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I can't see a way out of the mess I'm in

(43 posts) (17 voices)

Started 1 year ago by Truddles
Latest reply from Nimrod
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Truddles
Member

Sorry I know that you've heard this before but....Help I'm having a bad week and it's just going from bad to worse. I'm not listened to and I'm just passed from one doctor to the next without any help. I'm being treated appallingly and if I say anything I'm told to be patient. Just how ****** patient do you have to be? I've been in this mess for over a year and got absolutely nowhere and it's not for the want of me trying

I was doing so well and now I'm back to square one and all because of the insensitivities of the medical profession. I can't carry on like this, I don't have a life. It all revolves around doing the copious amounts of laundry that my OCD creates and the lengthy bedtime rituals. I've just spent three hours and a whole bottle of hand wash trying to get the laundry out of the machine I'm getting into more and more of a muddle and now can see no end to this misery.

I am trying really hard with the CBT but I have my limitations as I found to my cost the other day when I tried to work through the anxiety only to find that I was in fact having a hypo. Had I continued as instructed working through the anxiety I'd have ended up unconscious

I'm cold, tired and in considerable pain and I just want it all to stop.

If the professionals aren't going to help what am I supposed to do?

Sorry to go on but.......

Trudy

Sun Feb 21 2010 16:38:02 #
Liza22
Member

Hi Truddles

I don't really have any advice to give but I just wanted to say I know how you feel. I'm struggling with my CBT at the moment too and finding it hard to break through the OCD barrier.

*Hugs*

take care

Liza x

Sun Feb 21 2010 19:32:31 #
Truddles
Member

Hi Liza,
Many thanks for those kind words and the hug. I feel that I have got to the point where through lack of sleep and all the physical problems I can't take much more. How are you supposed to work through the anxiety if you can't tell if it's anxiety, epilepsy or a hypo? If I ignore the last two I'm in trouble

Sorry to hear that you're struggling with CBT at the moment. I could manage the CBT if it weren't for the epilepsy and hypos confusing the issue

Trudy x

Sun Feb 21 2010 19:53:07 #
Wombat140
Member

I'm so sorry to hear the doctors are messing you around again. Honestly, how long can that lot go on without actually doing what they're paid to do? Have they got your epilepsy medication sorted out yet?

At least you're making progress with the CBT - you can go out now without looking back all the time. That's a big step forwards. So you do have some chance of things improving, even without any help from the doctors!

Has Jude (the advocate) made any progress lately?

Big hug from
Wombat140

Sun Feb 21 2010 19:56:48 #
mama
Member

Trudy,
I dont know you well, and I can see, you have quite the struggle. I do wonder, however, about your going back to square 1 being all the fault of the insensitive doctors. They certainly arent helping...thats true! However, I am of the belief that OCD is the enemy here. Doctors and loved ones not understanding or even treating us abusively really is not about us at all. Its easy to say that when I am not the one being effected at the moment. When it happens to me, it hurts like hell... I would offer though, that other people have their own issues to battle. If they treat you unfairly or with disrespect...they have some issues to work out of their own...Maybe they are lonely themselves, maybe their moms and dads do not validate them...any number of things make people lash out and be mean. One thing I know for certain though...if they are aiming to hurt you...its not YOU thats the problem.
The biggest problem is the OCD and depression devils telling you you 'can't'. The truth is you CAN! We always have a choice...one just brings more anxiety than the other because OCD makes it so. I CAN stop washing my hands...but I wont because of the intense anxiety that it brings... When I'm ready to face that torment, I will...I will conquer the real demon...OCD. I used to think it was my husband giving me OCD when he was mean to me over it...truth is he'd get frustrated and yell at me...etc. But another person in the same situation wouldnt get more compulsions from having an angry husband. His behavior was not okay...but they were a result of his own issues. I learned to say 'thats your problem...its not about me'..and then focus on what was REALLY making me upset...I cannot control OCD. It puts me 'out of control' over and over.
I hate that little devil and its stupid biological anxiety triggers...but once you can tune out OCD's attempts to have you blame someone else....you will get him for sure. Half the battle is recognizing that its really OCD making you feel this way...when your aim is solely on him...you are sure not to miss when you let the arrows fly.
Andrea

Sun Feb 21 2010 22:28:01 #
Unregistered

I'm so sorry to hear about this. I wish I could help more but all I can say is that I'm here, we all are, and we care about you, so stay strong and keep posting so we all know you're ok.

Sun Feb 21 2010 22:57:43 #
Unregistered

Hey truddles. I'm thinking about you always. I know its frustrating and debilitating, but hang in there. I would give my right arm to have your resolve and carry on, after what you've been through. Andrea, as usual makes some fantastic points. I guess you should for the moment focus on CBT that you can do and reward yourself for having a good day with the CBT your successful with.

The diabetes and the epilepsy certainly doesn't help and I really feel for you, as does everybody else in this forum. If it helps, I will ask around for you and see if there is anything I can find out that may help you get around these annoying doctors.

Giles

Sun Feb 21 2010 23:07:25 #
Truddles
Member

Thanks everyone,

The abuse with regards to being told it's only OCD I can just about cope with, it's the fact that after a year waiting to see the ******* doctor I'm still not getting any help with either the epilepsy, depression or the lack of sleep. (I've been managing on 2-3 hours sleep a night for over 16 months and it's taking a serious toll on my health).

It's difficult to cope when you don't always understand what's going on because of the partial seizures it undermines your confidence. And I neither need nor have to put up with them messing me about. I don't appreciate being treated like an idiot just because I've got epilepsy and add the OCD into the equation and it's a licence for them to do nothing. So much for the Patients Charter and the maximum waiting time for a first appointment. What they obviously don't tell us is that they meant Jupiter weeks and not earth weeks when calculating waiting times

Sun Feb 21 2010 23:28:04 #
mama
Member

Have they given you meds for epilepsy? I have heard that some drugs used for epilepsy actually help with OCD...Let me look into it...I'll get back to you.
Andrea

Mon Feb 22 2010 4:02:44 #
DEAD!
Blocked

Sorry you're having a hard time

Hope things get better for you

Mon Feb 22 2010 11:03:52 #
Cuthbert ffoliott
Moderator

Hiya Trudy -

I'm so sorry that I can't be of any practical help to you right now. It's immensely frustrating. I really, really hope that you'll improve ASAP... even if you can shorten the amount of time spent on your OCD with, say, 25%, that would help immensely I am convinced - every minute won is a small victory, and many small victories add up to a great victory.

PM me if you feel like it, Truddles!

Hang on in there, ciao, Cuthbert.

Mon Feb 22 2010 11:28:25 #
mama
Member

In the UK, can you suggest what you'd like to try to your physician? I've gotten a list of some of the drugs used for epilepsy that also help with OCD...perhaps you can PM me if you are interested in discussing it.
Andrea

Mon Feb 22 2010 16:04:11 #
freddy
Member

Hi Trudy,

If there is anything I can do to help, just ask

Regards,
Freddy

Mon Feb 22 2010 17:43:28 #
Truddles
Member

Thanks everyone for your support it's much appreciated
I really do feel like jacking it in as I'm getting nowhere fast But I suppose I'll just have to keep going round in ever decreasing circles until I can get someone to do something

Up to my eyes with work at the moment as I'm so slow because not well and so I'll try and catch up with everyone tomorrow. If I don't try and get to bed soon I'll end up asleep at the computer and fall off the chair like I did a couple of days ago

Thanks

Trudy

Mon Feb 22 2010 23:06:10 #
Truddles
Member

Well it's clear that there is no way out of the mess that I'm in. The doctors all continue to pass the buck and I still have no treatment for any of the conditions.

I can't have the epilepsy or the other physical conditions sorted until my OCD has got to the point where I can manage an admission, but my CBT has been stopped. And none of the consultants are talking to me as they're all waiting for each other to do something. I'm completely stuck.

The OCD and the physical conditions continue to deteriorate and I can't get anyone to help me.

I've really made an effort and refuse to carry on this way but I feel I've reached the end of the line - I'm sorry but I'm too old, depressed and tired to go on.

I'm sorry but the situation I now find myself in is intolerable and I can no longer cope and don't want to go on.

Tue Mar 23 2010 16:32:22 #
mama
Member

Trudy,
there are doctors on the OCD support list on yahoo and there are resources there in England for people who can help you and advocate for you. I'm sure you have looked in to these things, but I suggest you look into something like that again. We are never too old to be worth something just like we are never too young to understand or we're never too old to learn something new. You have much too offer...its just another cycle of depression for you...what goes down will come up also...its a two way roller coaster...just hang on through the down and you'll find yourself climbing again soon.
Andrea

Tue Mar 23 2010 17:49:52 #
swan
Member

Hi,
Having more than one thing to deal with is really hard. Do you have a pyschiatrist in your area who also specialises with epilepsy. They used to in my area but dont any longer.
Thinking of you

Tue Mar 23 2010 18:09:35 #
Truddles
Member

Thanks for your support, it's not easy when no one will do anything and both the OCD and the physical problems continue to get worse. There are several consultants involved and not one of them has done anything to help, by inaccurate notes all they are doing is making an already bad situation worse

Tue Mar 23 2010 21:54:24 #
Blueskies
Member

Trudy, I really do feel you've been treated unfairly. I wrote in a post, I think ,' going into hospital some suggestions there. supporting people services from your local council and writng to your MP. It's very unfair to be left on your own to deal with all these health issues. Please have a look at your councils website if you can, and also the social services directory has lots of services that you could access as well to find a voice to represent you.

I always find it in the past a big struggle to fight for our rights, and no one who hasn't been through it will never know how that battle to get help whilst struggling with illness or mental health issues can make our issues get worse.

I hope SOMEONE will listen to your needs!!!

Wed Mar 24 2010 9:37:39 #
Truddles
Member

I've tried all you suggested and no one will help. None of the consultants will speak to me, I've tried ringing, emails and letters, the CMHT are making the situation worse, social services don't want to know because I'm with the CMHT, if you speak to PALS they just get told a pack of lies. I can't get an advocate and I've tried everywhere.

I can't get help from anyone so perhaps I will be better off dead. Then and only then perhaps they'll all listen.

Wed Mar 24 2010 10:05:21 #
Truddles
Member

I've had enough and can't cope and as no one is willing to help it leaves me no alternative. Thanks for listening to me though.

Wed Mar 24 2010 11:48:33 #
mama
Member

Trudy,
Killing yourself is not only not a solution, it is not fair to the people who care about you. Do you think it would cause no ripple effect in emotions for those that struggle with death and their own purpose in life? I think you need to stop and make a checklist of all your positives even WITH ocd and epilepsy etc. I had to come to a place in my own mind where I realized that just because I struggle with OCD does not mean I am 'less than' or a 'burden' on my loved ones...even if they insisted on telling me otherwise...its simply not true...we have an inner beacon of strength that some people cant handle, but despite OCD, you let that light in you shine Trudy...you are powerful, and your inner beauty strengthens others...let it shine my dear...your weaknesses and infirmities are just a part of what you deal with...they do not define who you are..

Wed Mar 24 2010 11:59:07 #
aishah
Member

Hi Trudy,

I am so sorry that you are suffering like this at the moment. It must be so hard having so many problems at the same time and no-one helping you. I am really disappointed with your health care professinals, especially the Mental Health Team and CADATS.

Have you got in touch with Jude, the OCD Action advocate, she must be able to
help surely. When your voice is not being heard by so many people, then a second voice is needed and I'm sure the OCD Action advocate will be able to help. especially as the situation has now become so urgent.

Let me know how you get on.

Bridget
xx

Wed Mar 24 2010 14:39:15 #
Truddles
Member

Hi Andrea,

All my life I've put others first and always considered them, now it's time to put me first. I have no quality of life and if I can't access the treatment that I need then I have to do what is best for me. And without treatment then there is no point carrying on. I'm sorry if it offends you but I've worked hard to keep going and it's making me ill and I'm too tired to either carry on or care any more.

Hi Bridget,

Thanks. What makes it all the harder is knowing that all the conditions that I have can at least be managed even if they can't be cured. But in order to do that the doctors need to actually intervene and do something instead of leaving me to deteriorate. They're not doing anything. What happens if I fall down the stairs again and instead of just bruising my shoulder I break an arm, a leg or worse break my neck? I've sustained so many injuries and still no one helps.

Yes, I've tried contacting Jude and she wrote a letter for me to take to the consultants and a letter of authority so that they can speak to her. That hasn't worked, one of the consultants refused to take it and when I rang asking OCD Action what to do next I was told she wasn't taking on new cases. So then why give me the letter of authority if there was no intention of using it to establish why I'm being treated so badly?

I was even told that I was more than capable of advocating for myself. That's as maybe but if they're all ignoring me I could be the world's best advocate and it still wouldn't work.

I'm nobody's child as no one wants to help me.

Trudy x

Wed Mar 24 2010 15:27:43 #
bingo
Member

Hey Trudy, hang in there as basically it can only get better.

Some of what you say has got me baffled. If I have understood you right (and I have read all of this thread) you are saying that nobody will do anything to help you for any of the conditions you have. I find that difficult to take as it doesn't sound like my experiences of the health services in the UK (I believe I am correct in thinking you are in the UK) as I also have multiple health problems and have found that at least one medic somewhere will do something, including geeing the others up, even if only to get you off their books - in the best possible way.

You say that some consultants are making inaccurate notes and that other organisations are telling a pack of lies. I don’t buy that. Mistakes, maybe as they do occur, but you can ask to have the notes corrected or if the medic won’t agree to a correction (because he thinks his notes are right) then you can ask to have your own version appended to the notes. As for CMHT/PALS lying, why would they do that? The notes are verifiable and would have audit trails so it would be a bit risky to lie.

You also say that Jude from OCD Action has given you a letter for the consultant. OK, so if the consultant refused to take it there is nothing Jude can do about that. However, he would risk getting into trouble if he refused to accept a letter addressed to him (or an open letter) from another professional. But you go on to say "So then why give me the letter of authority if there was no intention of using it to establish why I'm being treated so badly?" Surely Jude did not give you a letter if she had no intention for it to be used? You also say you have sustained many injuries and still no one helps. Are you saying that they are also refusing to treat physical injuries? Again, what you say about OCD Action not taking on new cases doesn't make sense as you are not a new case because as you have already said they have already done something for you by writing a letter. And that does not sound like the way OCD Action responds to people as I have always found them very sympathetic even if they can't do anything.

OK, so by now you are fuming at me and I can understand that as I found myself in what I thought to be a similar situation years ago. It seemed like a vicious circle, something had to be done about problem B before problem A could be fixed, but problem B couldn’t be fixed until problem A had been fixed!

I was at the centre of all this just sitting there in a fix and wondering not what to do for myself, but who was going to do what for me. The trouble was that everywhere I looked there was an insurmountable problem that had to be overcome before the next, also insurmountable problem could be tackled. Something had to change and that something was me, or to be more correct the way I looked at things especially my expectations. When things are bad they just seemed to get worse and worse with that small black hole getting smaller and tighter by the hour, so something had to go. In what I thought at the time to be desperation I just gave up or dropped, due to the sheer exhaustion of it, some of my expectations and firmly entrenched beliefs about my plight and just let things take their course. So a bit at a time I just accepted what the doc said and tried what he asked me to do. Eventually problem A was reduced enough to enable them to tackle problem B and things slowly, very slowly got a little better and gradually the other things could be looked at. I am not cured but to a large extent things are manageable and I have some semblance of a life although there is a long way to go.

I don’t know if this will work for you so why not give it a try? But it’s not a two minute fix, or maybe even a fix at all, so don’t give up. I know you say you are too tired to care or to carry on but you owe it to yourself to have a go.

And we are all here for you.

Take care,
Bingo

Wed Mar 24 2010 17:05:17 #
Truddles
Member

I’m sorry but I didn’t ask for a critique of my post. Everything that I have written is true and whether people believe it or not is up to them, but please don’t infer that what I’ve written isn’t true. It’s not my fault that I’m being passed from pillar to post with no treatment other than a part course of CBT.

Wed Mar 24 2010 20:52:10 #
Truddles
Member

Because of the mess that I find myself in I'm really depressed and so haven't been posting as much as I usually do. So I apologise for not keeping in touch with people but I'm finding life really difficult at the moment. It's not easy trying to string a sentence together when my thoughts are so intrusive. They just wont stop and with no help but plenty of aggravation from the Health Professionals the thoughts, obsessions and compulsions are spiralling out of control.

Wed Mar 24 2010 21:41:29 #
Unregistered

I'm sorry things are so bad for you, Trudy. I wish I could do more to help you.

Wed Mar 24 2010 22:52:19 #
Joel
Key Master

Hi all, I just want to say something about where we are with the advocacy project as I can see that this has come up in the posts here -

In everything that we do we need to ask ourselves how can we help the most people in the best way possible within our limited resources. This means that sometimes we need to restrict and ration out the help that we give. At present we have many more people coming to our advocacy service than we can cope with and so we are limiting the help we give whilst we train up more advocacy volunteers which will eventually enable us to take on more cases. This will be a couple of weeks and I think that this is fair and the right way forward.

It is also worth saying that one of the reasons that the service is so widely used is that we are being successful in lots of cases, helping people keep their jobs, stay in housing and fight discrimination. We are making real and substantial changes in people's life. We think that the advocacy service is a significant step forward and, rest assured, that we are working very hard to raise income to hire more advocates. I want us to be able to help everyone - and we will get there - but it will take time.

joel

Thu Mar 25 2010 8:23:48 #
Unregistered

Trudy I have read this thread with dismay. I have often looked at your messages and am aware of how much you contribute when others are in need and distressed.

I am sorry that OCD Action is unable to help you further. Have you considered contacting the other British charity, OCD UK? I believe their administrator works tirelessly in this area.

Bingo, You may never have encountered consultants who deliberately mislead, or even lie, but that doesn’t mean Trudy is making this up. Unfortunately, it does happen. The fact that a leading psychiatrist would plagiarize another doctor’s work makes me lose faith in their integrity! I would imagine your comments must have felt like another kick in the teeth for someone who is obviously at breaking point. Please consider that words can hurt and hurt very deeply.

Thu Mar 25 2010 13:27:07 #

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