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My gorgeous dd has really really bad OCD.

233 replies

gracepaley · 12/04/2008 23:30

We are on the waiting list for therapy and reading up about it like loons, but we are feeling really bleak about it. It's such a fucking pointless, ridiculous evolutionary blip, and it's turning her into a ghost of herself. Anyone got any cheery stories about recovery to bolster me? Normally more resolute, but just tonight feeling crap about it.

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SalVolatile · 13/04/2008 19:34

Hi, not got time to read whole thread, but I had OCD from age 11 until about 35, intermittently at first but then badly. I managed to hide it for years. CBT was very successful, as was understanding the condition: until I understood what was going on I secretly thought I was in fact mad. Being able to discuss it can help, but you have to be careful to remain neutral even in the face of mystifying, exhausting or annoying rituals from her. The important thing to know is that very few sufferers will have the condition for ever and therapy is very successful. Also goes with very high intelligence and creativity, by the way . Tell her there are lots of us out here..........

gracepaley · 13/04/2008 22:00

Oh Sal I wish I had read your post earlier.
I have just really really lost it. We are on holiday in a place she has been before but she is really exhausted and it has just taken 2 hours to get her into bed, didn't even have a bath, just mad pyjama rituals, eye rolling, repeating words, crazy toothbrushing ritual. Her little sister is exhausted too.. I completely lost the plot. I recovered myself and told her I was angry with the OCD and not with her but I feel really sorry for her. I am determined to do better tomorrow. I KNOW it is not her but her illness, but it is REALLY HARD. Tomorrow is another day. I WILL do this properly.

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worrybum · 13/04/2008 22:50

gracepaley I wish I knew what to say to make this seem more bearable. I know it probably seems like extreme torture and is exhausting to witness and deal with at times but I think it is important not to let her see your frustration with her rituals. Easier said than done I know but she will be finding it extremely distressing too. You know that this is not her fault and she is not well, you have said as much yourself, just focus on that and as hard as it may be, try to enjoy your time away. Perhaps you could call your gp when you return and see if you can try and speed up/fast track the process for therapy somehow. I really hope that she gets the help that she needs soon. In the meantime please try and concentrate on the fact that with this CBT you will have your dd back to her old self. Just think ahead of in a few years to come when she will be leading a happy normal life and looking back on this phase and thinking ''my mum was really there for me'' Stay strong!

((hugs))

MegBusset · 13/04/2008 23:02

Sorry to hear about your DD. You might find this website helpful, it's a forum for OCD sufferers.

gracepaley · 13/04/2008 23:13

thank you worrybum and meg busset. Yes WB I know. It is v challenging. I think I am still slightly in denial about it all and so when the symptoms get very bad I still get a bit surprised, angry and anxious and my recovery time is not always as quick as I would like it to be. I like your idea about projecting to the future. I have just written her a letter telling her all the myriad reasons why I love her and why she is brilliant. Because she is, and it's SO UNFAIR! Her little sister is being hilarious though, offering a running commentary on the rituals, in a really matter of fact way. We have a lot to be thankful for. And a lot to learn.

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KerryMum · 13/04/2008 23:19

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KerryMum · 13/04/2008 23:19

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gracepaley · 13/04/2008 23:25

cheers KM - I last met you on the cunt thread........
AMazing how all these ocd-ers are coming out of the woodwork.
Her initial appointment is in 2.5 weeks, so we just have to support her until then. I was hoping we could stop it getting any worse before that, but it seems that we can't. SHe is too scared of it to countenance the idea of standing up to it.
So yes until she gets the therapy love love love is what she needs.

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worrybum · 13/04/2008 23:29

I think KerryMum you have made a really good point. Whilst others do not see the behaviours as normal it is important that they understand why someone with OCD behaves in the way they do. For them the rituals are wholly necessary and to prevent or try to prevent them from carrying them out will only add to their distress and anxiety. It sounds to me though as if you are doing the right thing by allowing your dd to carry on as she needs to only you are finding the whole thing upsetting. Am I correct?

KerryMum · 13/04/2008 23:30

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KerryMum · 13/04/2008 23:32

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worrybum · 13/04/2008 23:34

x posts. Yes gp we are coming out of the woodwork and all with positive tales to tell.........notice how there has not been a doom and gloom post yet? And, I don't think you're likely to get one. The odds of CBT working are very much in your dd's favour.

berolina · 13/04/2008 23:40

grace - what the hell, will stop being cowardly and post.

I became ill with OCD fairly suddenly, at 16, although in retrospect some traits were there beforehand. I had two pretty bad years, and things started to resolve themselves when I left home for university. I think in my case a really quite unhappy life situation was a big contributing factor, but please don't think your dd's OCD is your fault in any way - it can happen independent of any life situations, and really the fact you are posting and care so much about her and wanting her to be happy and do what's most helpful for her indicates to me that she's very lucky to have you as her mum.
My parents, of course, were devastated and at an utter loss; but the way they went about things - breaking into the bathroom, shouting, threatening me with getting me sectioned - was of course counter-prosductive. (In fact, the threatening with sectioning made nme scared enough to refuse therapy altogether, which was obviously not ideal). If I was interrupted in what I suppise I have to call my rituals, I had to start them all over again, as at my worst I really felt I couldn't trust my memory, my mind, to be sure I had done what was necessary. Writing years after, I described it like this: '[my] memory fell off the chronological cliff for seconds on a regular basis, leaving me condemned to repeat the action I had intended as many times as it took my drenched and hanging-on-for-dear-life memory to accept it, haul itself up and dry off [...] I invested in disinfection, placed my little capital in the power of keeping pure. I drank water diluted with vinegar; I measured childproof caps of own-brand pine disinfectant into the bathtub and held my legs in the off-champagne warm water [...] I mourn the strength I was forced (forced?) to give to the hunt for ways and means to sneak back into the now-unlockable bathroom. For this weakness, too, I despise myself: for the power of my compulsion, power it accumulated at throttlepoint, like a local thug collecting protection money. [...] Not daring, for a long time, at least, to stand in its way, to build a barricade, to stage an uprising, I gave it strength, and strength, and strength, selling my future to my present, my eyes bent to the greenish layer of Shield soap on my hands, leaving smudges of foam to indicate I had indeed been there, pushing away the thought of how easy it would be, in another universe, to turn my back on all this.'

In other words - if she experiences it like me - she will probably have some awareness of the actual unnecessariness of the rituals; but the alternative will just be too frightening - at the moment. This is where CBT can be tremendously effective - in appealing to that awareness and strengthening it. Probably techniques such as so-called autogenic training, or visualising the anxiety as a graph whose curve will fall eventually, could help her too.

FWIW: I believe that the potential for OCD is common to all humans, in that we all cling to ritual and structure to make sense of life and feel safe. In OCD that need is greater and that production of ritual and structure - at its core an essential impulse for survival - is more extreme.

Hope some of this helps.

MaryAnnSingleton · 14/04/2008 08:33

hello gracepaley,so sorry to hear that you are struggling on holiday,though it's good to have contact with mn while you're away..echo what others say about not stopping your dd's behaviour - the anxiety engendered by not being able to perform rituals is unbearable and it's best to wait until the treatment is underway, painful and frustrating though it is.
Remember it will be better before too long, hang on to that...lots of love xxxx

MaryAnnSingleton · 14/04/2008 08:37

berolina - that could be me you describe with the washing rituals...I'd be up at 5 to start them,getting through endless vile bars of Cidal soap, or indeed any soap - I used to buy bars from different shops to avoid being sussed out by chemists..the times I bunged up my parents basin with soap resdie, the times I sneaked in to the bathroom after the cleaner had gone to sluice everything with dettol in case they hadn't done it properly... it was hell and exhausting and sometimes I never wanted to wake up in the morning.
Sorry - sounds over dramatic but it's made me remember the hideousness of it all.

MaryAnnSingleton · 14/04/2008 08:39

I curse the advent of anti-bacterial soaps for the potential OCD sufferer too.//

worrybum · 14/04/2008 09:12

not forgetting the hand gel MAS!

worrybum · 14/04/2008 09:14

how are things this morning grace?

FYIAD · 14/04/2008 09:56

nothing to add to the great advice you have here, just sympathy.x

gracepaley · 15/04/2008 07:52

Hello all. The broadband in the hippy commune was down last night..........
You all write so movingly and encouragingly. Berolina I am SO so sorry you had to go through all that. I can understand your parents' reaction. It's totally wrong and totally inappropriate, and cruel, but I can understand it. I am amazed at how well you have come out of it, but those scars must be hard to shift. I really feel for you. And I feel for my dd too because before we got our heads round what the OCD was we were quite harsh with her about what we considered to be weird and annoying behaviour.
Yesterday was hard. She can't really relate to any other kids at the moment because of her speech thing (repeating words, saying things forwards and backwards) and the worst thing was that she wet herself because her stepping rituals meant she couldn't get to the loo on time. That was really tough. She's 9. Then at bedtime I just put her to bed with her clothes on and without doing her teeth because she was so exhausted and didn't want to go through all her bedtime rituals. It still took her 1.5 hours to get into bed though. I am just counting th edays till the appointment and going to call the CAMHT today to see if we can move it forward. She is really in a kind of hell.

I know we will get through this. It is just v hard.

OP posts:
MaryAnnSingleton · 15/04/2008 09:16

gracepaley...but hang on in there...thinking of you and dd

Kimi · 15/04/2008 09:24

Could not not post, some truly wonderful advice here.
I suffered very badly and sometimes still do, but it does get better I promise

PussinWellies · 15/04/2008 10:55

It is hard, really hard. Our son was deep in the throes of OCD from the age of seven till ten, when we finally made it to the top of the waiting list. We couldn't go walk down the road, eat meals, get the children to sleep, get a babysitter, cope with school, have friends round, even sit in the garden without trauma -- everything seemed to be a trigger. Looking back I simply cannot see how we coped, and it sounds like that's where you are right now.

When he got it, though, CBT worked brilliantly. It wasn't obvious at first, but over a couple of months the anxiety came right down.

The exposure-response-prevention started gently, working on the easiest problem first, and then building on that success. Sometimes it was tough going (I can remember DS screaming at the therapist, 'You just seem to WANT to frighten me', which was gutting) but it gave him his life back.

He's 12 now and had a rough patch at the start of secondary school, but a very few sessions with the same therapist have seen him back on form.

All the very best to you and your family.

Flowertop · 15/04/2008 11:19

When I was about 7 I started to touch wood so that 'nothing would happen to my loved ones' Think I overhead someone saying touch wood to make things ok. For years I had to sleep with my arm out of the bed holding on to the headboard (it was wood!). I remember being so cold in the winter. Up until a few years ago I would hoard plastic bags and thought by throwing them away something bad would happen to my loved ones. I eventually tested my belief one day (as DH was getting very concerned about 100's of bags in my cupboards) and through out the bags and have never kept one since. It is great that so many people have been helped on here with their OCD issues and am sure this must be giving you confidence for your DD's future happiness.
Good luck!
XX

MaryAnnSingleton · 16/04/2008 18:07

hi gracepaley - how is the holiday going.. ?.thinking of you

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