Tuesday, April 5, 2016

A JUGGLING ACT

'New Life' by my Polish concert pianist friend, Nuna Kurek.

Regularly watching episodes of the TV show, 'I Survived' on CBS Reality, during which everyday people recount how they survived some of the most horrific and terrifying situations imaginable, has really inspired me and helped me gain perspective on some of my worst ‘OCD’ fears: I’m forever seeking reassurance that no man has raped, attacked or contaminated me (I’m petrified of being alone with any man – even if it’s just in the street), in case he turns violent and I won’t remember he’s fatally violated me. 

I have to remind myself that just like some of the victims in the show, I have survived being sexually abused by my grandfather, being beaten by my parents, an attempted rape, a psychotic stalker, and am still alive and functioning. In other words, I’ve survived the worst, and now it’s a case of trying to confront the resultant trauma which has manifested itself in symptoms of OCD and PTSD.

This week, with regards to my ‘Walk down the street in trainers / shoes / boots without checking behind me for blood or contaminated needles, and don’t seek reassurance from my partner, Jan, or write down that I hadn’t been contaminated by anything on the pavement’ exposure, I managed to victoriously persevere with this (mostly in boots, varying the terrain I was covering), and to reduce my SUDS level from 15 to 1. Once I’d got to a SUDS level of 4, I’d almost forgotten that I even had this OCD, and barely felt any anxiety once I got home to ‘safety’. I still don’t feel entirely comfortable about doing this exposure wearing lightweight trainers, though, which is why I’m going to carry on repeating it until I get my SUDS level down to a definite 0.

The better I was getting at walking down the street without checking the pavement behind me, the more my brain was creating ‘replacement’ walking-related OCDs, such as having to ask Jan to reassure me / write down that the man I’d just simply passed by, hadn’t hurt me: OCD is such a cruel disorder, which latches onto anything it can to make my life a perpetual nightmare.

As a consequence of the confidence I’ve gained doing this exposure, however, I’ve almost been able to eradicate my compulsion to write down reassurances to myself that in going through my emails, I haven’t deleted and deleted again any important ones. I do ask Jan for reassurance instead, sometimes, and I can’t resist the compulsion to write reassurances down if I have too much other stuff whizzing around my brain, but I’m happy to be headed in the right direction with this OCD.

I must be mindful of having to ‘keep all the balls in the air’; to stop myself (particularly when I feel tired, ill or stressed), from relapsing and engaging in old ‘OCD’ behaviours such as checking page numbers when I’m reading, which I’ve worked so hard to curb.

Foolishly perhaps, given that I’m trying to focus on my recovery, I re-opened the fragile line of communication I have with my mother via email. As ever (for reasons too lengthy to go into here), nothing was resolved and I ended up feeling conflicted, confused and unable to articulate my feelings: It'd be more straightforward if we both plain hated each other, but despite everything that’s happened, we still think of each other every day and have loving things to say to each other.

Janet Singer of the excellent blog, ocdtalk had posted a radio discussion that was recorded on March 21st 2016 in which she joined Dr Michael Tompkins as a guest on ‘About Health’ with Rona Renner. I listened with great interest as many aspects of OCD were addressed and listeners asked questions. You can access the programme here. The main point I gleaned from it is that THE ‘OCD’ THOUGHTS AREN’T IMPORTANT, and it confirmed my suspicion that the heightened sensitivity I have to smell and sound are connected to my OCD (I can’t tolerate, for example, passengers on a train I’m sitting to next to, sniffing – which is why I wear earplugs). Again, I believe that this all harks back to a need to control my environment.

Check out Kay Ska's blog, This is what a person with mental health looks like, in which myself and this blog are featured under 'March 2016'.

Many thanks to those of you I’ve just met and faithful friends, who have taken the time to walk this tough road I’m on with me: It means an enormous amount and is giving me the strength I need to go on.

12 comments:

  1. HI Gemma, was just reading your most recent post here. I am so, so sorry to hear what all you have been through in your life. How awful, words can't even convey that on a comment here. You are right, this is an awful disease, but ERP truly is the way out of the woods. Sounds like you are making progress too, and I commend you for that. Every time truly does get easier. As the old saying goes, you have to walk through the woods to get out of them. Oh, how I wish we could just detour around the OCD, it is so so hard sometimes! Keep pressing on--we will both get out of this mess!!!

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    1. Hi Hopeful, Good to hear from you and thank you so much for your comment. Your empathy and encouragement is much appreciated. Yes - I feel as if the ERP is helping, even though it's exhausting. I hope you got the comment I left on your recent blog: I'm proud of you and the progress you're making, too, and you're right - we WILL get out of this mess one day. Take care, keep going and all the best, Gemma

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    2. Hi Gemma! Thanks for your reply. For some reason when I comment on blogs, it doesn't always send me notification that the other responded. Weird. Anyhow, I did see your comment on my blog (and did just respond to that today). Sounds like you are fighting this, albeit a tough one at times. I am so sorry. Some days are better than others, I have those too. Sometimes I feel like I am making a lot of progress and then something happens that I should be able to face, and I just can't. I was reading through some of your most recent posts, and I liked what you said about part of your ERP focusing on just trying to move past what is going on and not dwelling on things. I struggle with that too. If something comes up that I deem contaminated, I am trying to just not focus on it and keep going on. I find if I am able to resist it initially, then it really doesn't bother me much later on that I didn't "clean up" properly when I wanted to. Of course, sometimes the OCD still wins, but as long as my game is getting stronger against it, then I am good with that! Keep fighting!

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  2. Well done on the continued exposures. It's very brave of you to put it all out there. It must seem strange to someone without the disorder but suffice to say it feels like stepping naked into a cage with a wild tiger.
    The worse my OCD got the more sensitive to interruptions I have become(possibly because they mean I have to restart compulsions?) and noise in particular derails me more than anything.

    Like you there are certain situations I have to put background music on to drown out would-be saboteurs.
    I think this "need to control my environment" reveals a common aspect of OCD. You learn what you have to avoid and it can make for some unrealistic expectations, e.g. in my last job in an open office, I used to get angry if people were laughing/talking around me when I was trying to focus on something(or do compulsions obviously!). But of course, you're always going to have people laughing/talking whatever near you in an open office so you're onto a loser. I particularly detest being watched or stared at. Again, unavoidable sometimes. Tempting to say people with OCD should be granted private working environments but of course the thearpists would say this is pandering to OCD and unhealthy. But that begs the question that everyone can "get well" and I'm not sure that's the case. In the real world with real people with real OCD I think some adjustments would be compassionate at least until a person has made improvements through therapy. Cos I experienced some very special hells in the workplace, and you're trapped there with nowhere to run, and all you can do is resurrect a fried brain to try and think your way out of it; probably looking like a weird tool in the process!
    I like the bit about replacement compulsions - I experienced a bit of this. For a while I was kjidding myself(and my therapist) that I was undertaking ERP and I wasnt at all. I had deftly switched my old compulsions for new ones(what I later referred to as shortcut compulsiojns). In a way these proved effective stepping stones to doing the real thing but obviously if you get stuck with them and don't move forward, it's a problem. It's all about moving things in ther right direction I think. An analogue dance. I don't know if I can entertain getting back on the horse until I've resolved my financial situation as I find the worry precludes what's required for effective therapy. But I enjoy reading about your progres and I look forward to trying ERP again when I'm feeling less AAAARRRGGGGHHHHH!
    Cheers
    David.

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    1. Hi David, Thank you very much for your comment; it feels so good to know that you can identify with my symptoms and that you're on my side. Yes, re-reading my blog, I can see how completely bizarre my behaviour must seem to those who have never experienced OCD, but my firm belief that OCD / PTSD need to be talked about openly in order to challenge the shame and secrecy attached to having the disorder overrides my worry about humiliating myself in public. I'm so sorry you went through that 'open office' hell. I totally get it: A couple of years ago I did an internship at a magazine which was based in an open office and I, too, really struggled: The situation triggered many of my worst OCDs, and it took me an AGE to complete reading / writing tasks that most people could get done in half an hour because of my compulsion to keep checking text, and the editors would often have on music in the background which further reduced my ability to concentrate. Keeping my symptoms under wraps got harder and harder, and in the end, even though I was proud of myself for having got through it, I could sense the editors' frustration that I was so slow and had to have instructions repeated. I work for myself as a musician, however, and have done for about 7 years, which is how I'm able to have OCD and still work: At least I can take myself home if I feel too bad - but generally I try not to give in to it. I write about how OCD impacts on my work a lot in my other blog at: www.buskingmystory.com. This 'replacement compulsions' business does bother me, I have to admit - and that's where having a therapist who can be objective would be most desirable. Some days I feel like OCD is like wading through quicksand and I'll never get out, but I guess that the important thing is I'm aware of it, and somehow I must try to nip the new OCDs in the bud before they take hold. I totally get how you feel you need to get your financial situation resolved before you can proceed with your recovery: Going by my experience last year in having to deal with the fraudulent transactions on my bank account, my poor brain couldn't cope with fighting my OCD, too. Take care, keep pushing in breathable, manageable chunks, and you'll get there. Best wishes, Gemma

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  3. Hi Gemma,
    "and it took me an AGE to complete reading / writing tasks that most people could get done in half an hour because of my compulsion to keep checking text,"
    Ha ha - that's one of those magic moments when you sigh at the realisation someone else has gone through the same thing you have!
    I came to dread being expected to read things or copy numbers when anyone was around. Reading's always been a slight problem for me - never a strong reader despite many efforts to remedy it. It's almost like my short term memory is faulty and sometimes I have to keep going back and checking again until it registers. Maintaining a thread is a bloody nightmare when it's like that. As OCD got worse, it got worse and noise or distraction really derailed reading for me. I know that other people with OCD have this same thing going on and it makes me wonder if OCD is rooted in a damaged short term memory or some other facet of the brain which makes information register properly. I tried raising this on the OCD forums(fora?) but people just don't want to talk about anything like that. Either you're parroting the usual CBT/medication spiel or they get annoyed with you and close you down. But I'd like to understand what's going on in my brain better.
    Ironically a repeat offender is hammering nails into wood at the moment and it's outside and it's driving me up the wall! Seems to happen every other day here! One of God's little surprise exposures no doubt. {I had to take a break until the hammering stopped}
    I totally feel for you in the internship - the unfairness is a lot to swallow isn't it. I've had similar experiences. A mental problem that could've happened to anyone gets translated as a lack of commitment on your part, laziness, stupidity, when it's none of those things. I have surprised myself what I'm capable of when I'm left to it but in those open office work places with social difficulties, I've also surprised myself how badly I can perform and it's killed me wondering what colleagues and managers make of it. I usually end up beating myself up and putting in a load off extra hours to compensate. It's no way to live though is it.
    I really admire how you took matters into your own hand and adjusted your life to accommodate the problem - i.e. using your music to make a living. That is beautiful. More power to you. I hope that I can do this with writing but I've just had to try and get a job doing what I used to do to plug the money problem first and that's proving a nightmare, and I have to try and do some work in the meantime to refresh my skills. So there's no time for writing. Of course if I do get a job, I'll be worried how I'll cope in that kind of environment again, but I don't know what else to do. I really hope one day I can say bye bye to all that and just write for a living. I do have a load of poems that I've written over the last year or so, and I aim to publish those in a couple of books so that will be a start, but it won't solve any money problems. What a shame it all comes down to money in this world. It makes trying to address such a thing as OCD an absolute bloody horror show!
    David.

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  4. Hi David, Thank you for your comment. It's uncanny how we've both experienced very similar symptoms with our OCD, isn't it? Yes, I'm sure that some people think I'm not very intelligent because of the age it takes me to do (on the face of it), simple tasks, and also in social situations, I say the most stupid things because I get tongue-tied. I'm not stupid, though, and despite being not very sociable at all, I'm a performer: I've never really been able to work that one out! Fortunately, I've got to a point in my life where I care little about what other people think of me - apart from those closest to me, which helps. I, too believe that I have short-term memory damage caused by my OCD - and it scares me. Yesterday I was sent a link by an institute that researches the brain in relation to OCD and other mental health disorders. I haven't had a chance to check it out properly, yet, but here's the website if you're interested: http://friendsofthesemelinstitute.org/TheInstitute.html. From what you say the 'open office' environment definitely sounds as if it's not for you. I discovered it wasn't for me, either, when I did the internship, but I so understand that the annoying matter of having to make money gets in the way of us moving on. I'm, funnily enough, researching how to make money as a freelance writer ONLINE so that I can avoid an ignorant boss breathing down my neck and the pressures of having to work surrounded by other people talking etc. etc.. In order to take the time out to do that, I'm losing money - but I'm hoping that I'll be able to earn it back sometime in the future once I've found a suitable job. To save money and to help calm my frazzled brain (it works), I also grow food on my allotment: I've always been poor money-wise, and with the cost of living going up, it's only going to get harder. I was interested in what you wrote about your poetry writing: I, too, am a poet with a book of poems I want to publish! I can tell you're a great writer from the way you express yourself and describe OCD in your correspondence. I do hope you find a way to be a full-time writer... I guess it's a matter of just keeping pushing until finally something sticks... If only living with OCD wasn't a full-time job in itself! Gemma

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  5. Hey Gemma,
    Ah thanks for saying that, I don't have any kind of writing credentials though. I enjoy trying to write poetry but I'm also aware that my poetry is hit and miss. Yet it's important to me and it's really the only useful thing(unless you count an unfinished website) that I have to show for the last few years. So it would mena alot to me if I could publish it. I've been listening to some podcasts about self-publishing which are helping me learn some of the ropes and I am confident I'll publish it this way - usiong the tools like smashwords, KDP select, Kobo, and print-on-demand. HEre's a list of the shows:
    http://www.thecreativepenn.com/podcasts/
    One word of warning though - I've heard repeatedly that there's not a lot of money to be made in publishing poetry, compared to say novels. Still, something's better than nothing surely. And it's a start. My major obstacle is the book covers. I need to do them myself and I keep getting stalled. Theyr'e not going to be great as I'm no artist but I'm confident I can come up with something that will do until I have more money and can redo them properly.
    That's interesting about the short-term memory thing. It's a common thread you know. A psychologist might say it's a knock on effect but I think in my case it's a cause. You're right - the open office environment isn't for me. God knows I wanted it to be and have tried my heart out to make it so, but boy oh boy did I run into just too many problems in the process. So I have to accept it's no good for me. Yet unless a big bag of money falls into my lap unfortunately it's also probably where I'm goign to end up if I ever work again! The contradictions are chewing me up these days. Honestly I just wish I could write for the rest of my life and make money that way.
    I'll be interested if you crack this online freelance thing. A few times I've serached for writing apprenticeships or opportunitites to get started but I've never found a thing.
    I#m sorry to hear you're losing money,but nevertheless, I am full odf admiration that you have thrown your hat in the ring and are trying to use your art to make a living. I think there's something fundamentally beautiful about that and I wish I had the same courage and could just throw everything at that from now on. But I'm scared it wont work out, will take too long, and I'l be penniless. So it feels like a good precaution to try and get a smelly(!) job first.
    That institue sounds interesting. I'm so paranoid about snake poil salesmen now as having this has made me aware there are a lot out there ready to prey on our problems and fears. I already fell for the ayahuasca big sell! And that's not exactly snake oil, it has it's place; but it's also not a cure for mental illness as some would have you believe! Sheesh - 2.5 grand I'll never have back :( One born every minute as Barnum said.
    Oh I know what else I was going to say - I like that you have embraced the way you are and what you said about not being sociable despite being a performer made me think of this episode of the above podcast:
    http://www.thecreativepenn.com/2016/03/14/introvert-entrepreneur/
    I dunno - maybe it's just more pseudo-wisdom but I found the discussion of the 2 personality types interesting at least.
    Sorry Gemma - I write far too much in these comments/replies!
    David.

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  6. Bizarre as my memory is, it only just occurred to me that I had meant to say somehting about the abuse you mentioned in the article. Now I'm not really equipped to comment senisbly on it and it's probably best I say nothing at all but I didn't want to just overlook it as it's too big a deal isn't it, and it seems callous. I will say this: talking to people online about OCD and other things over the last few years, I've been absolutely horrified how common this problem is. Something seems to be fundamentally broken in people regarding this issue(the perpetrators I mean obviously). I think it's something human beings need to urgently address, understand the causes of and deal with head on because it's been going on behind closed doors for too long and hurting innocent people. I think it's good you're talking about it but it's not surprising there are OCD related ripples from all of it too. I'm so sorry - I wish I had better words to say about it but I'm a bit green about this area. And sorry I forgot to comment the first time. This happens a lot with me when I Reply to things.
    David.

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  7. Hi David, Many thanks for your comments and email: Sorry it's taken me a while to get back to you: I haven't felt very well this week and like I said before, I'm not always available online. I'm happy for you to reply here (but thanks for the email address, anyway). You ENJOY writing poetry - that's the main thing. Thanks very much for the links to the podcasts, which I shall listen to with interest. With regards to publishing your work and finding freelance writing gigs, I can't recommend the book, 'Writers' and Artists' Yearbook 2016' highly enough. It's worth buying a copy and it should answer a lot of your questions. I know there's unlikely to be much money to be made by publishing a book of my poetry. That's not my main motivator where my poems are concerned, though. I'm more interested in connecting with others at a deeper level than the everyday through them. I'd just love to have a professional-looking book to distribute. Regarding your book covers, I think 'simple but effective' is good. I found it useful checking out the local bookstore for ideas for mine. I'm so sorry you were taken for a ride by those people; they take much more than one's money, don't they? I fell prey to the cowboys (the people who ran my therapy training course) - so I'm very wary of being tricked again - hence the self-help approach. Thanks for what you said about my abuse. I know it's a difficult subject, but like you say, it needs to be brought out of the shadows and openly discussed if there's to be any hope of exposing the perpetrators and bringing them to justice. I'm struggling with all the emotional turmoil this journey to recovery is bringing up, to be honest, but will try to keep going and positive about it. All the best to you, Gemma

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  8. "I think 'simple but effective' is good"
    That's what I've been wondering. What Im aioming for at the moment is a bit more elaborate than I ought to coinsider. So I'll finish it and if it's no good, I'll go for something simple but striking. Silhouettes or a Hitchcockian opening style thing(Saul Bass?).
    Funny you should say that. I have been popping into bookshops to have a gander to see if I can get any ideas!
    Thanks a lot for the tiip ont he Freelance Writers book - I need to get this. I hope the podcast is useful. Yup there are a hell of a lot of snake oil salesmen out there ready to prey on our problems. A tragic aspect of people.
    Well I mnow my comments are probably a bit naive but it feels like something needs to be said. Cue me and my soze 10s!
    For what it's worth, I struggled with having to confront certain things during therapy - like doing my dirty washing in public. I was made(for all intents and purposes anyway!) to talk about certain things I wasnt comfortable talking about. I was made to feel like I wasnt committing to therapy if I didn t share them. However now its clear to me it made no difference whatsoever to the therapy and just made me feel extremely ikky and unconfortable about this unbidden intrusion into a private room by a stranger. So I question some of that now. I hope you can get through, over or around this latest hump in the road and persevere. Perseverance is everything with this thing, but also, it can be bloomin hard. Sometimes you just need a day or week off.
    And it's OK if you don't reply Gemma. I know the deal ;)
    Take it easy
    DAvid.

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  9. Thanks, David. You shouldn't feel forced to do something you're uncomfortable with. Yes, this is very hard. Take care, Gemma

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