2 new puppies, they are little Black Labradors, and I think everyone who has OCD should get 2 puppies, and here is why… if you are not playing with them, they are causing havoc somewhere else… chewing, fighting, trying to play with the cat or destroying something. Therefore you have to watch them most of the time which is very exhausting and distracting. But then you have to forgive them all that because they are so cute especially when they are asleep. I think I will call this therapy CPDT (Cute Puppies Distraction Technique). I think I am on to something…
Hope you had a great Christmas and Happy New Year.
Georgie 21
Whilst volunteering the other day, I heard a fellow OCD-er say that if they didn’t have OCD anymore, they would miss it/feel lost. As soon as I heard this, I wanted to blurt out “Yeah, like a hole in the head!” But it got me thinking … and I kind of understood what they meant.
After living with something for so long, which takes up so much time and effort, for it to then just disappear would leave a gap. BUT… then I started thinking about the terrible thoughts I and others have, and washing your hands for hours on end, and the suffering that it causes and how debilitating OCD is, and I can honestly say… I would find something else to occupy my time. It also raises a question that I find very important. Is OCD more than just a mental illness: does it become a part of you? My personal answer to this question is no: OCD is just something I have, but it does stop me from being the kind of person who wants to take risks. This is, I suppose, a restraint on my personality but it does not mean that OCD had made me who I am today. For example, people with OCD typically like order and tidiness. Well, if you could see my bedroom most days you would not think I have OCD. But if someone moves something, I will know. I would be quite happy for my OCD to pack its bags and leave… but *sigh* it doesn’t work like that.
Right, so on to the question: how does my OCD affect me now?
THE BAD THOUGHTS… they are like nightmares, but they don’t care if I’m awake. They are horrible and intrusive. They are my worst thoughts and they seem to love making me anxious and miserable. They also make me feel like I am actually mad sometimes.
THE RITUALS… they are annoying and pointless. I will give you a few examples.
I can touch my head – I have a thing about touching my head – and then comes the bad thought. So I go and wash my hands…maybe the logic there is that I am washing the bad thought away.
Before I leave the house, I want to look in the mirror or – better yet – have my housemate tell me that there is nothing on my back. Even though I know there isn’t. Although the one time I didn’t get them to look, there was something on my back… you can imagine how I felt…
Having a bad thought as I walk over a crack in the pavement or over the threshold of a door and having to go back and walk back and forth over it… I should have a sign that I can put up in the middle of the street “GIRL HAVING AN OCD MOMENT. NOTHING TO SEE HERE”
I won’t go into all of them … I have quite a few, a lot of them to do with checking.
I think that I am coping with my OCD fairly well at the moment. It’s manageable. The bad thoughts affect me the most and I feel that they are what I need to work on. Something that has helped is being a volunteer at OCD Action. I have heard about how other people’s OCD affects them, and knowing that I am not the only one who has this bad thought or that ritual, has made me realise that what I think and do is just normal for someone with OCD, and I am not as crazy as I thought I was.
Georgie, 21
Well it has been a very busy month, the new site seems to be popular and work is going well on OCD Week. I do get the feeling that we may have bitten off more than we can chew but we need to be ambitious and always looking at how we can help more people and make a bigger impact in their lives.
The last 3 days, I have been involved in our helpline training. It always amazes me that there are people out there who are prepared to give so much of their time to helping others . It is always a pleasure meeting new volunteers and bringing them into the ever expending OCD Action family, seeing new faces in the office and doing what we can to make the most of their new ideas and passions. The exciting news is that with this new group of helpline volunteers we are closer to the ultimate aim of extending helpline hours and offering a truly “out of hours” service.
Joel
A blog on my OCD… hmm where do I start…? I will try and refrain from repeating myself, checking what I have written many times or worrying too much.
I first got OCD when I was 11 or 12 (I say “got”: that’s when I got taken to the Psychologist)… I’m sure you can imagine that conversation between me and my mum… the short version went something like this, in a worried tone… “If you don’t stop this behaviour, we will have to go and see a psychologist”… obviously I couldn’t stop and I was told that I was going… to which I replied, “I AM NOT GOING TO A PSYCHOLOGIST, I AM NOT MAD, I AM NOT GOING, YOU CAN’T MAKE ME.” You can imagine the stamping of the feet, the screaming, and the tears all because I didn’t understand.
I used to count. I had numbers I liked and numbers I didn’t like. I had my reasons. I had bad thoughts, horrible thoughts. I had rituals, annoying random and stupid they were, but I had to do them, because they made the bad thought ok again. I had regular sessions with my psychologist; I would be bouncing off the walls after the sessions. It got worse before it got better. My mum and my psychologist decided to take me out of my private school at the end of Year 8 and put me into a normal high school. (I am so happy they did but was I then??? Nooo!!) I was told that if I didn’t start trying to work better with the CBT at home, the next step was drugs. Was I having drugs…? I would have rather had my mobile phone taken away and no TV or internet for a year!
My worst rituals were:
*Stepping back and forth over thresholds and lines in the pavement
* Turning the lights and appliances on and off…
* Locking and unlocking doors
* Checking things
* Having to go up and down my bunk bed stairs
* Pointing my futuristic watch at a certain angle so that when it was on my bedside table, if a laser was to come out of it, it wouldn’t touch any of my family. This is by far one of the funniest rituals I had.
*Filling my cup up….. Over and over again
*Making sure the TV was on a certain volume number.
*Leaving the mirror… I had to smile or have a good thought before I moved away from my reflection… Imagine trying to get out of the house quickly with this one.
So my good numbers were mainly even…4, 12,22,24,44,52,54,104,112 and a few in between, so I would do some of these rituals a lot of times …
My worst rituals now are:
*Asking my housemates to check if there is anything on my back or my face etc… even though I have already checked.
*Swapping items for another item that is exactly the same… I am a nightmare to go shopping with.
* Thresholds are on a comeback… not for long though, if I have my way.
*Locking the door
There are others but these are the prominent ones.
I still count occasionally, I still have some numbers I don’t like, I still have my reasons, I still have bad thoughts, absolutely horrible thoughts as bad if not worse. I still do rituals but not as many. They still make the bad thoughts better but so does CBT. I don’t see a Psychologist anymore. I absolutely loved my second school compared to my first and the friends I made are amazing. I never have had medication for my number thing and it did get better, but does get worse.
I think OCD is always going to be an ongoing battle for anyone who suffers with it… the most important thing to me is that people can understand it. My family and friends are patient, and have helped me so much. My mum and my sister especially. My sister was 9 when I was first told I had OCD. She, I suppose, saw it how I saw it. She understood as much as a 9 year old could without having it, and used to do so much for me… something she thinks I have forgotten… I remember her turning the lights off for me and getting me drinks, dragging me across thresh holds, pushing me out of the mirror and checking things for me for months if not years, until the whole cruel to be kind mentality came into it… that was a shock to the system, I tell you… We all knew full well that in order for me to get better I had to struggle through it. So instead of helping, the all familiar sayings such as “Just do it”, “pack it in”, “stop being annoying” and “you can do it” were said, sometimes shouted at me from my little big sister. She still does help me and still does say these sayings. My mum saw it from a parent’s point of view, I know she was worried. But we were soon taking it in our stride. I’d do my number thing and ask her to help and she would, and then that stopped and it was “no, you can do it…”, if I had a pound for every time I’ve heard that…seriously. She still does help and still does encourage me. (Although sometimes I would just rather have it done for me.) She also listens to me, laughs and cries with me. In our downstairs toilet we use to have a pull light and I use to turn it on and off, on and off etc… and all of a sudden I would hear “GEORGIE STOP IT NOW!”… A year or so later, before my mum had chance to shout, I would shout to myself “GEORGIE STOP IT!” I heard that talking to yourself is the first sign of madness, I disagree… it’s the cure. What I am trying to say is that regardless of how tough it is for you right now, talk to your friends and family and laugh and cry about it together. I can only hope that you have friends and family like mine, and if you don’t, have a chat with someone at OCD Action…
I am going to be writing a few blogs about how my OCD affects me, over the next month for OCD Action. Hopefully it will be a good read.
Georgie, 21
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