Kind of disappointed in the forums here

[Marko2020]

I'm just wondering something okay so don't get mad or upset. We come on here to talk about our ocd and find similar like minded people who may have went through the same or similar experiences?

Now when we go to a psychiatrist we talk to them

About our ocd and it just feels so much better to get it off your chest. Sometimes I feel we just want to talk to people and I see a lot of posts on here go unanswered, or telling people to forget the thoughts and treat it that way. Now I know that is the way for odd suffers but in the end aren't we still parsonage and caring humans?. What ever happened to just talking to each other and be their for one another. It makes me sad knowing as time goes on we seem to get more separated. I can remember a time when we use to have our doors open for each other and we could walk in and have a chat etc, but now the doors are all locked and no one wants to take any more. Just my in take on things is all.

I have no one to talk too in real life okay so I try find a forum that I can speak to people and not get reassurance but the occasional yeah I've had that and been through that. Maybe I'm just feeling lost right now because I feel I have nothing to live for. Every day is the same and I try get out but my anxiety and people letting me

Down has got the better of me. Right now I can't stop thinking about college and now the head ****** me

Over and I didn't get my hnd I deserved. Excuses after excuses from that guy and I just feel

Emotionally wrecked. I've lost a stone in 6 days and I eat a little but not much any more. Doctor put my pills down months ago to half and I stay up to 4 or 5am as when I do sleep I get so many nightmares and weird dreams. I have no one at all in my life and just stay in bed as what's the point in life any more. My pip got rejected as they say I can work because I can walk a certain but and raise my hands above my head. They don't know the hell of ocd that is in my head. Psychology never seems to get back to my doctor. I feel so empty inside its unreal and all I can think about is killing myself. So much hatred towards that guy which scares me and doesn't go from my mind because of the thoughts I may hurt him etc. I can't get a break its unreal . Any ways I have taken up too much of your time as it is and if anyone has read this far. Thank you.

[Gemma7]

Hi I am sorry to hear that you aren't doing so well and I have read a few of your posts. From my perspective I dont always respond to people when I don't feel like I can offer them any more advice but it definitely doesn't mean that I don't feel for the person posting.

Not eating or sleeping much will definitely not help you when you are feeling low so try to eat and sleep. I sometimes get dreams that upset me or trigger ocd but have learnt to get up and distract myself from giving them any weight but it can be hard to do that.

Can you appeal the pip decision? I went through tribunals for incapacity benefit multiple times even when my ocd meant I left the house only about a handful of times a year.

Have you got interests or hobbies you enjoy because they can be a great distraction and really lift your mood?

[Marko2020]

I just feel everything I have worked towards has gone wrong. 1st year at college the college messed up and gave us an out of date paper and it got rejected so we all had to resit months after. Then my hnd finishes and I'm

Told my old Hnc is not good any more because the courses changed and I'm short of credits. The guy has taken over a year to do the transfer credits and I put a complaint in and we all had a meeting to which I was called a stalker for emailing so much and he said he would email me early next week to give me the information but he forgets a lot and I know he won't email me as he never does. Thing is this time it's in writing and witnessed etc so will he do it?. I don't trust people as it is because I have been let down a lot and the whole year he has done this to me. What state will I be in if next week comes and he doesn't hold his end of the agreement? He and the college will be on holiday until August 20th and waiting so long will mess me up I know it. Don't know what to do for the best and I seem so obsessed with this one thing.

[Caramoole]

It's always difficult to strike a right balance, or I guess, find a place that supports entirely what we hope to find and that may differ from person to person.

The ethos of the Charity is to help people towards wellness, to improving their lot, towards getting better and claiming a life back where it isn't dominated by anxiety and OCD. In that respect simply providing a place to say "Have you ever felt?", "Yeah I feel like that", "Do you have thoughts that?" (etc) is more likely to create a place of stagnation.....a place where people can sympathise with each other, reassure each other, swap details....but remain stuck. I don't feel that that is our role or our aim..

There are others who will feel just like you.....but that isn't the aim of the charity. We are what we are, we promote what we believe. It's a bit like going to a Sushi Bar and being upset because they don't serve Cheese Burgers & Fries. Perhaps there is a place for a forum that works in the way you'd prefer (although I don't know of one), perhaps those who feel strongly enough can get together and set up such a forum, it's easy enough to do and can be done without cost these days. Personally, it's something I'd absolutely hate to see as it may be supportive in the moment but utterly destructive in the long term.....but I guess people have choice.

People here on the OCD-UK Forum do care, they care deeply but in a constructive way that wants to see people improve. I make no apology for that.

[Marko2020]

See people talk about cbt and just forgetting the thoughts rtc but this could work for some and not others so why do the forums say that is what we should tell everyone?

I have had 2 lots of cbt and it never done anything for me and I try to ignore the thoughts but the sheer volume I get everyday is overwhelming and I can't do it to them all.

It's like religion I guess, you don't force religion on people because some experts say this is what we have to do and this is how we do things here.

I just feel the freedom of choice has gone from this world sadly. I've read what experts say about ocd and have w lot of the books and I can honestly say not one of them

Has helped me in any way.

[taurean]

I think when we are up we are up, and when we are down we are down. That is quite typical of sufferers.

These forums are provided free to use out of the funds raised by the charity, in recognition of the fact the internet gives great outreach to sufferers family friends and therapists/trainee therapists.

And everyone gives their own time free and I believe genuinely in the desire to aid and succour people in, often great, need.

Unless able to pay for private treatment, people may have long waits for therapy. I like to think the charity and its members and forum members can fill the gap, get people started, suggest self-help and beneficial practices such as mindfulness, yoga, distractions, debate on meds and issues with them.

Maybe you might take a fresh look at the threads where you can see people have genuinely been helped and assured.

Look for topics not responded to, threads not supported and yes of course you will find them.

But set out on an opposite path of looking for guidance, assurance, strategy, and occasional breakthroughs and you will find them in plenty here.

This is one if the most inspirational human interchanges I have ever come across. I think that view is likely supported by the many overseas members that we have.

Edited July 5, 2015 by taurean

[Caramoole]

See people talk about cbt and just forgetting the thoughts rtc but this could work for some and not others so why do the forums say that is what we should tell everyone?

There's a serious flaw straight away in that statement. No-one says forget about the thoughts....but they may try and help people to view them differently. To respond to them differently. To change the thoughts and behaviours that drive and maintain them. To not give them the importance and meaning we currently do. To examine our current response and find ways to change that response.

It's like religion I guess, you don't force religion on people because some experts say this is what we have to do and this is how we do things here.

We don't force anything on people here, people are here through choice. As I said, we are what we are and in this instance, that is the ethos of the charity. I wouldn't attend a Jewish or Catholic Church and expect them to abandon their teachings because they didn't offer what I wanted.

The Charity strongly believes in raising awareness, in certain tried and trusted methods like CBT/ERP....in changing cognitive distortions, in not merely providing reassurance because it offers short term comfort. We can't be what someone wants us to be because someone wants us to be, we are what we are and promote what we feel is beneficial. Perhaps we're not right for some, at a given point in their illness.....that's just how it is for now.

[Marko2020]

Yeah I understand that. I am just so tired of everyone saying that cbt works for everyone when it truly doesn't. I was so happy when I got mine and then disappointed with the outcome. I feel I will forever be frapped in this nightmare that is ocd and I just feel I would rather be dead than live this way for any longer. I feel numb inside and full of hate towards some people and I try and try to listen and adopt other people's tried and tested methods to just be dissapointed again and then You know what happens?, yep the thoughts about "well this might not be ocd if you have done all that and nothing has changed", constantly that is on mind and this college guy which is not nice at all.

[taurean]

I think if you look at Lostie's last post on her "coping techniques" thread, you will see it sums up one of the beliefs I personally have in this forum.

Sometimes just a little adjustment in what we are doing can make a big big difference, refocus the camera and shift someone from "stuck" to making progress.

You have read the books, tried CBT and haven't moved forward; that seems to be the proximate cause of your disappointment, which is understandable.

It isn't however about the knowledge - one can have too much knowledge, overthink things, not refocus correctly as in Lostie's case, not carry out ERP correctly so receive no benefit.

As Lostie shows, this forum has real power in sticking with people through a rocky turbulent ride; something of which I personally feel very proud.

Edited July 5, 2015 by taurean

[Marko2020]

Yeah you are right and I'm sorry if I offended anyone. I just can't get the thought of wanting to kill this guy out my head and I k ow it's a good thing if you worry about it because that makes me believe it's more ocd than anything else. Im starting to think I have in fact over educated myself because it just doesn't seem to shift. When I wake up is the worst time because it's fresh in my head for some odd reason.

[Guest Tricia]

See people talk about cbt and just forgetting the thoughts rtc but this could work for some and not others so why do the forums say that is what we should tell everyone?

I have had 2 lots of cbt and it never done anything for me and I try to ignore the thoughts but the sheer volume I get everyday is overwhelming and I can't do it to them all.

It's like religion I guess, you don't force religion on people because some experts say this is what we have to do and this is how we do things here.

I just feel the freedom of choice has gone from this world sadly. I've read what experts say about ocd and have w lot of the books and I can honestly say not one of them

Has helped me in any way.

I fully empathize and I also wish I knew why the charity promotes the one-size-fits-all approach.

[Caramoole]

I also wish I knew why the charity promotes the one-size-fits-all approach.

The Charity has it's own ethos and certainly isn't a one-size-fits-all Tricia. However, as I've said to Mark, it is what it is and should make no apologies for what it stands for, which is why Ashley (as it's founder) has established a charity based on the vision and beliefs he had.

As I also mentioned above, perhaps those who vehemently disagree with all that we stand for, could establish a forum or charity based on their own beliefs if they feel so strongly.

Most of those suffering from OCD will benefit from the advice offered, most will find significant improvement by attempting to follow those methods.....however, it's impossible to include in every reply that's made, a rider acknowledging that for a very few (for whatever reason that may be) they may not find the same success, or know of someone else who hasn't had.

I'll be perfectly frank and say that it puzzles me why people continue to use the forum on a daily basis when they are in complete disagreement with much or most of what we stand for!

[Guest Tricia]

The Charity has it's own ethos and certainly isn't a one-size-fits-all Tricia.

I'll be perfectly frank and say that it puzzles me why people continue to use the forum on a daily basis when they are in complete disagreement with much or most of what we stand for!

In answer to your last question, in my case it's because I like to think I can contribute something with almost sixty years experience of OCD.

If it isn't a one-size-fits-all approach, then please explain what is recommended by the charity other than CBT? I know medication is accepted, but even that doesn't appear to be highly recommended.

[Enjay]

Hi Marko2020. Regarding PIP did you write much in the " further information " text box that is in each section after the "Yes, No, Sometimes " tick-boxes? I found that most of the tick-box questions weren't relevant to me because they were mostly about physical instead of mental health. For example I had to tick that I can lift my arms above my head and that I can walk up steps which wouldn't have given me a high enough point score to gain PIP, but then I wrote in as much detail as possible how feeling unable to touch most things in my home makes everyday tasks very difficult and time consuming. It gave them a much clearer picture than just relying on the tick box questions and I managed to get it at the enhanced instead of standard rate. I'd definitely try appealing. I wrote my information in draft on blank paper first because I had so much to say and had to use very tiny writing to fit it all in. My OCD also robbed my university graduation from me and I have spent half the year trying to get back on ESA because I had completed a month of temporary Christmas work that I could specifically just about manage which makes my doctor think I am fuly fit for work, so I can emphasize.

[Marko2020]

Yeah I wrote a lot in the boxes but they was so small it was unbelievable. They just treated me like I was losing and had no mental illness because I could hold a conversation and look at them in the eye now and again. Would love to see them try go through ocd on a regular daily basis.

[Enjay]

Yes, facing OCD everyday is exhausting! I would still try appealing - perhaps you will end up with a better informed / more understanding person handling your paperwork.

[gingerbreadgirl]

If it isn't a one-size-fits-all approach, then please explain what is recommended by the charity other than CBT?

I think CBT is a pretty broad church, and it's possible to recommend it while tailoring it to an individual's situation and needs.

[Guest Tricia]

It's not that broad! It's pretty basic stuff - face what you fear and stop compulsions (including asking for reassurance). I worked all that out at ten years of age. What now, when that approach fails to help me and so many others?

The message I keep receiving is to go away, keep my 'negativity' to myself and suffer in silence! I would do so, and rarely moan about my situation now, but I hate to see others going through what I did a few years ago, feeling they are failures!!

Edited July 5, 2015 by Tricia

[gingerbreadgirl]

I think what you've described is ERP, a part of CBT but not the whole package.

[Guest Tricia]

Sorry, I left out the cognitive part, which is all stuff most of us also already know.

[gingerbreadgirl]

Sorry, I left out the cognitive part, which is all stuff most of us also already know.

Not sure I agree with that - before I learned about the cognitive side of CBT I was lost.

[Franklin12]

I think the key to becoming free from a life ruled by OCD IS breathtakingly simple, so I agree with you Tricia there. It's amazing how long it takes to see what is essentially simple though. The big problem though is that seeing isn't enough - doing is what makes the difference, and the doing is uncomfortable and frightening.

I don't think that this forum only advocates CBT, although as Ginger points out CBT is a broad church - based on challenging how you think about things and changing your behaviour. There are also plenty of discussions about other evidence based practices such as third wave therapies like mindfulness.

CBT may not be universally successful - I know all the rules and I still get hit for six sometimes, and I know that if I'm out of whack physically, like having a hangover, my OCD will have a hayday. But this is where I have learnt to carry on regardless - to put all those uncomfortable feelings, those awful thoughts, to one side and let them co-exist whilst I get on with my day. It's a similar type of training that is increasingly used for people with chronic pain - you may not be able to get rid of the physiological cause of the pain, but you can learn techniques to coexist with it and get on with your life rather than focusing all your attention on it.

Anyway, I've gone a bit off topic, my point is that I think that most people can get some benefit out of following what is advocated on this forum, but of course we should all be understanding of how others are feeling and try to be empathic in our responses.

[Franklin12]

Oops weird double posting

Edited July 5, 2015 by Franklin12

[Gemma7]

Not sure I agree with that - before I learned about the cognitive side of CBT I was lost.

Yeah I got much better a few years ago but not cognitively. Now I am really ill again and I totally see what I did wrong. This time I am applying cbt and now I finally get it.

[taurean]

I am well read on anxiety therapies, and have had several lots of beneficial CBT treatment from experienced professionals.

I have a book on ACT (acceptance and commitment therapy) I have studied mindfulness , The Four Steps, tried some hypnotherapy.

I am with the charity and many others on considering CBT as the gold standard of treatment for OCD (and for me other anxiety disorders).

What I have learned has been invaluable to me.

From here I was able to learn The Four Steps therapy programme, which works well in conjunction with CBT.

With help from the charity I found my new clinical psychology team - they have been brilliant and my sister is now consulting them.

If something out there fresh and beneficial comes to light I am sure the charity will look into it and provide a view. Periodically they post on here with news about research - recently for example the study on use of anti-pychotics as potentially useful in conjunction with an SSRI.

I do not see them as blinkered or pushing only one approach.