OCD

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My nephew has been diagnosed with OCD, which started about a year ago and has got steadily worse.  He has to count to a certain number before taking clothes off and can sometimes put them back on to make sure he counted correctly, clothes have to be laid out just so, so dressing takes forever, he also gets stuck in rooms not able to move, its quite frightening.  His psychiarist has put him on a pill and therapy, of which he has only had one session in 3 weeks, and his mother is paying for it!

Surely this can't be right, what other treatments are out there, would hpynosis be any good, its very distressing.  He is 17.  Any help would be appreciated, we are in the UK.

 

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  • Posted

    Just a brief thought, Christine, which I realise might be unhelpful.

    Has he ever been diagnosed as being on the autistic spectrum (Asperger's etc.)? That can cause obsessive behaviour and it's disgracefully under-diagnosed, even these days. Has he actually seen a psychologist, as opposed to a psychiatrist - who's a doctor and will try to medicalise everything? I don't live in the UK, but I think there are a lot of support groups out there who could put you in touch with a specialist psychologist. His mother would probably still have to pay, though. Try googling Asperger, Autism, Autistic Spectrum Disorder.

    I could, of course, be totally wrong in thinking along these lines.

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  • Posted

    I used to work in a mental health team.  In the UK you can see a psychologist on the national health. You don't say how old he is.  The system works differently for adults and children.  You don't say what type of therapy he is receiving.  Whether he is an adult or a child it could be a form of behavioural therapy, or systematic desensitization carried out by a qualified psychologist.  OCD  often stems from extreme anxiety and the compusive behaviour is engaged  in by the sufferer as a way of reducting the anxiety.  Except we can get stuck in the behaviour and it doesn't work in reducing the anxiety and can make life extremely difficult.The psychiatrist and the psychologist can both be of enormous help in treating anxiety and combatting the compulsions.  We can all be a little obsessive sometimes,  even now I sometimes return to the house, because I can't remember if I switched off the gas cooker/grill.  The important thing to remember is that this is a treatable condition. And there is every chance it will be completely curable.
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  • Posted

    Hi there, 

    Your poor nephew! As a fellow OCD sufferer I really feel for him. sad

    Has he tried going through his dr at all? I highly recommend Cognitive Behavioural Therapy, though it is hard and requires facing your fears, but in a structured way with the help of his psychiatrist. 

    I hope you don't mind me advising the below, and I am sure you are all very supportive of him by the sounds of it, but from my experience there are some things that family can definitely do to help him. 

    Firstly, if you can allow him to be honest with you about what he is thinking and feeling, this can really help. When I get really stressed, I have to sit down with my husband and talk through my anxieties with him in a logical way. This can no doubt be quite annoying to my husband, as OCD can mean that you have to go through the same conversation again and again.

    Saying "we've been through this once already!" like some people have told me in the past (as much as it is very tempting, it won't help him)... it'll just put him off talking to people about it. 

    If you can empathise with him about his condition, this is probably going to be quite enough. (At least, it was for me). Don't expect to understand his concerns. Chances are he will know with some of his worries that there is no logic behind what he is doing, but the consequences of what he believes will happen if he doesn't do his compulsions far outweigh, in his anxious state, any logical reason he may come up with for not doing them. 

    (Something I found interesting through talking to other sufferesr is that if you get two OCD sufferers together, chances are they won't even see the logic in the others' worries and concerns, as each sufferers worries are personal to them alone). 

    I can imagine just how hard it is to see him go through this, and to watch him at the moment you must think it will take years to resolve, but this doesn't have to be the case. Sometimes it's like a domino effect and once you crack the main worry reason, the other compulsions will just fall by the way-side. 

    (Just to give you a bit of reassurance, that I have experienced this) while pregnant with my child my OCD got so bad I didn't want to leave the house, drink from a cup anyone had touched,or sit on a bus with anyone (in case they had a contagious disease). I was terrified of smelling smells that may cause a miscarriage and could spend 20 minutes trying to fill a kettle with water for a cup of tea because I was so terrified of contaminating my baby with dirty water). I also had to wash each cutlery item, plate, cup etc at least 5 times due to the same contamination worry.  My rituals easily took up 3 hours + of my day. 

    Within approx 8 mths of treatment, I was discharged, having hardly any symptoms - certainly none that affected my quality of life, which is what they judge it on. 

    I hope that this helps. If I can help in any way further, please feel free to message me again on this thread. 

    I really hope he gets the help he needs fast. And I hope that my post has been re-assuring as to how quickly his recovery can progress. 

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    • Posted

      Hi, this is very helpful thank you, I am mum and have no idea what to do for the best. He is now completely disabled by this as everything takes him so long to achieve he is now avoiding doing anything for himself. I have been doing everything but not only is it exhausting for me I can't see how it's helping him long term. I'm easing his anxiety by doing it for him but should I try setting goals? He just gets upset when I've tried so far as he says I just can't do it.eg, getting dressed or undressed. He has to take it off then put it back on hundreds of times before it feels ok to leave it off or on. 

      He he is now talking to me which is a huge help as I had 6 months where he wouldn't see a doc or admit he had a problem. Eventually he asked for help.

      he is having CBT which so far hasn't helped but only 3 sessions so far. He has seen consultant twice now as I quieried medication as he is just getting worse. He is now on double dose. 

      Is is there anything else I can try? Any advice much appreciated.

      thankyou to all who have replied on this thread too.

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    • Posted

      Hi there, 

      I bet it is exhausting for you! sad

      I would strongly suggest that he continues seeking help through his psychologist and through the use of CBT. You may well find that he starts to find things slightly easier now that they have increased his meds - I had to have mine increased a number of times to try and calm me down before I could really start tackling my OCD problems.

      Remember that tackling his OCD is going to be really uncomfortable for him and cause him more anxiety, so the more calm he can feel, and more logical in his mind using medication, the more he will be able to feel capable of doing in his therapy. 

      The fact that he has asked for help is brilliant - and the first step to him recovering, so if you haven't already, please make sure he knows how well he has done to get this far. And please make sure he knows that this does not mean that he is "mad". (I refused to seek counselling for many years (as to some degree or another I have suffered with OCD since the age of 7) thinking I'd be labelled mad & put in some sort of asylum, but that just isn't the case). He needs to understand that he has an anxiety disorder. His OCD is simply the method he uses to control his anxiety - the same as other people use other crutches, such as alcohol,drugs, self-harming etc.

      Also OCD is extremely common and he will probably be surprised to know how many people actually suffer from it.

      I am wary to give much practical advice as his therapy needs to be monitored and progressed by a professional psychiatrist. Although I know what worked for me, I'm sure there are lots of other techniques available and I am not a psychiatrist myself, so fear I may do more harm than good regurgiating everything that I was taught in my CBT lessons as this may not be the best approach with your son.

      I will also explain that when I got referred to a psychiatrist, I had previously been seeing (and paying!) a counsellor. However, when it was known that I was seeking psychiatric help, my counsellor advised that they could no longer see me, as this was seen as a conflict of interest. (The conflict being possibly giving me two different treatment suggestions at the same time - which could easily happen). This could actually result in a negative affect to the success of my treatment. It is only for this reason I am wary to go into too much detail, as if I thought it would help I would do so in a heartbeat.

      However I can say with regards to the fact of you doing most daily tasks for him, that although it is very tempting to just stop doing all these things for him, (thinking it will help his recovery); this needs to be done very carefully, with the help of his psychiatrist and at a rate that your son is comfortable with. 

      My husband ended up doing loads of things for me - again thinking he was helping the situation... Some of them were simply to help me and others (such as ensuring that things were switched off, all windows shut and locked and all doors locked before going out) were for quickness in general.

      (Referring back to my original message, this shows how OCD can spin off into different, totally unrelated things... How exactly can checking that our front door is locked 21 times before leaving the house have any effect on the safety of my unborn child? - Answers on a postcard please?!!!)

      However, I would say that alongside any treatment that he is receiving; if you can get him to talk openly and calmly with you about why he does the rituals he does, this may help him in time. For instance, if you can get him to explain calmly to you why he needs to re-dress himself so many times and what he believes will happen if he doesn't.

      I found (and still find) that the more honest I can be with people about my condition, the easier I can deal with my anxieties myself. However, don't be surprised if this will take a lot of tongue-biting on your part. It will probably not be an easy thing to listen to, or to understand. But hopefully over time, and as he seeks more help, he will be able to help lessen his anxiety through talking through these concerns with someone he trusts to help him. 

      Finally, (and I hope I am not putting words in your mouth) but please don't beat yourself up about whether you could have done anything to prevent this. (Like I believe my parents did). You are there for him and clearly support him through a most trying time in his life - you are doing so much to help him. 

      Take care. 

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    • Posted

      Wow that's alot of info and a lot of help, thank you. I didn't know that the OCD is the secondary issue and the way to deal with anxiety. I thought he had OCD and this caused anxiety along side. I've read so much but your info is so much more helpful. He has told me why he does this and it's because if he doesn't do these rituals he will die of cancer. He is petrified of it, as I'm trying to guide him through a doorway for example he will grip on to the panels so tightly he has white knuckles, I will say that's it's ok to let go now nothing bad will happen and he just tells me that I do not know that. Anything I say to reassure him gets the same answer and clearly I don't know but it's unlikely he will be struck down with cancer an die being a previously healthy 17 yr old. 

      He has a lot on so a lot of pressure too, he is completing his A levels and just has 4 months left, not that I'm counting. He can no longer write or type as gets stuck on a work so then has to delete everything an start again so never produces anything. I'm now scribing for him at home and he will get a scribe for his exams. He gets nothing done in school but takes a lot I to his head thankfully. School have been good but can't do miracles but I meet with them again this week as things are a lot worse since the previous meeting.

      he said this weekend that he was sad that he will never be the same person again. This was hard to hear and all I could do is tell him that he could well be that same person again once treatment starts to work.

      im very glad you mentioned about me doing everything for him to be ok as I was concerned I wasn't making him try and doing more harm than good but I can see my gut instinct was right, I'm known for doing do much for my children but that's who I am. But relieved you say that it is a good thing. 

      Did id you get stuck in places? He gets stuck in rooms as the doorways are a major problem, half way up stairs in another one, the car is the latest one. He also gets stuck to things, coffee tables, water bottles, door handles etc I have to talk calmly and prize his hands off, it's like he has super glue on them and just can't let go. He openly says to me now that if I let go etc I will die of cancer. He says it like he is going to explode immediatly into a cloud of dust. I can not get my head around it but clearly you understand as you suffer yourself. It's so hard to know what to do. 

      Next CBT is tonight I keep hoping something she says will help. 

      Thank you for all your inf and time, it is very helpful and I've been unable to find any other kind of info where you can ask questions or advice. I've done alot of reading but as it's not clear cut and everyone is so different I guess that's why there are no such rules.

      i have to go now as he is calling for me.

      thank you xx

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    • Posted

      Linda, just to say I hope you get the help you need for your poor son. I know both from personal and work experience how devastating it is to have to cope with a loved one's mental illness. When it's your child, it must be even worse. I'm really glad you found Angela on this forum too.

      Lily

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    • Posted

      I know I sent a lot of information - sorry about that!!! confused

      In answer to your question, yes I did used to get stuck places (or more expecially with me, on things). When I get stressed even now I can have the same problem. I get stuck on things like car door and front door handles, where I feel I need to keep trying them to make sure that they are still locked. I can also find myself unable to leave the kitchen before I have counted off all the knobs on the hob, to ensure that none of them are releasing any gas. 

      A big one for me is also reading... I will find that I cannot read a sentence in a book, without reading it in a certain pattern. Unfortunately this pattern results in me not being able to take in the meaning of the passage that I have read! This is really difficult for me as I love reading and when my OCD plays up like this, I get no enjoyment out of it whatsoever.

      I can totally understand where his cancer worry comes from - this has been a big OCD worry of mine for years.... I couldn't even bring myself to say or write the word, fearing this would "jynx" me and therefore either myself or someone I loved would get the disease.

      For instance, I would have to brush my hair a set number of times to prevent this happening. (This was because I linked hair with hair loss during chemotherapy - logical to me, but not to anyone else I have exolained it to). An argument I have found very useful myself when this OCD worry rears its' ugly head is to tell myself that if brushing my hair x amount of times prevented cancer, then the NHS would be advertising it on television constantly as it would save the NHS thousands. This argument did really help me, but as I said before, this should all be done through professional CBT therapy. For instance, this particular argument may not work for your son. CBT will help get to the root of his worries.

      I don't know whether any other OCD sufferers would say the same, but personally I find "IF the scariest word in the world. The fact that there is no certainty that something may happen, means that it COULD happen. And in my old, pessimistic, OCD mind, that meant that it would be "just my luck" that it happened to me - even though I hadn't been particularly unlucky in life up until that point. so there wasn't anything to base that feeling on! Therefore I totally understand his worry that "you don't know" whether he will catch anything - that's the problem. If you could tell him, then he would have a definite, certain answer. 

      I will say that I also suffered from what they term "magical thinking". For instance, when boiling the kettle, if I noticed the washing up liquid by the sink, my mind would think "don't put that in the water in the kettle". (Why I would do this, I didn't know!) But as soon as I had done this, it was like I had already done it and I would feel the need to have to rinse, and re-rinse the kettle to make sure that I hadn't. (Your son may not have this side of things - but I thought I would mention it in case it does ring a bell). 

      Although this isn't something you'll want him to think about at the moment, OCD may well be something that he suffers with to some degree for most of his life (this can be a very depressing thought - I know).

      Some people can recover and never get any of these things again, others (like me) will notice that they start to creep in again when they are stressed. However, as I know what the signs are now, I know to go over my old CBT notes and do some of the CBT homework I used to do before. Doing this before it becomes too engrained helps to reduce the chance of it becoming a life-debilitating illness again. 

      Also my OCD acts as an indicator as well - both to myself and people who know me very well. When I get stressed I (and my hubby) will notice that I start to get my OCD worries and compulsions back. But because I can be open with him it's fine. I'll just say that my OCD is playing up and we will sit down and talk through what is worrying me and then I will logically talk myself through why my concern is illogical. 

      Anyone reading this will probably wonder why I am airing all my experiences in such an open forum; but to be honest, where my OCD is concerned, I am pretty much an open book. If sharing my own personal OCD experiences with other people who are suffering, can help them to feel like they are not alone and not the only person in the world to feel like this, then I am happy to talk about it all as openly and honestly as I can. 

      I also felt like I would never be the same person again. And to some degree he may be right; only not the way he perceives it at the moment. Once he has got through this (which he can if he perseveres at a pace that suits him), then he will realise what a strong person he is / what a stronger person he has become. Afterall, facing your fears is one of the hardest things to do. 

       

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    • Posted

      Angie, I for one am delighted that you're airing this in an open forum. I'm sure it's going to be very useful for many people. I'm also going to find it useful in my voluntary job at the mental health centre. I'm not a therapist, of course, and don't treat patients, but it's part of the volunteers' job to simply listen to their problems. As you can imagine, quite a few of them have OCD, either as a stand-alone condition or as part of a more widespread neurosis or psychosis.

      Would you mind if I extracted some of your comments to share with my colleagues? I won't even mention your on-line name. Linda, could I extract yours too? Complete anonymity, of course.

      Angie, I had to smile when reading some of your descriptions, as they made me realise OCD, like so many other mental health problems, is something of a spectrum disorder. I wouldn't class myself as having OCD, but I can still recognise quite a lot of the things you mention in myself, albeit in a more manageable version!

      Linda's descriptions of her son's problems have brought back long-forgotten memories of my own childhood and teenage years too. I was nowhere near as bad as the lad in question, but all kinds of stuff has come back. On London buses in the 1940s, the conductor gave you a paper ticket with a number on it, and my mother always used to give it to me to hold when I was small. It's only now that I remember the terror I used to feel if there was a 7 in the number (I could read and knew my numbers from the age of 3) as that meant I'd die that day. I also remember now how I went through a period of terror that I'd need to go to the toilet all the time in my early teens, which is probably out of the same stable. It was particularly bad in the night, when I'd sometimes get up every few minutes. I can remember getting some terrible beatings from my father over that. Sounds bad, but it was all part of normal parenting back in the 1950s...

      Happily, things got better as I grew older, though I still have a few odd obsessions even now, in my 70s, which I generally keep to myself. I wonder how many other people are in the same position. I've realised over the years that quite a lot of things that we see as signs of mental illness are only in fact elements of "normal" behaviour that have somehow got out of control.

      Once again, Linda, I hope you and your boy find peace.

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    • Posted

      Hi Lily, 

      Thank you - that means a lot. biggrin

      Yes, you are more than welcome to extract anything of mine relating to my experiences, but I would ask that you don't extract any of my comments that relate to Linda's son unless she is happy for you to do so. 

      I'm also happy to answer any other questions that you or your colleagues may have. If my answers can help a sufferer - or alternatively help someone trying to support a sufferer understand a bit more about the condition (even if it's just the illogical nature of the condition), then I am open to explaining my experiences of this.

      Just please remember that I can only comment on my OCD. (I am only an expert on my OCD, no-one elses)! biggrin

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    • Posted

      Thanks for that, Angie. And don't worry - I wouldn't make any extracts from Linda's posts without permission. That's why I asked her in the same post.

      You'd be an ideal person to come and talk to our volunteers' group as part of our on-going training. Unfortunately, though, we're not in the UK and our organisation is permanently strapped for cash, so I don't think we'd run to your travel expenses!lol

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    • Posted

      Yes of course you can extract info to help others. I'm so glad my Auntie found this site as I'm bogged down with responsibility and have no idea what I am doing so this is really useful information x
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    • Posted

      I'm very glad you are happy to share your experience as it will help me and others survive through this challenging time. For the first time in his life I can not fix things for him so I'm on an emotional roller coaster ride.

      the comment re the adverts and nhs is brilliant I will try this one as of course it is so true. He tends to roll his eyes at me when I come up with such comments but this one is very matter of fact so defo worth a try.

      thank you again for sharing and never apologise for writing so much as everything is helpful right now as I feel we have hit rock bottom and have a very long road ahead of us. 

      Pi know we all have some OCD and it's funny that for the last few years he has called me OCD and I al do is like everything to be tidy and straight etc

      i hope your moments are short lived now and controllable and I can only hope he starts to improve soon.

      thank you xx

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    • Posted

      Thank you Linda - I am glad to say that my moments are short-lived now. biggrin  But my therapy has helped me to identify my traits and therefore I see them before they become much of a problem now. 

      I also am aware that in time to come, I may find that I need to see someone again, if anything changes. But that doesn't scare me now, as I have done it once, so I know I can do it again. 

      Your poor son has this very severely, but he CAN recover from this. The first few sessions I had with my psychiatrist, I didn't particularly feel like we were getting anywhere (although I knew it was all necessary, and at the end of the day, they are the professionals, with all the training in this field).

      This was because we spent a lot of time going over my past experiences, family life, family traumas, and any general traumatic experiences I had encountered in my life. 

      Although this may all seem a bit nosey, it does all play a vital role in helping to identify where these OCD habits have stemmed from... and if your son understands this, then this knowledge will both help him to make some kind of sense of the reason he feels the need to do what he does; as well as giving the professional valuable insight into his triggers and how best to help him to overcome them. 

      He will find it hard - and there will be times when he wants to give up - but he needs to stay strong, and hang in there. If he finds that he is changing too much too quickly for him, then he needs to review this (by talking to his psychiatrist) and look for a different way, or a less daunting task to master first. 

      I cannot begin to describe how much achievement I felt when I managed to stop doing my first compulsion - to anyone else it would sound ridiculous - they'd probably sit there and say "well so what - is that all you changed?!"

      For instance, I think my first OCD compulsion I tackled was stopping doing my counting ritual when I was having a shower. (I had to run water over my body in a certain way, a certain number of times before I could stop the shower and get out). This was done gradually, in a way I felt "comfortable" with (or at least as comfortable as an OCD sufferer can feel while trying to stop a ritual they have to do compulsively!)  

      To most people, this would hardly be a life-changing experience; but to me it was! I knew that now I had tackled this one, this was just the start of things changing in a positive way for me. biggrin my mental view point had changed ever so slightly as well, as I knew that I could do this. All these little changes give confidence.

      They may have a different approach to your son's treatment than my psychiatrist did with me; but you may find with CBT that they start suggesting to change small things first. If this is the case, I know it is easy to think that with the severity of his compulsions and the strain of what this is undoubtedly putting on you as well, it would be more logical to tackle a big problem first. (I know I thought this - and wanted to tackle the big problems as soon as possible, as they were the ones that were affecting my quality of life the most). However, go with what they are saying. 

      The problem is the more major and ingrained the compulsion is, the harder it will be to overcome, so it's a case of doing a little bit at a time and chipping away at things.

      It's just the same as if you decided to do a marathon. (And it will feel like this is just what he is undertaking!) If you are a couch potato one day, you wouldn't decide that the following day you were going to run 26 miles. 

      You'd probably decide to run 1 mile first, until that became more comfortable, then you may try 2. After that, you may feel confident to jump straight to 5 miles.

      But using the same analogy - you may then find that 5 miles is too much. And that's completely ok! You then would just reduce it back slightly, maybe to 4 miles; until this becomes comfortable.

      Then you may try 5 miles again and this time wonder what on earth the problem had been!! Pretty soon you're running 26 miles - but you wouldn't have believed that at the start of the process, when you were sitting on that sofa!

      I hope it doesn't sound like I'm talking in riddles, it's just the best way I can think of to explain it! (Laughable that I use this analogy, since I run around the block and get out of breath! But that's beside the point!) biggrin 

       

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    • Posted

      I get what you mean about the marathon, the thought that this is going to take so long to control is scary, it's taken over both of our lives. It's so frustrating to watch at times especially when in a rush. I've just spent almost 2 hrs getting him ready for school, the new thing for today being let's put this work in and out of my bag over and over again. Then he was pushing it down as if he was trying to push it through the floor! Then he says I will be back in an hour, they come home for study periods but I had thought I had 2 hours before is return. I know it's horrible to say but I was gutted I only have an hour as it's such hard work getting him ready I was looking forward to 2 hrs off. 

      I have now been signed off work for a month as I'm not really coping and feeling quite frustrated at times, I try not to show it but sometimes it's just so exhausting. He is much taller than me and a lot stronger so doing things like dressing him is hard work and he doesn't help at all. 

      The extra dose seems to have made him feel very tired so maybe it will have some effect in reducing his anxiety soon. It must be hard work for you sufferers as you have little or no control over these rituals. I now feel guilty when I'm drawing the curtains as I like both to be neat and even, I try not to do to now when he is around but that bugs me so to be any worse than that must feel very disabling. Is it like being trapped inside your body? Or does that not come into it as it's the brain being confused unlike someone who has had a stroke and can be of sane mind but the body isn't working as it should. Either way must be horrific.

      thank you for your time Angela it is much appreciated and a little outlet for me. I did the NHS scenario, the only thing that it helped was that we had a laugh as his reaction once he understood what it meant was basically him telling me I was stupid lol I never know whether I should turns things into humour as obviously it's far from funny but when nothing helps sometimes a little giggle can relieve some stress. Would this have made you feel humiliated or embarrassed? I never know whether I'm making things worse or not. It's a minefield.

      well I best get myself ready for his return, have a lovely day xx

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    • Posted

      I know how scary it feels to know how long the road ahead may be.... but try to look at it that he has taken the first step to recovery - that is a VERY positive thing. xxx

      Please don't feel bad for how you are feeling today... I can completely understand how you feel about losing an hour of your "you" time to relax, with how much you have to care for him every day.

      I hope this doesn't come out the wrong way (and I by no means mean this in a negative way to you, as I feel what you are doing is amazing), but in effect you have become his carer. Most carers are able to get some form of help caring for a physically disabled person; even if it's just an hour every so often to help them (I believe, but I don't know too much on that area). However as this isn't recognised as such an issue, you have no help at all. sad

      I'm also concerned about you - do you have anyone nearby who you can talk to, or can help you at all. Even if it's just to help him with his rituals for an hour or so, so that you can have a "relax" with a cup of tea or coffee. 

      It also doesn't sound at all bad that you get frustrated with him.... I know my husband used to with me, but he didn't show it..... The reason I know is because he came to a couple of my sessions with me (organised by my psychistrist and approved by me). In that session my pschiatrist asked him to speak openly and honestly about how it affected him. He said how he understood it wasn't my fault, but he did find it frustrating when he would have to do a lot of things that I should have been able to do myself. Especially when we were in a rush out the door. 

      It made me upset when I heard this, and I remember crying in the session; but this was only because it upset me how my actions were impacting on him. This also helped to spurr me on to continue my CBT.

      However I would leave this to his psychiatrist to handle.If you start telling him things like this, this may take him down a very different path that we don't want him contemplating.... he clearly doesn't like the actions he is having to take at the moment (17 year olds want to be independent don't they?!) and his anxieties are causing this. If you go on to tell him how much this frustrates and effects your day, this may well cause him more anxiety and make him start to think he's better off out of everything. (I don't say this to scare you, I truly don't - just to say that at least at the moment he has a way to help him reduce his anxiety when he can't do things). As hard as it is (and as tempting) you don't actually want to remove this at the moment, until he has learnt some techniques to help himself. 

      The tiredness could be the tablets, or depression, or even just because his body is so drained from all the anxiety, it needs to sleep. I find that my OCD and depression go hand in hand... if my OCD becomes bad, then I will start to get depressed, as a result of having too many obsessional thoughts worrying me... I got to the point as an OCD sufferer where if I didn't have a worry - I would worry that I didn't have something to worry about!!!!! Wierd isn't it - but I got so used to everything around me being scary, that if I didn't have a worry one day, I would think that I must have forgotten something that I needed to worry about!!!!!!

      As you say, the condition is disabling; though I wouldn't say it's so much being trapped inside your body, as you can move and do things that you want to do physically.... but you are completely trapped inside your head. The thought that if I didn't do something so many times, something awful would happen was absolutely terrifying... I felt like the fate of all my family was as a direct result of me touching something / checking something so many times (many of my worries were also around keeping my family safe from illness). I was taking on the responsibility of everyone's health, not just my own.  

      Humour is a funny thing isn't it. :-) I would say let him lead it. If he chuckles, or laughs at the suggestion, in a sense.. great! You know your son, so you know what his sense of humour is... My husband has cracked very little jokes before and we have chuckled about them, but then because my husband has helped me through it, I don't see his jokes the same as other peoples'.

      However, he has never joked about my rituals. Whatever the intention, this will come across as belittling the thoughts that I was / your son is having. In a sense you want to belittle them, but making them sound silly won't help him, as they are completely real to him.

      It really angers me when I see comedians joking and making light about OCD. They may find it funny, and a source of good humour.... but anyone who is dealing with this disorder goes through absolute HELL, so I don't feel it's a thing to make jokes about frankly. (Sorry - there's my vent about comedians over!) lol. 

      As you say, little giggles can help relieve the stress, so go by him and what you know his sense of humour to be.

      Another talking strategy that helped me was that I told myself that my husband didn't have to do all the rituals that I did (indeed - he did none of them), so if it was the ritual that was preventing something from happening, then it would certainly happen when he had done something for me. 

      However, by the sounds of it, your son really needs to sit down more with his therapist and go through the roots of his worries. (They will ask him a lot of "why's". Why do you feel that? Exactly what about that worries you? Why would that be a bad thing? (Until his brain comes to a point when it just shrugs its' shoulders and says "I don't know why that would happen!"

       I am here to talk anytime you need - I am glad that I am actually helping! (You can PM me as well if you want to). 

      Take care and try and get that relax in even if it's just for 10 mins. x

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    • Posted

      Hi, sorry I've not got back to you sooner but I'm not sure where the time is going and I just seem so busy. Don't worry about how I may take things as I know sometimes things can be read wrongly and I'm not as I'm just happy to have some advice and to know things will get better and that its just a waiting game. He is no better and still deteriorating every day. I don't get it as I feel he can't get much worse but he struggles with more and more each day. He gets stuck to things more and more and even in public now so it's not just associated with home any longer. I do wonder what people must think when he is stuck to a stool for example whilst walking past it and he couldn't walk away until I helped him. If I was reading this and not writing it I'm not sure I would believe it can be this bad! 

      Im lucky I have a lot of friends to talk to but I don't have anyone who can amuse my son or help with his rituals so it is all down to me and it's just us 2 at home. I've just had a bad week and I know that doesn't help either of us but I've been a bit ratty and felt irritable all week. I try to hide it and really the only time I struggle is at bed time as by then all I want to do is go and lie down and be on my own but to get to that first we have to get up the stairs which is a major issue, then into the bathroom which has always been his worst place of rituals and getting stuck. Then it's the teeth ritual and the hand ritual then he may say he needs the loo so then the hands thing is done all over again and I feel like screaming as I'm so tired that all I want to do is go to bed. This is just draining 24/7 and he needs more and more each day. I know he can't help it and I will help him there is no question of that but I do enjoy dropping him off at school and knowing I then have at least an hour to do whatever I want. Today I have 2 hours which has given me time to do this and shower and wash my hair etc in peace. I never thought in a million years I'd end up in this situation as I guess neither did your husband. The worst times of day is when you are rushing to get somewhere on time and he can not rush at all and I tr starting the procedure early but still it seems almost impossible to meet the deadline.

      do you mind me asking how many CBT sessions it took for you to feel any different at all or a point when things stopped getting worse? 

      I know what's you mean about making fun of it but I really don't do that but sometimes we do have a giggle not often but luckily he has the same sense of humour as me however warped it is but I blame my dad for that as he had a wicked sense of humour and my son is quite like him. Unfortunately he is no longer with us and he definitely would not have been able to deal with is one.

      i don't know how to pm you, But am happy to do so as I'm sure the rest of the readers think we go on a bit ha ha happy either way as its just good to get it off your chest sometimes. 

      Thank you you for all your time and information it is a real help and very useful. X

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    • Posted

      No worries about the late reply Linda - sorry for mine - I've been working for the past two days, so haven't had a chance to come online. 

      If you look at my name, there should be a little envelope underneath. I believe that if you click this you can Private message me, but I'm happy for it to be on here anyway. :-) 

      We may seem to "ramble on", but to anyone suffering, our ramblings may help them realise that they aren't the only ones to feel that way. (I hope). biggrin

      Regarding my cbt sessions - I can't quite remember, but I think it took about 6 sessions before we started to address stopping / reducing any of my rituals.

      I was advised that the amount of cbt sessions depends (at least partly) on the person concerned. They advised me that it largely depends on how much homework they are prepared to do when away from the sessions; as it is something that needs to be constantly practised in order to break the formed habits.

       

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    • Posted

      This is what I'm confused on as his CBT doesn't seem to be giving strategies she has said he needs to challenge the belief and rationalise the thoughts. So I encourage this when he is stuck and repeating things over and over but he has no idea of how he can do this as all he thinks it that if he doesn't that he will die. How on earth can I convince him that it is safe to stop/ cut down the rituals. They just keep getting longer! I've written an email to his consultant psychiatrist and am awaiting a response. Did you also have ERP sessions? I've read that this helps along side CBT? 

      He is now struggling with walking to and from his lessons and he is in and out all day as they only have 50% teaching, the rest is study at home. So when he is now walking he has to keep going back and retracing his steps. What on earth anyone who sees this must think I dontknow. I just can't imagine the need to do these things it must be hideous for all of you sufferers to cope with. 

      He has CBT tonight which I can only hope helps in some way. But next week at mo she can't even fit him in which is very scary as to go 2 weeks at this point seems ridiculous. I will try again this eve to see if she can fit him in and explain I feel anxious myself about him not having CBT for 2 weeks. Surely they shouldn't take so many people on if they don't want to increase their hours! Doesn't seem great client care to me. The consultant psychaitist is requesting a report from her to see what she thinks the progress is. That should make interesting reading. 

      Ive now got a list of websites and a list of books to research from all I need is the time to do it! Time is flying and with looking after him and scribing for him for all his school work there seems very little time left. It is so overwhelming and a huge burden but in 4 months time his exams will all be over which should make life a whole lot easier. He is doing so well to just get through his lessons and not give up totally. What an awful feeling it is he carriers around every waking moment. It is exhausting him and some evenings he goes to bed early whichis a huge relief as it means sometimes I get an hour at the end of my day to just do nothing which then helps me sleep as I have trouble when he is awake as by the time I've got him into bed I've woken up so much so I then can't sleep. Crazy as I'm so tired and do have medication to help with this! 

      Rightmust go go now time to collect my car from the garage which my son has timed so as I can collect him from school afterwards. He still has the ability to make me laugh with his cheek ha ha xx

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    • Posted

      What his psychiatrist has says really annoys me! I'm glad that you are escalating his care - he definitely needs more help. 

      It's all well and good them saying that he needs to challenge his beliefs, but he needs to be shown how to do this - and you shouldn't be expected to do this - you do not have the necessary training to deal with this sort of mental illness; and it shouldn't be left down to you. 

      My psychiatrist went through different worksheets with me, trying to pinpoint things like how anxious I get in regards to what my compulsion is and target what my actual underlying fear is. It is only then that you can start to challenge the beliefs and even then it can take guidance for things to tell yourself when you are feeling the anxiety. (Especially because when you start to challenge your fears OCD has a slippery tendency to change the thoughts you think - so you then need to find ways to talk yourself round these new thoughts).

      For instance going back to my complusion with the kettle, once I started to challenge the fear, my OCD would start popping other related fears into my head. So if for instance I told myself "my husband doesn't do this ritual and we have all been alright", my OCD brain would then kick in to say something else; which I would then have to argue against.

      He needs professional help in order to start to put these arguments in place. 

      I also found it difficult, because things that were logical to me to do and seemed "normal" (ie to medically scrub my hands after going to the toilet) weren't normal to most people, so I found. It was only through these sessions that I found out what was excessive and an OCD trait; and what was a normal thing for someone to do. 

      Depending on how he returns places he's previously been to... people may not see it as obviously as you do - OCD sufferers can be crafty. AT my worst I have found myself needing to return places before I could proceed onwards - normally because I was scared I had trod on something that could harm me like a used needle). However, I would make out that I had dropped something, so would then have to go back to "look" for it.  

      Definitely continue to escalate this as he needs professional treatment and it doesn't like he is getting the support he needs from them. Definitely tell them how this is also impacting on your life as well.

      I hope you both have a good day. 

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    • Posted

      I do feel I have been given the burden of this, normally I cope, pick up the pieces and carry on but with this I just can't make anything better or easier for him. So tonight she called me in for last 5 mins and told him he has to tell himself that doing the rituals will not effect the risk of cancer and as soon as he can argue that point against the ritual nothing will improve. But still she didn't say how, I said he doesn't know how and she just told him to say that sentence to himself. He said he does but it makes no difference,

      consultant didnt get get back to me as yet! Seems they all get paid a lot of money but are not improving his life. She did say medication won't have kicked in yet but once it does he should be able to rationalise.

      i will look for some sheets online which may help him although he is never keen once something is labelled home work as he is over loaded right now.

      i can not yet see the light but again thank you for your time.

      the on,y ritual I've solved is he has to do something with his pillows, so I fluff them up move them around so when he says, I have to do my pillows I say it's ok I've already done that. I think by the time he is in bed he is so exhausted he is ok with that. 

      Sleep well xx

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    • Posted

      Hi my son is saying today that his head feels weird and He can not concentrate. He is a bit scared so wondered if you know if this could be the medication kicking in? Thanks x
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    • Posted

      Hi Linda, it sounds probable. I had all sorts of wierd feelings when I first went on medication. It should calm down once his body gets used to it. I also find anxiety itself can cause me trouble concentrating & male me feel light headed etc.

      Tell him to try not to panic as this could make the feelings worse. X

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    • Posted

      Hi it's me again, the CBT lady today is suggesting trying family therapy as nothing is working and if that doesn't work and meds don't kick in she says he will need residential therapy. All a lot to take in! What are your thoughts? 
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    • Posted

      Hi LInda, 

      Gosh! That is a lot to take in isn't it?!!! :-( I think the family therapy idea is a great one as hopefully you will be able to get some support as a family for that as well. As for the residential care, I cannot comment from a personal perspective as I didn't have this kind of treatment, but I personally think it may be very beneficial to him, regarding how bad his OCD has gotten. This way, not only will it give you a break and some relief (as in you won't be having to do everything for him), but they will be able to treat his condition on a more regaular basis - and I would imagine with more in-depth treatment on a daily basis. 

      The key to beating OCD is to be preactising the self-talking techniques and challenging the obsessive beliefs regularly - as he is struggling to do this himself (and not receiving much professional guidance on this at present it would seem), this sounds like a good idea. 

      I presume (but may be wrong) that he would be with other OCD sufferers? That could help him too, as he wouldn't feel so alone.

      Angela. 

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