Lived Experience Forum

[Former-Member]

I need some support here guys.

Does anyone here have bad nights. I get night terrors and it takes me ages to ground myself afterwards. I struggle to understand that it is just my mind and not actually happening but everyone around me says it's not happening and that I need to trust them. I sleep on the floor with no blankets so I'm cold and it's easier to wake up, have bells on my door, have my dog in the room but nothing seems to work to reinforce that there is no one coming into my room.

I am doing EMDR ( just starting). Does anyone have any experience with this? I am finding it completely overwhelming. 

it would be great to hear other people's experience as I need some hope that things will get better. 

Thanks. 

[Zoe7]

Hey @Former-Member A little background on me to hopefully help here. I had many, many years of those horrific nights when I did not feel safe and would wake from vivid nightmares thinking I was back in the past and in fear of my life. It is very real when you are going through that and very distressing every time it happens - so I completely get what you have been dealing with. It is very hard to trust anyone when your whole body screams you are unsafe - I used to feel it physically as well as mentally - like I was in a never ending nightmare that nothing could alleviate. What got me through so many of those nights was actually the support I received from people on here - they would sit with me and talk with me until I came back to reality. I also had a great support team that I could call at anytime of the day or night.

I tried EMDR but for me it was re-traumatising. My GP stopped it after she saw me after one session where I was not only an absolute mess but also suicidal ...it was the right decision for me and I have not gone back to it. But that is my experience and I know others here have also done EMDR and found it extremely beneficial. I am going to tag one member who I know has had great success with it but she may not be on for a while ... @eth if you are able please jump in here Hon.

I think there has to be a right time to go through EMDR and for me it was not. Along with my support team we have made the decision not to revisit EMDR but I am also in a better place now than I was a couple of years ago. I have medication that has helped with the nightmares and gone back to work fulltime. I still see my supports regularly but I also have strategies in place that help in the difficult days (and there still are many). I also have my support network here - and those people are my rocks when I am struggling or having a bad day.

I hope you find the same as I have here and that it becomes a place you also feel comfortable, supported and cared for. Please ask any questions you have and continue to reach out. You have taken the first, brave step and that shows me you have courage. I look forward to getting to know you more and helping as much as I can. Again - welcome to the forums 

[Former-Member]

Thanks for your encouragement @Zoe7  .

Having nights like this is very isolating as I can’t stay at anyone’s place as I generally wake up screaming a couple of times a night - so this whole Christmas and holiday season has been difficult. The only thing that is working at the moment is keeping myself awake in the second half of the night. I’m not working at the moment (school holidays) so it isn’t too bad as I can have a sleep during the day so that I am able to function but this is not sustainable.

I too can physically feel what is “happening” to me at night. I can also see and smell the person. It’s easy in the daylight to identify this isn’t happening but during the night I am consumed with fear of what is going to happen and then after it has “happened” it’s about getting myself back down and grounded. Have you used grounding techniques that yo have found useful?

i have tried medication but I worry with taking it that I won’t wake up properly and be able to “ do what I need to do during the flashback/night terror”. I have a good support team however they aren’t always available. Hopefully I will find the forums helpful like you have.  My friends and family know I struggle a bit but because I seem ok during the day they don’t know what my nights are like and I don’t really want them to as there isn’t much they can do to help. 

I spend end most of my time by myself as if I’m around others I feel very unworthy and like a fraud. Thanks for sharing your experience with EDMR. The psychologist that I see has spent a long time working on getting to know me and making me feel like I can trust her. She has even suggested that I bring in my dog to our next session as she (my dog) is great for helping ground me during the EDMR sessions. It would be great to hear @eth experience. 

Thanks for for your welcome and please feel free to tag anyone who you think would be good to get to know. 

[Zoe7]

It took a long time toget the right meds and dosages right but I am now on levels that are helping. I recently ha an increase in one night med as the nightmares had returned ...now they are very infrequent and not as invasive so that is a positive @Former-Member I personally could not function without them but have also needed to work out a good routine to take them so I can function the next day.

Toby (my dog) and Cat are my primary grounding sources. Hugging them and feeling them give that love back helps me more than anything else In the past I have had a lot of difficulty when those nightmares hit in being able to ground myself - and often turned here to the forum to talk through it and get support. Now I am in a much better place and am able to keep myself safe even when the nights are horrific. I did 2 rounds of DBT and some of those skills have really helped ...mainly identifying the main emotions and sitting with them when I can - acknowledging what I am going through is real but not letting them take over everything. It is not easy to do and does take A LOT of practice. For me - fighting what I was dealing with just made it worse. After the initial confusion and fear diminished I could breath through it. That sick, lingering feeling of dread took a lot longer to go but doing things to take my mind off it helped when I was a little more grounded ...I would often do housework to take my mind elsewhere - and doing something physical also helped.

Just like you - I used to stay awake after a flashback or nightmare - it was easier that way to deal with. Now I can often return back to sleep but it is on the couch where I can snuggle with Toby and feel safer. Bed for me can be a massive trigger - especially when I am not doing so well - so I often stay on the couch. I am okay with that if it means I get sleep and if I do wake with a nightmare my surrounds are not a further trigger.

I too am on holidays presently for school holidays. It has been one hell of a year for me (not just with COVID) but with multiple deaths of people I have known, personal injuries and long, long days for work - so it is a time now to reset, look after myself a bit better and find stability again. It is a continual process to find that balance and just that little bit harder when we are also dealing with a mental illness.

[saltandpepper]

Hi @Former-Member  I'm sorry you're having such a rough time with sleep, sounds like you don't get many/any nights free from your truama. That must be exhausting.

I have had a lot of trouble with sleep as well, though my experience is different to yours, I hope I can help.

Years ago, prior to therapy, I used to suffer from nightmares frequently, just about every night for years. Now, while the intensity of them is still very much the same, the frequency has dialed back drastically. I hope that with time this will be the case for you too.

I used to supress a lot of what had been causing me distress, and it tended to crop up of a night time I think because I was so focused on never thinking about any of my past trauma. If anything ever came up for me during the day I'd try to mentally slap it away and ignore it. Since being in therapy and having a safe space to go through it all, it's helped relieve some of the pressure there. For me, talking it through with my therapist has been beneficial, but it's not helpful for everyone as it can be retraumatising. In my case, pushing everything aside during the day only encouraged it to come out of a night. If it is safe to do so, I'd recommend devoting some time to acknowledging your trauma and grieving. But only if it's safe to do so. And I'm only saying this because devoting time to my trauma during the day has given me some relief of a night.

As for the nights themselves, I'd recommend changing it up in your bedroom. Get some reed diffusers or scented candles or anything that has a strong pleasant scent and pop it close by to where you sleep. Try a night light or use some of the lights from the Christmas tree and hang them up somewhere in your room. Get different bedding, get something with a distinct feel like satin or flannel sheets. Get a fluffy or scrunchy blanket, try to get things that you're able to distinctly feel at first touch. Start using a white noise app. I use one that makes rain sounds or fire crackling noises. The idea is you want to do everything you can to engage your senses, sight, sound, touch, smell. Have a think about what changes you can make or what you can add to the room to help engage your senses. Doing this can help ground you after an episode and the hope is if you can create an environment different to the trauma, it should help ease the intensity/frequency of flash backs/nightmares.

The advice from my therapist regarding nightmares is to get up and out of bed straight away. Go and splash cold water on your face. He's told me staying in bed isn't a good idea because your brain can end up getting stuck in an associative loop of bed=trauma. So, I suppose it's about doing what's possible to disrupt that pattern.

I hope I've been able to help. Though our circumstances are different, I'm hopeful you'll be able to reach a point where you have nights free from trauma too. Stay safe.

[Former-Member]

Thanks @saltandpepper . The idea of not pushing stuff away during the day is a scary proposition but one I might need to give a go as I need something to change. Trying not to sleep at night doesn’t really help anything. My bed is not a safe place for me so I sleep on the floor. I try and engage my senses with the 54321 of what can I see,hear,feel etc when I wake up. The trouble is the telling myself and believing that “it” hasn’t actually been happening, I can feel, hear and smell like it’s all consuming and actually happening. I generally get up and go out into the back yard and walk around on the grass.

one of my issues is the anxiety that comes with each approaching night. The relief I hear with the first chirping of the birds a bit after 5am is such a welcome sound. Did you do any particular type of therapy?  I have started seeing a psychologist ver the last 6 months and I have done a lot of work on getting a safe space I can go to in my mind, things do spiral a little bit more and more out of control as my sleep becomes less and less. 

I need to to keep working on more positive coping strategies to manage distress. Do you have any strategies that work. I try distraction, delay and opposite action. But find myself reverting to old hapbits. 

Thanks for your reply. 

[saltandpepper]

@Former-Member 

I find the 54321 grounding technique very helpful, although when I'm in a state of extreme distress all sense tends to fly out the window. This is why I'm suggesting that you make whatever changes you can to your room in the hopes that it helps pull you out of an episode quicker and brings the anxiety down to a more manageable level.

Is it your bed iteseldf that's distressing? Or is it the concept of the bed? If it's the bed itself, get rid of it. Just chuck it. Have you thought about trying a water bed instead? Or getting a new bed and adding a mattress topper or something to it? Just do what you can to make it different. Or if the bed is a no go, what about getting a nice couch instead? You deserve to hav a comfortable space to rest.

I too am all too relived to hear the birds of a morning, perhaps a bird white noise sound may help alleviate some anxiety? Worth a shot. Hell, release a bird into your room so it can flap it wings and chirp around all night--jokes. That'd be awful.

I remember having that anxiety around bed time, I used to be terrified to go to bed and operated on a few hours of sleep for a while there. I didn't make a concious effort to alleviate that stress but over time, with therapy, the stress disolved. I'd say the key thing to my recovery has been acceptance.

I too went through the strategies and coping mechanisms with my therapist in the beginning. One thing jumps out at me from the earlier days was delaying. The intrusive thoughts that popped up during the day I used to dismiss all together, I started to learn to acknowledge them. I didn't let them become a prominent thought during the day, just acknowledged them as the thoughts came up and told myself I would sit with that later and think about it. I used to carve out some time in the evening just to sit and reflect and process whatever came up for me during the day. I think this has been the biggest thing to help me. I no longer ignored the thoughts, I acknowledged them and gave them the time they needed. No one wants to sit with traumatic memories or thoughts, it's natural to fight them off, but with help, I started to realise I needed to acknowledge my trauma. I think we owe it to ourselves to process what's happened and grieve our loss. Not doing so feels like I'm denying that part of me, and that pain deserves to be felt, grieved for and healed. But look, different circumstances, so talk it over with your psych and see what they think. Looking back isn't for everyone, it's just the method that has helped me. But I do remember how helpful it was for me to have that devoted time during the day to sit with everything, I think it helped a lot in reducing the nightmare side of things.

The other thing, again not really a technique, has been learning to accept what has happened and the affect it's all had on me. I spent a lot of time fighting that too, not wanting to accept my mental health issues and living in denial really about everything I went through. I accept that as a result of trauma I have anxiety, I have depression, I have days that are complete write offs, and that's ok. Accepting that those issues are a part of me, accepting my trauma rather than trying to fight it, has given me a lot of peace.

If I had to point to one single thing that's helped me get to this point, it would be that, learning to accept myself and my trauma and finding a way to be ok with who I am as a result of it. With time everything else seemed to ease off in intensity the more I worked on processing and acccepting my trauma. I've been in therapy consistently for about 3 years now. At 6 months I was very much still in the stage of learning techniques to help manage the immediate stress I was under. Is your psychologist trauma informed? That's the other thing, make sure your seeing a psychologist who specialises in PTSD, makes a world of difference.

I hope that all made sense, let me know if it doesn't, my head isn't all clear at the moment following Christmas. But your post resonated with me so I wanted to try and chime in

[Former-Member]

Hey @saltandpepper 

thanks for your reply. It is  concept of a bed, any bed, when I was in hospital I was sleeping on the floor. I do it for a few reasons. I am scared shitless of hoping into a bed (past trauma). I want to wake up as quick as I can and by keeping uncomfortable and cold this means I never fall into a deep deep sleep and find it hard to wake up. So getting a “bed” alternative is not something I can do right now as my fear is too great.

Ive downloaded some bird song to try that tonight. As night approaches I oscillate between walking/running on treadmill and curled up on the couch watching crappy tv or reading. I lost my job and don’t have another one at the moment. It’s hard to put in applications telling people how great yo hare when you feel like shit.

i have only just this year begun to accept that due to trauma I do have mental health issues that need to be addressed. I have been in hospital several times this year and it has resulted in me only being able to see my kids for 1 hour a week at the moment. My ex thinks I am not fit to be a parent because of my inpatient stays. I am not very good at accepting that my trauma has impacted me so much - I am scared that when I really get it’s talking about it that I am going to explode and the memories and feelings will be way too much for me to handle. 

Soemtimes i I write down what is going on for me and this helps a bit. I might try and do this a bit more as a way of being more accepting? I don’t know, it’s just all a bit much and I wish I could just stop my head for a bit. The thought that it’s ok to have days that are complete write offs is something that is good to hear. I hide how I manage things from friends and family as there are many days that are write offs for me at the moment. The psych I am see is trauma informed. We are going to start doing EDMR in the new year. She is letting me take my dog into the sessions to help me feel safer. So I am hopeful that this may be a way I feel more able to explore and reprocess some of the memories so that they no longer have this grip on me.

your post makes great sense. Christmas is certainly a busy and consuming time of year in so many different ways. Thanks  

[Former-Member]

Hey @Zoe7 

Meds are a tricky one. Whilst I have tried them and they did mean I slept more, the inability to wake and be alert, as well as the feeling of being a bit zoned out most of the time meant that I am really bad at taking them. When I have been in hospital they have tried different combinations but haven’t found one that works that I am committed to taking once no longer inpatient.

my dog is the best at grounding me. She always seems to know when I need her. I did DBT but I think I wasn’t at a place to take on a lot of the information. But I did pick up quite a few coping strategies. However they all dissappear during the night. I need to practice some of them during the day when I am not as scared and overwhelmed, something to work on in 2021.

when I am up during the night I also do housework. Last night I cleaned the fridge inside and out. Physical exercise is good but I often am just too exhausted to do any and end up doing nothing worthwhile for the whole day. Reading, listening to music sleeping and watching tv are not great daily achievements. I am very ashamed of how I spend my days.

i hope you are able to recharge a bit over these school holidays as it sounds like you have had a difficult year. I am sorry for your losses during the year. Hopefully you are getting glimpses of that stability you are wanting. Thanks. I hope you’ve had some quiet time today,.

[Zoe7]

@Former-Member It took us 2 years to get the right meds, combinations and dosages that worked for me. There were many times I went backwards and some really nasty side effects of some but I was also lucky to have a great team around me to help me through. At one stage I was seeing my GP everyday and she would call me on weekends (sometimes nights also). I also had the number of my psych - so I had 24/7 support if I needed it - very much above and beyond by both of them. Along with the support from here (members, mods and a previous Community Manager) I really did have the most wonderful support - and it did make the world of difference ...still does.

I very much understand that fear of bed. For most of those 2 years I could not face it myself either. I either did not want to go to sleep for the fear of what that would bring or did not want to wake up to have to go through it all again. There was also the fear I would not wake up so it was all really confusing. The thought of bed also brought on flashbacks soI would stay where I felt most safe - sometimes that was curled up in the corner of the loungeroom 

Just like you my dog isthe best for grounding me. He is my little buddy, my shadow and the light of my life. My Cat is that too but cat's look after themselves - so whilst I had to survive to look after her I also had the unconditional love every second of the day from my dog. I love them both dearly and am grateful I have them because they have saved me more than once.

DBT is a great course to do but you do also need to be ready for it - it takes time, energy and a lot of practice. It is hard to use those skills when we are at our worst but when they become part of our usual everyday behaviour they are easier to call on then. There are times when I wake suddenly in the night that I cannot use those skills immediately but that is okay too. Re-orienting myself, finding Toby and going from there works now for me. There are still times I am so overwhelmed with those memories that it takes time to become grounded again - and I often have 'residual' feelings that carry on into the day - but those incidents are lessening in both frequency and duration. But to put that inot perspective - I have been here on the forums for 4 years and the first 2 years I was an absolute mess - it has only been in the last 2 years that I have taken such massive steps forward - so whilst that may seem a very long time I am forever grateful to those that have walked along with me. stuck by my side, supported and encouraged me along the way.

Having a mental illness does not have to define us but we do also need to find what works for us to continue to fight through each and every day. If that means spending your days reading, listening to music, watching tv, sleeping or exercising - then that is okay. Fighting your own way to get through is nothing at all to be ashamed of. I have done most of those in the ast also - some days I just would not be able to move - even to put the tv on. So allow yourself the time and space to work through what you need to in your own time and own way. I suppose what I am saying is that despite all that there is hope. I am by no means 'better' but I am better than I was and I can see how very far I have come - and that is something to be very proud of.