How do I break out of this cycle?

[October]

Tomorrow I am going to see my GP to ask for appropriate support to get me through my situation, which is one of having cptsd, now at least 8 years duration and counting.

My last t left some weeks ago, promising to refer me to group counselling.  I told her that would probably not be appropriate, but she said it was all that she could find available, and that she would make the referral.  As far as I am aware she did not do it because I have heard nothing whatever.

So, I now need to go back to the GP and ask what is going on.  The problem is I have done this so many times, and been on so many merry go rounds of being referred to somewhere almost but not quite right for me, and I am afraid of perpetuating what is not a positive experience for me.

So, I have formulated a plan.  I plan to ask for a proper assessment, to be carried out at a specialist ptsd clinic, which would then allow the specialists to make an informed judgement of what is the best course of action to take.  What do you think of this?  I have never had such an assessment.  I have had one non specialist after another giving me their own versions of a diagnosis, but they vary with every single person I see, and to be honest it is not reassuring to know that they understand less about my mental health than I do, and in some ways that is true.  In some ways they know more, but often they know less.

I also get treatment depending on what is available (and cheapest!!), rather than tailored to my condition.  So, for example, the UK guidelines on the treatment of ptsd call for trauma based CBT.  I got CBT, for a while, until the t moved away, but it was not trauma based.  So it kind of skirted around the edges, without ever getting to grips with what is wrong.

In 2000 I had a proper diagnosis made (Not NHS), but only looking for symptoms of acute ptsd.  It found them, albeit in a slightly non standard form, but they were there.  In a follow up meeting I was told that I qualified also for cptsd, but because I have no letter saying this, it is largely ignored.

I don't want to go along tomorrow and play the victim, and ask the doctor to rescue me.  I want to find an appropriate way out of this situation, so that I can regain my life.  Or am I just flogging a dead horse?  The only thing I have left to lose is hope of recovery, but that is a difficult one to let go of.

Any comments gratefully received.

[amethyst]

(((October)))
 I don't think you are beating a dead horse. You are being pro-active, you have made a plan, and you are asking for appropirate help, all of which is healthy behavior. You go girl!

[Bloopsy]

Hi October,
I second that -- you go girl.
Love.B

[miss piggy]

Hello October,

You don't sound like a victim--just frustrated.  Can you get copies of your medical files where cptsd is documented along with everything else?  I don't see why not...it's your right to know.  Then you can highlight the pertinent parts and shove it under everyone's nose.  Sorry I sound cranky--I have a similar documentation nightmare in my own family and also confront varying degrees of professional competency.  This is why patients need to advocate for themselves.  Squeaky wheel and all that.

I agree with the others.  You rock!     MP

[Sallying Forth]

((((((((October)))))))))


Do whatever it takes to get the help you need. Your plan sounds good. You are taking care of yourself.

[Sela]

((((((((((October))))))))))

I want to find an appropriate way out of this situation, so that I can regain my life.

This is my favorite sentence I've seen you write ever!  Keep this attitude, no matter what happens (not that you haven't had this attitude, just that you've put it so wonderfully into to words and I may have missed it before but I didn't miss it this time).

As a matter of fact, state this to your doctor.  Your plan sounds good to me too.  Go for it!

  Sela

[onlyrenting]

SF,
I might suggest going straight to the insurrance company specialist. There should be a group that deals with individuals not receiving the help they require. The doctors are low men, Go over their heads, find who you can speak with when their plan is not working for you.
 
It's all about keeping money in someones pocket. I had to find what group gives approvals, what doctors the insurrance co. will pay. There are more doctors than your GP knows, he doesn't know. The decision is made at another level. Find out a name a contact for approvals, who does the GP get their approvals from. Go to that source and tell them what you are going through. They can tell you another group that has just what you need. The docs may be from another area further away  but let that be your choice, not theirs.

Im so sorry and I feel your pain.

[onlyrenting]

Error ment above post for October,   OR

[CeeMee]

Tomorrow I am going to see my GP to ask for appropriate support to get me through my situation, which is one of having cptsd, now at least 8 years duration and counting.

My last t left some weeks ago, promising to refer me to group counselling. I told her that would probably not be appropriate, but she said it was all that she could find available, and that she would make the referral. As far as I am aware she did not do it because I have heard nothing whatever.

So, I now need to go back to the GP and ask what is going on. The problem is I have done this so many times, and been on so many merry go rounds of being referred to somewhere almost but not quite right for me, and I am afraid of perpetuating what is not a positive experience for me.

So, I have formulated a plan. I plan to ask for a proper assessment, to be carried out at a specialist ptsd clinic, which would then allow the specialists to make an informed judgement of what is the best course of action to take. What do you think of this? I have never had such an assessment. I have had one non specialist after another giving me their own versions of a diagnosis, but they vary with every single person I see, and to be honest it is not reassuring to know that they understand less about my mental health than I do, and in some ways that is true. In some ways they know more, but often they know less.

I also get treatment depending on what is available (and cheapest!!), rather than tailored to my condition. So, for example, the UK guidelines on the treatment of ptsd call for trauma based CBT. I got CBT, for a while, until the t moved away, but it was not trauma based. So it kind of skirted around the edges, without ever getting to grips with what is wrong.

In 2000 I had a proper diagnosis made (Not NHS), but only looking for symptoms of acute ptsd. It found them, albeit in a slightly non standard form, but they were there. In a follow up meeting I was told that I qualified also for cptsd, but because I have no letter saying this, it is largely ignored.

I don't want to go along tomorrow and play the victim, and ask the doctor to rescue me. I want to find an appropriate way out of this situation, so that I can regain my life. Or am I just flogging a dead horse? The only thing I have left to lose is hope of recovery, but that is a difficult one to let go of.

Any comments gratefully received.

Well the good news from your post is that you have a plan and it has even been suggested by one of your previous doctors.  But the best news is you are not just going to throw in the towel and give up hope.  The only thing I would suggest is that you put EVERYTHING in writing.  I have found that the old saying, "the squeaky wheel gets oiled," is very true.  When you put it in writing, it not only serves as notice, but the dual purpose of documentation (evidence).  Lay it all out for them.  The less they have to think or research, the better.  I call it "spoonfeeding" them.  As has been suggested by others, learn how the system works and write to those in a position to do something.  I'd start with the GP and move up the ladder. 

I wish you luck October.  Let us know what comes of it.  Be persistent, you have every right!  Besides, C has the right to  the healthiest mom possible and no bureaucracy should be allowed to get in the way of that.

CeeMee

[October]

Thank you all so much.  I don't know what I would do without you - I really  mean that.

A bit heartbroken today, to be honest.

I went to the GP, to say that I have heard nothing about this referral.  He said that is because Diane did not do it.  She wrote instead to my psychiatrist, recommending the referral, but asking him to do it.  And he also has not done it.  He showed me the second page of her letter on his screen.  (From which I conclude that he was hiding the first page.  Interesting.  I am supposed to be copied in on all these letters.   I am going to write to Diane's secretary and ask for a copy.)

So now I have to go back to see my psychiatrist, and ask him what is going on.  Fortunately, I already have an appointment to see him, in October.  He is the person who the last 2 times I have seen him has told me not to bother going back unless I want to, because he wants to discharge me.  The ast time he said this, in April, Diane said she would write to him saying that he couldn't, but he went ahead anyway. When I rang for an appointment in August I found I had been discharged, but I pretty well demanded that this be reversed, and it was.

The GP said he cannot refer me anywhere else for an assessment, because that will just give me the impression that I am being referred from pillar to post, and that nobody really wants to get to grips with sorting out what is wrong and putting it right.  I said that is absolutely right.  He also said that Diane says I do not have ptsd.  I said she means I do not have acute ptsd, but I do have complex ptsd.  He said that is not what she says, but that I need to see the specialist; he (the GP) can do nothing for me.

Afterwards I was sitting waiting for my daughter while she was seeing her therapist, and there was this sweet little boy came into the waiting room, just playing with some toys and waiting for his mother to come from a private chat with his therapist, I assume.  I won't give any details, but I got really nasty visions in my head, which I did not act on, of course, but the anger is there, with nowhere to go.  It feels insane at times.  This is really scarey.

I am left feeling totally betrayed by these LIARS.  People who cannot simply say 'I will do x' and then <shock horror> actually do it.

Kyrie eleison.

[Awen]

(((((((October)))))))

What an awful cycle to be in!  I know nothing of how it works in the UK health system.  Is it possible for you you get into a PTSD specialist for an eval w/o a referral????   I am being evaluated at a university clinic that is a specialist in PTSD research.  I made the appointment myself after discovering via internet research that my symptoms/situation match those listed for PTSD, and someone on another board suggested I find such a clinic.

We ALL want to be normal again. 

[October]

(((((((October)))))))

What an awful cycle to be in!  I know nothing of how it works in the UK health system.  Is it possible for you you get into a PTSD specialist for an eval w/o a referral????   I am being evaluated at a university clinic that is a specialist in PTSD research.  I made the appointment myself after discovering via internet research that my symptoms/situation match those listed for PTSD, and someone on another board suggested I find such a clinic.

We ALL want to be normal again. 

That is how I achieved it the last time.  I went to the Medical Research Council and took part in a study into whether people with ptsd can control their emotions or not.  The researcher found I could, and I found a letter from him saying I have ptsd.

That was in 2000, after my GP refused to listen, and told me to settle for living in the foothills, and to stop aiming for the top of the mountain.   

And now, here I am again, with a new round of doctors wanting to challenge the diagnosis, without replacing it with anything else.  I am become Alice through the Looking Glass again.

Thank you for the suggestion, however.  It reminds me that lateral thinking is possible.  Will investigate options tomorrow, I think.   

[Brigid]

October,
I'm sorry for this nasty spiral you are swirling in right now.

That is how I achieved it the last time.

I want to be clear--is "it" a referral to a specialist?  If so, were they able to help you at that time?  Is there a paper trail of referrals and diagnoses that can be accessed?  Is there any possibility of going back to those same doctors, or is that a geographical problem?  Sorry if I'm asking things which should be clear and obvious. 

I am very glad to see you fighting for yourself with such tenacity.  The squeaky wheel gets the grease, as they say, and you should just keep squeaking until they lubricate you properly.

Hugs,

Brigid 

[mum]

Hi, October, I wish I could help, but I do send you love and support.

It seems to me that you are taking what control you can in this situation. You don't want to be a victim anymore, that is clear.
May I suggest (take it or leave it) that you start some work on simply visualizing what your life could be like without the ptsd, without needing help from doctors, without your past.  I don't mean to discount it at all, I have simply found that giving myself a thought "vacation" (from my story) has actually started to change my life....

I started small....gave myself permission to simply imagine what it would feel like if I had the life I wanted.  It was hard at first, because although I knew what I didn't want, I didn't spend much time imagining what I DID want from my life.  I also do not suffer from a debilitating condition, so once again, take what makes sense of what I say and leave the rest.

Anyway, I figure there are no "thought police", so I decided to spend my thought energy (when I wasn't working on the real crap of my life!) on happy, totally free and almost "ridiculous" (by my standards then) thoughts that made me feel totally joyful inside.
My traditional therapist told me the brain (oh, some particular part....sorry) doesn't really know if the emotions you are feeling are "real" or in present time or not. That is why I can get myself all upset over and over if I choose to think about a horrible situation I have....my brain and body react as if it's happening RIGHT NOW, but of course it isn't really. It's just worry about the future or regret about the past... none of it is happening right at that moment ALL the time.

This was hard to wrap my brain around because I would say, well, my ex is still taking me to court, attacking me on a regular basis, etc etc...BUT, my life and my life situation are two seperate things, and I don't want to BE my story/situation. My situation may be difficult, but most moments of my day are NOT about that...and when I start obsessing about it (worry/regret again) I go nowhere but down the deep dark spiral of my own making.  So I choose my thoughts more carefully now.  I guess it's all about being mindful of where my mind is and whether I am in control of my emotions (choice again) or are my emotions in control of me.
Sounds easy...I know, but is is and it isn't. It does get easier with practice. I had a habit of worrying and getting upset in reaction to outside things....so I just started a new habit of acknowledging what my pain is about, letting that go, and filling myself up with what I WANT for my life/my emotions.  It really has been about taking back my power over my own life, something you are also doing.
I am not suggesting you are not suffering from ptsd or any other ailment, not at all. I am just saying, give yourself a break from being just that story for say five minutes a day....just because you can, and because you are a good person who DESERVES a break.  Imagine something different, just because you are worthy of that.
Anyway, I just thought you could use a thought vacation....you have been working so hard to help yourself, and you are soooo smart and wonderful.
I will send you some of these thoughts and positive energy anyway....maybe you will catch them over the ocean!
Bless you October. Doctors are people with all the same messes we all have.  Unfortunately, they do a job we all count on soooo much, and that's why it hurts us when they drop the ball.

[October]

Hi, October, I wish I could help, but I do send you love and support.

Anyway, I just thought you could use a thought vacation....you have been working so hard to help yourself, and you are soooo smart and wonderful.

Thanks, mum, your suggestions make very good sense, and I will try to work on that one for a while.  It can't do any harm to try something new, and I could do with some hope to hang onto, to be honest.

The problem with having ptsd is that the anxiety washes over you before you can control it, and it trails your thoughts along with it.  You end up having trains of thought that once started cannot be controlled without either another trauma, or something of equivalent weight, coming along to take over.  It is like having an old fashioned type record stuck in one track over and over again.

That is why when I start to think about any episode from the past I can get really sucked in, until it is happening over again, just as vividly, and just as frightening as before.  The only way to prevent this that I have is avoidance.  Avoid the episode, and avoid anything reminding me of the episode.  Then avoid anything reminding me of the reminders.  Then ...

The end result is staying at home as much as possible, because that allows me to remain calm and relatively stable.  And trying not to get triggered there as well, because then the only escape is sleep.  Which I also do a lot of the time.  Mostly because I am exhausted holding all this emotional stuff at bay. 

Anyone who in the face of this kind of behaviour thinks I do not have (complex!) ptsd must be mad.