Sufferer I Feel As Is I'm Made Of Glass.

[Mystery]

Today the penny has dropped for me to realize this is an incurable disorder and that I'm in the category for poor prognosis. I always thought I was strong and that my ptsd was my ego states. I've realized over the last few months, at 45, that my nervous system has a life of it's own, independent of my resilience, my intelligence or previous coping mechanisms. I'm here to learn, grow and repair. So glad I've found this site.

 

[scout86]

Welcome! There's lots of "learning, growing, and repairing" possible. Life is an adventure! :)

 

[greenleaf]

Welcome, @Mystery! Our nervous systems sure do need as much help as possible.

I'm curious -- where did you hear about a "category for poor prognosis", and to what does that refer?

I think just about everything can be improved... I also think that some types of ptsd weren't well understood at all until just a few years ago (I'm thinking of dissociative subtypes at the moment). It's hard to get the right help, or even help yourself as well as possible, if there's just not understanding out there of the dynamics.

However given the early state of the research on this, I'm hopeful that treatments will be improved. I'm just a few years older than you, and also have lots of coping skills. They don't suddenly become totally useless, in my experience, but need to be repurposed to help areas that I have been ignoring -- and ignoring that I'm ignoring.

 

[Mystery]

Hi Greenleaf, thanks for replying. I read the 'category for poor prognosis' in the article on here on the articles page, I think it was the one 'Cureable vs Uncureable'. I've kinda gathered that from other things I've read prior to that. It says that prolonged and repeated trauma can be more resistant to good prognosis, something to that effect. I've always considered myself to have great coping mechanisms and that made me have a 'good prognosis'. I realize that we are all unique and that nothing is a constant too. I'm just sad today that I have to accept this in order to do something positive about it.

I've had a lot of terror in my life, some of it very prolonged over 28 yrs and a few extreme ones that were shorter in duration but extremely life threatening. What has really shocked me is that I'm not 'strong' any more. I weathered some big stuff for a long time and somehow wasn't easily triggered until recently. Now I have all sorts of symptoms, independent of my conscious, calm mental state sometimes. Like heart palpitations 24/7 for 2 months now, tremors most of the time, nightmares, cognitive problems, temperature regulation problems, plenty of other symptoms that tell me my nervous system is in flight mode.

So the journey takes a new fork in the road for me and I'm trying to incorporate this new view of things, whilst at the same time hoping it doesn't come to define me. I think that things can improve too, thanks for reminding me of that. I'm just finally at acceptance today after going through all the other stages of the grief cycle over this, for years.

I'm seeing a clinical psych but it's such slow going. I've spent 16 hrs with her so far and only just finished summarizing my lifestory! The hour is such a limit too, by the time I get into some stuff I find myself watching the clock so that I have enough time to come back to functioning level in time to walk out of there and go back to the world. It seems an impossible thing to do. Like it should be two hours at least.

Thanks again. :-)

 

[Mystery]

Thanks scout86, I really appreciate your welcome, feels like being the new kid on the first day of school, except that this is a really good school full of great people. I'm hoping that those things are possible, so so much because it feels like I've lost someone....ie myself, who I used to be. I used to say life was an adventure too, I hope I can see the glass half full with a twist of ptsd at some stage very soon.

 

[Chava]

Welcome. I relate to feeling like your nervous system has a life of its own. The nervous system can release old traumas, learn new patterns, change, and come closer to balance. In nerd terms this is simply the science of neuroplasticity. For me the hard, frustrating part is just feelin stuck sometimes because I don't know what to do exactly to re-wire or re-write an old pattern...or I feel good with the familiarity sometimes, especially in my more hyper states.

For me, these changes (or being stuck) are also in spite of my intelligence, like you mentioned. While a little research can be helpful sometimes, in the case of recovering my nervous system I think my need to know and understand actually holds me back sometimes...it's the part of me that drops into familiarity when I don't understand new information fast enough. I have to remain curious...willing to try new things, notice what I'm experiencing in my body, what helps, what doesn't, what is different, etc. But honestly, I'd believe it's not a quick process, even when we're really determined (patience is hard for me).

There's some abuse in my past but my extremely life-threatening traumas happened when I was very young and I don't believe I gained a very reliable sense of safety from my connection to my mom, since she was half terrifying. For most of my life I isolate to find safety, yet never really find it on my own....but also, there have been a lot of good moments, possibly as outcome of my fierce need to create meaning and good experiences. I've felt before that I am stuck in a pattern of over-drive and self-destruction that are so deepply part of who I am that I cannot change. But the extremes of energy out-put day to day have truly come closer to center over the past few years (I'm not stuck so much in extremes of hyper or frozen/paralyzed but operate more moderately active in my life...still tipping towards those ends when stressed or in pain, but it's much different and I'm not outright self-destructive....oddly I have an inner desire to take care of myself and I honestly believe that was absent for the first few decades of my life, so big changes CAN happen....gradually...)

I never thought it could be, but slowly I AM changing....and for me slow is key because I don't become entirely depersonalized in the process. It's harder to notice slow gradual change, but working steady and easy in therapy and day-to-day-life helps me remain intact....or I should say slowly pull the pieces of myself together vs fall apart. Even if they went missing before age 4, I do believe I can rewire my being to feel wholeness and safety. It's just taking time and commitment to my life.

Best wishes...that you are here suggests you still have hope. I hope this forum is helpful. Be kind to yourself one moment at a time.

 

[Mystery]

Thankyou so much Chava, I relate to so much of what you said. There is a scientific observer in me too, that analyses everything. To some extent it has protected me from feeling unsafe and just plain feeling at all! What you say about things moving closer to centre is really reassuring for me, that's my aim too. I've had pretty bad heart palpitations non stop night and day for two months now. I tried beta blocker for a week at the beginning and it just made me feel ill, so I'm trying to find a way to make this settle and it's not working. I'lm scared my heart will enlarge. I'm a nurse so too much medical infomation in my head too. Deep breath.....

 

[Chava]

I have a benign arrhythmia I'm keeping settled...hard not to worry I'm dying sometimes and that the doctors missed something. My moments of panic center around pain and unpredictable and scary body sensations right now. Do you see a trauma therapist? Ever done any somatic or body-focused work to address the nervous system needs? I like your goal of coming closer to center.

It's possible. I've let go of my ideas of perfection or somehow enjoying a stress free life...like I noted, my hyper side has had its own gifts (just leads to burn out and arrhythmia), so less the idea that I'm fundamentally flawed and broken and more accepting of where I am....I don't accept pain well (so if I'm ever on here sounding much less compassionate toward my process, probably pain is beating me up for a day or two and I lose my senses...just try to remember it passes!!)

 

[Mystery]

The lady I'm seeing is a clinical psych with a Phd (which was not related to trauma). She advertises one of her specialties is ptsd and she is a child psychologist as well so I do believe she has a special touch with the damaged inner child too. I feel safe with her even though it's early days. If I had abundant money I would go to all sorts of therapy but alas I haven't reached that goal yet. I

I feel scared all the time lately that my heart is going to give up. I had the full range of tests done on my heart, even all the enzymes and markers for a heart attack. All is functioning perfectly apparently except that it is palpitating and doing ectopic beats. I have to lay on my right or it just bangs against my ribs and stops me sleeping. This has been for two months now.

I did some psychodynamic body work 25 years ago and I've recently found a guy here in Australia (found him on the net but not seen him yet) that looks like he does that type of thing. Have you done this kind of therapy and found it useful? I'm interested to hear if you would like to share anything about it with me.

Yeah, I understand about pain, I'm like that with being physically sick or have gastrointestinal symptoms. Don't handle it at all. Some people just soldier on but I have to curl up in a ball til the virus or whatever has been beaten, it has never ceased to amaze me how people can soldier on when they are sick, then I realized that I have something else going on when I'm sick. Old stuff I think.

When you say pain do you mean physical or emotional? I will bear that in mind if we talk for sure. :-)

 

[Chava]

You probably have a good therapist, and if new, give that connection a shot. I always faired very poorly in "talk therapy" so somatic therapy is about talking about my concerns if I want, but also noticing what's going on in my body...not ditching my body and disappearing into my head. Like I feel sadness in my chest, I feel how changing my breathing takes the edge off of a panic, and I note this stuff to my therapist and she asks questions to keep me present...can also work on traumas at the body level, allowing for slowed down responses in the muscles, release through shaking or crying, support for nervous system regulation...turning on the parasympathetic response when needed or coming out of freeze response. My therapist has various somatic credentials...some of the common ones you might look for are Somatic Experiencing, sensorimotor psychotherapy, or anything related to trama-focused body psychotherapy.

See how it goes with your therapist or ask about how she focuses on trauma or helps with nervous system stuff. Some CB and other "talk" centered therapists do incorporate some of this by way of prompting body or felt sense awareness, working on breathing, allowing for movement or changing pisitions (curling up in a ball...my fave).

Sorry to hear about your arrhythmia...it sounds stressful. My comes on rarely but then exhausts me because it's so haywire. I'm glad you've done many tests. Maybe that's a place to start with your therapist, if you haven't already...before getting into trauma work it's so important to feel safe...the heart thing would feel really unsafe, right?

Pain I referred to for me is physical. But it sucks me into an emotional diwnward spiral...the whole lack of control/power thing. I know it will pass, but this knowledge doesn't always help when it's bad...yes, so much about helping the body rewire perceptions and experience. Good thing is most days pain is just less right now, so I'm doing something better. It really snow-balled over winter.

Alright, off to work. Good to meet you!

 

[TeddydaBear62]

That's me too. "Prolonged and repeated trauma" (not the same trauma, always anew one).

My doctor said before......"a person such as myself, needs support of loved onesand family". However, my "loved one" abandoned me.....and my last, close family member died. I feel I might be in that poor prognosis arena also.

 

[Mystery]

Hi TeddydaBear62, I'm sorry to hear you have no family support, neither do I, how amazing are human beings though! I. I had to divorce myself from my family of origin, it was just too hard and my life is better for it. The article was on the article page and its called Cureable vs Treatable. It said only a small percentage of people live with a severely debilitating illness, the rest have a better prognosis than that, some better than others.

It was saying that the longer duration for the trauma the poorer the recovery was. It also said that different people have better or worse resilience and that is a major factor in prognosis. I've just come to realize. own and accept that I live with pts (I hate putting the d on the end)! I just didn't want that to be true until it's undeniable. Being in the higher risk for more debilitating symptoms isn't a prophecy, it's just statistics. We are each able to do amazing things that defy belief. I was just having a pity party today, which is ok too, knowing that I've got to climb up a mountain with a couple of broken legs now. Stranger things have happened, I'm not giving in yet!