Hi
So i received the report following the assessment i had with the community mh team.
Within the report it referred to my mood and past treatment from m. however it didn't mention the psychological symptoms i had described, getting triggered or that i i have a diagnosis of complex trauma. I am awaiting to speak to the nurse assessor re the content and omissions of information.
Also and which shocked me was the pointing to the possibility that i could have dysthmia (which ive researched and seems to be a diagnosis of depression but given another name ? I could be wrong and missing something here.
Also possible bi polar type 2 which I'm not discounting completely but im wondering as I've read others on our forum describe how after being in ef there can be an experience of having a high which may just be the sheer relief of being out of ef ... ?
I've just been in EF for several days came out and then did experience a high and not needing as much sleep (6 hrs a nite) lots of energy and feeling really good and positive . Im now on a more middle to slight low ...
Any experience on these matters much appreciated
Ugh. It seems like they either weren't listening to you, or are discounting the things you've said as irrelevant. Sounds to me like they are trying to get your symptoms to fit in their neat little mold. :pissed:
I hate to say it but I agree with TR that they may be trying to fit you into what they know. This is not to discount potentially being bipolar but really they need to look at all you have told them versus pieces to make an accurate diagnosis and develop an effective treatment plan.
I'm glad to hear you have a meeting with the nurse assessor to discuss the omission of what you believe to be be relevant info. There are some downloads about CPTSD for health practitioners in "Resources" (http://www.outofthestorm.website/downloads/) you might want to take if you didn't already. For example, Blue Knot Foundation Fact Sheet for Health Professionals Working with Complex Trauma." (https://www.blueknot.org.au/Portals/2/Fact%20Sheets%20Info/Fact%20Sheet_Health%20Practitioners.pdf)
They were written by a medical doctor who founded Blue Knot for adult survivors of childhood abuse in Australia so may be more credible for the assessor than your own lived experience.
When do you go again?
Thanks both, yes that my background feeling on it ...mood disorders are well known to professional s and so its easily the frame of reference ..
I got the sense that the nurse specialist didn't really get what cptsd is and i guess why would she if she isn't fully trained in the content of its complexity.
Its interesting as when i did really believe i was bi polar 2 years ago (had not long been clean and sober the psych said it wasn't diagnosed in the UK.
I really do not want this to become a ' me and them' scenario and am taking the view that this is a good chance to open up conversations and partnership work. Its easy to get into fear but no one has the key to lock me up and i feel empowered enough with the support here and the good experience i had with the trauma charity to advocate . I'm also really conscious of having an advocate with me at any big meetings (although unfortunately one couldn't be with me for this assessment.
Thank u kizzie for the blue knot profs sheet reminder i read that before and thought it was v good something i will use .
Im awaiting a phone call from the nurse assessor and also have my first meeting with the nurse who is overseeing my care on the 3rd Jan.
I am v grateful (i think ) that the team have taken me in ...its v hard to get this unless psychotic or just out of hospital.
I hear you about a you versus them scenario, a gentle approach may be the ticket. :yes:
Will the trauma group be able to send an advocate with you to this next meeting? :yes:
Thanks kizzie
It is a mental health charity that provide advocates i wouldn't ask for one to meet the nurse just for any assessments etc.
The trauma charity gave me 10 months of free therapy ..was v good and im grateful but a short term spot in the grand scheme of things ....i feel reluctant to engage in anything else short term but i keep hearing people having good results from emdr
Quote... this is a good chance to open up conversations and partnership work...
:cheer: :thumbup:
I wouldn't rely on the disthymia or bipolar diagnoses too much.
I had a disthymia diagnosis that was revised to become major depressive disorder.....
Our symptoms are compared to the manuals to see if they fit various diagnoses, it seems to be more art than science and the better the psych the better the diagnosis.
Our history is vital to the process, that needs to be recorded properly and evaluated correctly.
I've had psych evaluations that differed greatly so don't rely on them to be accurate.
Its an exercise in trying to fit a complex situation into categories, not easy to do properly and I'm not really sure how helpful that exercise is anyway.
The most helpful part of my last evaluation was the statement that I had symptoms that didn't fit the diagnoses given, I had ticked all the boxes for my diagnoses but had plenty of ticks left over with no obvious boxes to use them against.
Told me everything I needed to know about the evaluation process, if I had a physical disease the Dr wouldn't leave symptoms lying around 'spare', they would have meaning.
A psych evaluation is the opposite of a medical evaluation, instead of finding out why the symptoms are present and what underlying illness is causative of the symptoms the psych starts with possible diagnoses and tries to make them fit us.
For physical illness that is the equivalent of noticing a high temperature and diagnosing it according to how high the thermometer reading is, so a fever of 104 is treated as an illness separate from a fever of 102 or 103 and not as a symptom of an illness.
I have to say despite the anxiety I felt after my latest EMDR it did what it was supposed to and that was to gain back the objectivity & a sense of control/power around people with NPD I had lost. It was only about 7 sessions and specifically focused on that issue so I believe the anxiety I felt afterward was residual trauma stirred up by the sessions. I know several people here have said they are getting good results with EMDR but have some anxiety too. It likely is 'normal' for EMDR or any approach for that matter given we have an accumulation of trauma.
EMDR was developed specifically to help with trauma (i.e., it is focused on engaging more of the brain to shift us out of the trauma loops we're stuck in), so ten months worth of EMDR may be much more impactful than other types of therapy.
Rooting for you :hug:
Thank you kizzie it is so helpful to hear others experiences and how that has helped give you back some control /power that was lost..
The consultant last year said emdr is not evidenced as effective for cptsd but I keep hearing of others experinence which tells me otherwise which I'm grateful for..
If I'm to be offered some shorter term work better it's effective hey
Richard Grannon on Youtube speaks highly of EMDR. He believes that some find it not effective because some people are going into skeptical and not really putting the work in. You are very motivated and doing a lot of hard work already so I think you'd get a lot out of it.
Thank u lily for your recommendation and kind words
Lily, I was somewhat skeptical but it did work for me thankfully. :thumbup: What I am still reserved about though is some EMDR practitioners who don't know about CPTSD think its the same as PTSD and can tap into too many layers too quickly. CPTSD is not like PTSD where there is one event or shorter term trauma of some kind to remember, it's an accumulation so treatment has to be tempered or titrated and learning safety and grounding are really important.
This is not meant to discourage you at all Boats, just suggesting you might want to talk about this with whomever you work with if you do go ahead with EMDR. I do think with most approaches anxiety will be stirred up so it's important to learn how to manage it and work out a plan with the T. :hug:
Thank you kizzie ..
It is something i have thought about and wouldn't enter into.unless the t had background with cptsd
Best wishes and peaceful new year to all
:hug:
Hi Rose.
For me, EMDR rid me of the terrible physical pain, but put nothing in its place, other than more anxiety and self-loathing. I think it was the final catalyst in the breakdown of my marriage. My NHS therapist may have believed she was trauma informed, but the effect on me was too huge for me to cope with.
All the best to you and I look forward to hearing how you move on with this new level of support.
Hi Libby thank u for sharing ...its helpful to hear both sides ...
Tredding with extra caution seems wise for me
Hi all
(Please note this post is written with kindness for the medical system and does not wish to come across with any resentful or them and us stance ).
So i spoke with the nurse assessor yesterday who had written the report post the assessment with the community mental health team (UK). I thanked her for the assessment and said i found it thorough and good but wanted to raise a couple of issues. She acknowledged this and i went on to ask why cptsd had not been mentioned in the report as i had spoken clearly that the consultant in the team had given me this diagnosis last year after i had worked with a specialist trauma psychologist. Also that i had spoken about all the symptoms that happen when i go into ef and had used the worksheets on this site to help me framework my symptoms and written about what happens to me whilst in an episode. Also i questioned that she had put in the formulation that i could possibly have cyclothymia or bi polar 2 and asked how she had come to that conclusion.
Bless her (must be a nightmare having an ex psyc nurse as a patient :)
She seemed genuinely surprised that i had been diagnosed with cptsd last year and it seemed clear he had not heard this when i said it... She also said her thoughts around it being a mood disorder where just thoughts and that now she knew about cptsd she would look back over the notes which would get her out of it and she would rewrite the report.
I went onto explain that depression and anxiety were very much part of the cptsd make up and that many people that i have known have these diagnosis but not complex trauma in its own right. I went onto talk about icd 11..
Its been so helpful for me being part of our wonderful forum here learning just how many people get wrong diagnosis and thus miss the chance to push for the most effective treatment . or indeed are pushing to get cptsd recognised by the medical model.
I would like to stress i in no way want or would find it helpful for this post to become a 'them and us' discussion. I really do not want my recovery journey from now to become a 'fight'. From previous learning and experience i don't think this is helpful or gets me anywhere better in terms of getting my needs met.
I know what its like the other side of the table and how pressurised it is. . this women who assessed me is responsible for huge case loads and probably doesn't even have time to go to 'trauma informed training ' let alone read my history throughly enough she is doing the best she can with what she's got.
I def am determined to come from working in partnership with professionals.. to bring what I've learnt to the table but to remember i am a patient and to remain open minded ...who knows i may have bi polar 2 or cylothymia but im interested in what the consultant and psychologist assess when i meet them, how those symptoms fit into cptsd framework, what i experience that doesn't seem to fit into cpstd diagnosis and conclusions drawn from proper assessment. At this point I'm.very relieved that no mention of bpd has occured that would freak me right out .
As my sponsor said this morning concentrate on what you need ,what u are wanting out of being in secondary services and not so much the diagnosis ...and i see this as a good suggestion .
What i want /need
1) support with ef episodes and all that happens when it devastates my world .
2 support with my daily life in general ..
3 acknowledgment of psychological injury by qualified professional s.
4 potential treatment that would aid the injuries and aid my recovery
Plan of action
Meet with care co ordinator next wk for getting to know me sessions and start looking at recovery goals
Meet with consultant for consultation
Meet with psychologist
Get in touch with recovery college
Hi all
Today i met with my assigned care co ordinator (mh nurse). I had a lot of anger in me before i went this morning about what ivr lost in terms of potential material success (which isnt even true because im not living the future yet) and had made pre judgements about her b4 we met. I am happy to report that the meeting went really well and i feel she is the right person for me to be working with.such a relief .
She seemed to 'get trauma' and helped me express and deal.with my emotions today , validated me as an ex nurse and offered empathy for my journey. Said she could attend any appointments with me inc welfare and disability assessments and advocate, write letters etc. is making referrals to the psychologist and psychiatrist. My she even is going to help me get a bus pass...
It feels good to get taken care of in this way its been 25yrs to get to this point
:cheer: So happy for you!
Quotenow she knew about cptsd she would look back over the notes .... would rewrite the report
It really is all about education and advocating for ourselves until CPTSD is known about more widely versus making it into a fight (although I think there will be times some of us do have to do so in order to get what we need). :applause: :thumbup: :cheer:
QuoteIt feels good to get taken care of in this way its been 25yrs to get to this point
So glad you hung in there Boats and are finally getting what you need. Yay you!!!! :hug:
Thank you both
My nurse talked about the brain being affected with trauma that was refreshing to hear ....sounds simple but things said like that help me to feel safe ..
Indeed kizzie its one thing I'm.so.proud of myself that i stand up and be my own advocate ...
Feels really good to have this nurse by my side to help advocate too ...she seems a smart, down to earth and personable women
Hi, just wanted to say, I'm so pleased that hints are moving in the right direction for you, it sounds like you really are getting the correct help. Being from the uk like you it's always interesting to hear how mental health services are helping but it sounds like you are going to get what you need, and I know that it's not easy in the uk with funding and staffing problems. I'm really interested to hear a]how you get on, so really hope you keep posting.
Thank you eyes so blue ...yes it can be quite a thing getting what we need ..a journey ..
Yep def will keep posting
Hi all
I've been having a tough time over the last week after being triggered when the council tax aren't taking responsibility for putting in place the reduction due to me not working . i feel stupid that this has sent me into EF and i can't seem to get out of it ...now im working to not let ic get its way and take me down further ...
I saw the nurse last week and she helped to bring my anxiety down and focus on the things that help. She also is going to contact the council as it just feels too much. I called her today too as i just feel all over the place and am going into perfectionism attacks . this happens when i feel out of control as a way to try and gain a sense of control but it never works. I've been meditating, grounding and did some yoga and do have some greater calm . also she reminded me to just keep the day v simple ...
I hate being like this feel so defective but know its important i love myself within it
Just read this after I responded to another post of yours and asked what you thought had brought on the EF. FWIW I don't think it's stupid at all that the situation triggered an EF, things it's par for the course when we're trying to recover from CPTSD and feel overwhelmed by life's demands.
Pete Walker has some ideas/thoughts about perfectionism that might be helpful - http://pete-walker.com/shrinkingInnerCritic.htm. It really resonates with me and I hope it does for you as well.
:hug:
I agree with Kizzie there, it's not stupid at all that the situation has brought on an EF. Feeling overwhelmed would have been one of the things most or all of us felt during the traumatic experiences, or maybe some of us didn't feel it, but it would have been there.
:applause: :applause: for using the tools you know like yoga and grounding. That makes you competent, far from defective!
:yeahthat: What BB wrote!
Thank you kizzie and blueberry for your support and kindness means a lot to me .
Pete w words are like gold in these times.
Hi all on a better keel this week and can manage 'my normal low to average anxiety '. Saw the nurse and that went well she is very supportive and offers practice help as well as psychological.
I am also going to a mental health support group on a monday with a friend and it is very good . nice facilitator (peer led) and people are sharing their inner experiences and also finding solutions amongst us ....feels.safe .
I have pip assessment on tuesday so did some prep with nurse and going to do a but more today . pip is personal independance payment for health and disability. It is a notoriously difficult benefit to get (but needed if one is to financially survive) and is based on how long functioning one is in daily living . the application and assessment process is mostly geared to physical health but i have support from an agency of how to move within the process having mh and also the nurse will actually be at the assessment which is amazingly helpful .
I am absolutely committed to pushing to get this benefit and highly aware that i may need to appeal ( about 70‰ of cases do. . .
Just hoping i don't get triggered again by the process of it ....
I believe in recovery and i believe in taking time out of working .....
Cptsd is a full time support job hey
Crossing my fingers you are able to get the PIP Boats, :yes:
Thank you Kizzie...
OK so pip assessment this morning and i was really pleased i did much research about the process and got the support b4 hand it seemed to pay off. I was able to fill the bits in that were missed and also when she wanted to get right into cptsd symptoms i was able to give her the trauma worksheet and cptsd symptom sheets id filled out from our forum rather than re trigger myself .... I felt these tools gave such a good picture of my symptoms and history than i could have verbalised ... Thank you so much ...
Also when it came to memory i refused to do the simplistic test they set (I've had it b4 ) it does not assess the problems i have in my daily functioning as i can remember 3 words ! She said i had a right to refuse and all i had told her was enough for the assessment .
So the report and points system will arrive within 6 wks and I'll take it from there.
On a positive today i received news that the local council have issued me a disabled bus pass this not only saves me significant money but also is the first official recognition that cptsd is a disability - a triumph - i feel lifted up :)
QuoteOn a positive today i received news that the local council have issued me a disabled bus pass this not only saves me significant money but also is the first official recognition that cptsd is a disability - a triumph - i feel lifted up :)
:applause: awesome!
:cheer: and :applause: and :thumbup:
Yay to you Boats, progress!