"The Storm"

[caringcaregiver]

(This might contain triggers; mentions of abuse in relation to C-PTSD but I keep it as vague as possible, no detailed descriptions)

Hello everyone, I'm new here. My partner of 11 years has bipolar II and severe C-PTSD from multiple instances of abuse occurring all throughout childhood, into young adulthood, and then going to Iraq with the Army in OIF 2 and part of 3 just sort of kicked off all of their (they are non binary) issues and started a downward spiral that led to delusions (making up past memories, hearing voices), suicidal ideations (and an attempt in 2013), major depression, panic anxiety, hyper vigilance, etc etc etc. They are completely unable to leave the house and can barely tolerate being present in the house. For a long time they were dissociating to the point of losing huge chunks of time and they were completely numb. Once we got their bipolar under better control, the voices and delusions started to clear up and they started getting more "clear headed" and over the last couple of years has been getting some memories back, feeling emotions finally. But all of that is too much.

They said they aren't feeling anxiety (one of their meds controls the constant anxiety they were feeling) but everything is just too much. They can't dissociate anymore or focus on anything at all, and every little thing, noise, light, activity around them (and we have two kids so it's impossible to get any quiet) distracts them and leads them into what they call a storm, where thoughts just start screaming at them from all angles and then they just start spiraling and have to lay down and sleep and shut their brain off. But they can't get away from the noise; like I can't get them to like go upstairs and just get some quiet because then they start feeling isolated and the storm happens anyway.

We are both at a loss. Their therapist has ascribed this storm to PTSD but we have no effective coping mechanisms. Everything has failed. Fidget spinners/fidget other things, reading, coloring books, apps, video games, meditation/mindfulness, talking, engaging in a project, every other thing we've seen that could be tried. They were diagnosed as ADHD as a child but it was also their parents doing the majority of the abusing so everything from childhood is suspect. And their team is hesitant to prescribe anything for potential ADHD or even look into diagnosing it because everything overlaps so much.

Does anyone here have anything similar? Is there any way you've found to cut through that storm? (Funnily enough this website is called Out of the Storm and that's what they've always called this phenomenon) Thank you. I hope everyone is having a good, low-pain, low-symptom day.

[Rainagain]

Hi

I don't have  much to offer but I think mindfulness would be something worth revisiting.

It won't work immediately, it might be hard to hold the mindful state for longer than a few seconds at first as it requires repetition and practice.

If you led a mindfulness exercise for your partner then that might allow your partner to access it more quickly.

I think its worth looking at as you have tried everything it seems.

If the time is still not right then remember to try again if things change.

I wish you well

[caringcaregiver]

Thank you for your response, Rainagain.

The biggest issue with mindfulness for my partner seems to be that focusing on something *here* (a sight, sound, taste, smell, sensation, thought, activity, etc) makes it worse. They really are trying to run away from being here, at least for a little bit, since dissociation was their major coping mechanism for most of their life. Any attempt to corral or pierce the storm by attempting to focus on something seems to make it come on faster (from their own words, we talked about it at length today) and they get really worked up. I haven't tried engaging with them during it so that could be something to try. They also like to play on their phone/tablet when they are overwhelmed, does anyone have any good app suggestions maybe? Their hands shake 24/7 so coloring isn't an option, and they love puzzle games but they are extremely specific about what kind of puzzles they like. A mindfulness app might be something to try since I can't always be there for them when they have an episode; either it happens while I'm gone (I run our entire house so I do all the errands and grocery shopping etc and also take care of the kids. They help where they can though, but I do most of it) or they don't want to speak up because they're in a fear moment.

[Blueberry]

Caringcaregiver,

I'm sorry, that all sounds really, really tough.

I can relate a little bit to your partner because I used to have a lot of trouble 'staying in the moment' in breathing exercises. These exercises used to bring things up. Unfortunately I have no quick solution for that. It came with time that I could stay with a breathing exercise or breathe a bit deeper etc. I've been in a lot of therapy both inpatient and out.

OTOH I don't have bipolar or any other complicated comorbidity (except depression and eating disorder etc.). Nor do I know anything about bipolar.

Long before I even heard of mindfulness, I learned visualisations and did imagination exercises, like imagining an Inner Safe Place. Then I could go away into that instead of staying 'here'.

Somebody mentioned on here that these types of exercises are listed in some DBT workbooks so if you thought that might work, you could maybe learn some and talk your partner through them? I didn't learn mine in the English language so I can't give you a link.

You mention CPTSD but that your partner's therapist talks about PTSD. I just want to check that the therapist is aware of the difference between CPTSD and PTSD? Even if many countries' healthcare systems and medical insurance companies don't officially recognise a difference, there is a big difference, including in treatment.

Also I'm wondering if it wouldn't be sensible to 'allow' some dissociation back in, if that's possible? I don't know - by altering medication etc (under care of doc of course). Dissocation is a protective measure and ime a mild case of it isn't particularly dangerous. I'm not a doc or a therapist though so you can take that with a large pinch of salt. 

[Rainagain]

When I was taught mindfulness we started with the feeling of the ground on our feet, just that, explore the contact you feel between the soles of your feet and the ground. Bring your attention to that area and focus your attention there.

I'm no expert (at anything) but the key seems to be to start in the same place each time, I.e. begin with the simple feeling of feet on ground.

If you are with your partner you just reinforce the focus is feet on ground. The mind wanders but this is the key, just bring the focus back, again and again.

Eyes closed, just say 'feel the ground pushing up against your feet, feel your feet pressing on the ground'.

The key bit is the return to the feet when other thoughts intrude.

Over time it brings control over the intrusions but it takes daily practice.

The feeling of having any control at all is refreshing, its not a fight against intrusive thoughts, its more like a shepherd bringing the sheep back into order gently, no matter how often they scatter and run.

No harmful drugs involved, no money spent, no success or failure, its a process you repeat whatever your last outcome with it.

Its like muscle memory. Takes time and repetition.

I use games to take me away from reality, I also have lost time dissociation episodes. I think mindfulness is healthier as its not voluntary or involuntary escape, you are remaining in the moment and trying to exert control over the now.

[Kizzie]

Hi Caringcaregiver - Have you and your partner ever considered a service dog?  I watch a lot of the shows about this and the support they are able to provide is quite remarkable.  A service dog would be a safe, reassuring, loyal and non-judgemental being to focus on and might reduce the need to dissociate as much or as deeply.  In two shows I watched recently two vets with PTSD had dogs trained to lay against or partially on their owners when they were having flashbacks/nightmares/anxiety - the pressure and warmth brings them back apparently and provides instant comfort and safety to be present.   Both people were able to go out more because they felt safer in general - both had been isolating themselves, one spent the majority of time in his basement  because it didn't have windows, there was no noise, etc. Given your partner is a veteran there should be help available in this regard, and organizations that will provide the funding.

One thing I have done in my own life to get out of the storm is turn my bedroom into a safe haven. It has both blinds and room darkening drapes, I have a noise machine and I  turn on the fan in the bathroom to drown out other sounds.  It lets my brain and nervous system settle.  I go there at least an hour each day to regroup or when I am feeling overstimulated which because of Complex PTSD does happen.  Back to a service animal, I suspect a dog being present in your partner's safe space would add a very calming influence as well as provide a sense of safety.   

Just some thoughts, I hope other members will have more ideas.  (Please do keep in mind that while we do have a degree of lay expertise from the lived experience of having CPTSD,  we are not professionals.)

[ah]

Hi Caringcaregiver 

A service dog sounds amazing.

The biggest issue with mindfulness for my partner seems to be that focusing on something *here* (a sight, sound, taste, smell, sensation, thought, activity, etc) makes it worse.

It's the same for me during the first few moments to minutes of doing it. I can strongly relate.

I try to do mindfulness meditation regularly because it seems really effective, and it has a cumulative effect.

But the first few moments can be tough. It forces me to sit with myself and that can be very hard. I think my anxiety level doesn't really change, but it's just that my awareness of it is heightened and I feel it more acutely.

Some days I can't do it, but when I can it's always very helpful afterwards. And I notice I'm slowly getting better so it takes less time to get into it.
When I can do it, after a few minutes my anxiety levels out and then drops significantly and stays much weaker for a few hours at least.

Another thing I sometimes do, which requires less awareness than "full fledged" mindfulness, is "just" breathing. It can be rough too at first but I noticed it helps even if I'm not completely focused on it so I can do it without having to be 100% present. Just getting into the habit of breathing differently helps my body relax a little.
I breathe in filling my stomach with air (really extending it) spontaneously, at my usual breathing pace, then breathe out very slowly, very long, till my stomach is flattened. I've read somewhere this helps the parasympathetic / calming nervous system kick in.
Apparently due to stress we tend to breathe backwards, we breathe all wrong, and it can make everything even harder.

[Dee]

I have two service dogs, a day one and a night one.  There are many organizations that will help vets obtain a service dog or train their own dog to be a service dog.

Here is what my dogs do for me.  They do medication reminders, they block people from getting too close.  They also post behind me when I am turned and alert me if someone is walking up to me from behind.  They can lead me outside if I have a panic attack.  They can wake me up from nightmares and comfort me.  They do help ground me during flashbacks, dissociation.  They stop me from self harming.  I have had some physical injuries (hip fractures) and I can use my bigger one to brace and help me get off the floor.  Also, I do generally feel safer with my dog.

There are down sides to consider as well.  Mostly, unfortunately, it is discrimination.  People always assume the dog is a fake unless there is an obvious physical disability.  What is almost as bad is that moment where I prove my dog is real, but those moments are bad either way.  It has happened that the discrimination against the dog caused the panic attack to which the dog has responded to.  There is also the dog to always consider.  Do I have the water dish, is there a place for the bathroom, will my friend be okay with a dog in the house.  Sometimes the dog can feel like a disability.  I almost forgot, the dog attracts people. 

However, for me the good far outweighs the bad.  Food and medical bills are a tax write off.

The ups and downs of service dogs.

[caringcaregiver]

Thank you everyone for replying. I'm sorry it's taken me a while to respond; life happens, as I'm sure you're all too aware.

I will pass on to my partner that it will be very hard in the beginning. We spoke to their therapist and she said that it's probably best to try it when the storm isn't in full effect. I'll try to remind them to work on it when things are relatively quiet and encourage them to persist. I know their limits, though, and I won't push them past that. They've been sending out feelers lately, which is great, they've been extremely isolated for the last few years as any contact at all has been too hard. So maybe now is the time to try again.

I have contacted every single dogs for veterans/PTSD operation that I know of. Either they don't handle PTSD service dogs or my partner would have to go to a personal training retreat for weeks (without me) to train the dog themselves under the eyes of the trainers. I have yet to find a place who wouldn't require that kind of a commitment from someone who can't even look outside the window or handle a phone call. Apparently service dogs for people who are extreme and severe don't exist, not that I have found. If anyone knows of something I'd be overjoyed. We too have thought that a dog would help. We joke that I'm their service dog since I have, just over long association, learned to sense their moods and I'll come over and touch their arm or lean against them when they're spiraling. Not always, but most times. I don't even realize I'm doing it most of the time. It's strange, the connection we have. But unfortunately I also have to deal with shopping and our kids and the finances and cleaning and all the other caregiving activities on top of being chronically ill myself (I have a rare genetic disorder, Ehlers Danlos Syndrome and several comorbid conditions) so I'm not always physically present like a dog would be, so I don't claim that I'm a suitable replacement. Going back to dogs, we are actually considering just getting a family dog and either trying to work training it out for ourselves (which I know some people choose to do) but that has its own pros and cons. We do plan on getting a dog either way, whether we decide to train it or not, but the backyard isn't safe yet and it will probably be several years before we can save up enough money to make the renovations necessary. So it's a really tough situation all around.