New and Some questions

[Unicorn13579]

Hello. I have joined today as part of trying to move forward. I have just started counseling and have had a few short sessions in the past a few years ago. It has dredged up some dreadful memories of childhood that I have buried, and i don't know how or even if I want to tell my counselor. I have admitted to myself and my carer that I have had thoughts about not wanting to live anymore and how much I do not want to be in pain anymore, but also that I love my life when things are good and want to achieve so much more. I have T10 incomplete paraplegia and the nerve pain is extremely bad at night when I want to be asleep. The problem is my counselor said I now have PTSD and I am having trouble sleeping, with nightmares. He has given me a sleep book. I want to know if I share this with him, about the childhood issue and feelings of the above will this remain confidential, even having discussed it here. It is not easy to talk about these things. My cousin Joe committed suicide a few years ago and that was an incredibly profound time as I was learning to walk again when it happened. No one knew how he felt. T cam very much unexpected and a shocm to his family.

[Sophie_M]

Hey Unicorn13579,

Welcome to the Forums, and thank you for sharing your story with our community. We can hear you're dealing with a lot and finding the nighttime particularly difficult - we're sorry to hear that. 

We're glad to hear you've been able to feel comfortable opening up with your carer about your thoughts of not wanting to live, and not wanting to live with pain anymore. That's not an easy thing to do, and it's really good that you could share this here also. We can hear you're feeling undecided about sharing these thoughts and the memories you mentioned with your counsellor. This is a really good question to have shared here.

It's really important to speak about thoughts of suicide when they arise. Due to privacy laws, this information remains confidential. Your therapist cannot tell anyone anything you tell them, however, they do have a duty of care if someone states they are at imminent risk of suicide. If you are not in any immediate danger, this does not fall into this category - thinking about suicide and actually having a plan to do something are two different issues.

We are reaching out to you privately to offer our support, and we hope you can continue to share what's going on for you here. If you feel like talking to one of our counsellors (phone or webchat), these calls are also confidential. However, if you do disclose an immediate risk, we will to work with you to keep you safe.

Thanks again for your openness in sharing your story here, Unicorn. Hopefully, we'll hear from the community once someone spots your post. 

Kind regards,

Sophie M

[Eagle Ray]

Dear Unicorn13579,

I responded to you on another thread but just wanted to extend support to you with what you’ve written here. I think it’s so important knowing that you love your life when things are good and want to achieve so much more. I also know it is so hard when in pain and the overwhelm with everything you’re dealing with. It’s really good you could open up to your carer and here too. I think maintaining contact with another human being is so important when vulnerable. I went through particularly severe pain from 2005-2008 and had three occasions where I really didn’t want to be here anymore, and each time it was contact with other humans that pulled me through and kept me going. As I mentioned on the other thread I often hide from people due to past trauma, yet it has been people contact that has kind of held me and kept me connected to life.

Having a love for life is wonderful and I think the key to much healing and repair is embedded in that. Beyond Blue have a Beyond Now app which may be helpful in making a record of the things that help you when vulnerable. And calling the BB helpline can help too, just having someone to chat with. I have done it a few times.

 I’m so sorry for the nerve pain you are going through at night. One thing I found helped me at least a little when in severe pain was imagining/visualising a white light that came down and broke up the pain as it cleansed my body. It took a bit of the edge off. I found I was bracing against the pain as well, so I learned to kind of ease into it rather than fight it, if that makes sense, and that seemed to calm the pain signalling in my nervous system a bit. It was like releasing the constriction/bracing my body was doing in response to the pain. Another time I patted a visiting cat and that quite significantly reduced the pain level. It was connecting and bonding with another living being that seemed to shift my nervous system response as well. I was on synthetic opioids which provided a bit of improvement, but these other things were important in managing pain. I was eventually able to join a singing group for people wanting to learn to sing and as I learned to find my voice that too helped shift things in my body. It helped me develop a bit of confidence to actually express myself and it’s like the resonance in the body is healing via the vagus nerve. There is a book by Peter Levine and Maggie Phillips called Freedom From Pain that looks at healing pain via the vagus nerve and autonomic nervous system. Peter Levine has been working in the trauma field for several decades including treating people with PTSD, so just thought of him if you are dealing with both pain and past trauma.

 I hope that’s not too much info. I just wanted to share some things in case they’re helpful. Take good care and reach out whenever you need support. Sending you care and encouragement.

[Unicorn13579]

Hello Eagle Ray,

Thank you for your kind and thoughtful insights. Sem lovely sentiments. I often find comfort in my budgies i share with my daughter. I use to do this with my mini lop but he passed away in 2020. He had a good life and was super loved but they are short life sweethearts being so highly bred. My budgie boy Jess has just learned to do kisses and is getting on my hand to eat millet in the cage. Later this year we will train him to come out I can't wait! I sing too and play piano and write music. I also joined a choir at the end of last year, with a local group we do such a range of music. I am sure I will get through. It's good chatting to people, absolutely. I had counseling today and it was very good. It's rather poignant that you should mention the autonomic system. That's part of what has thrown me into my current downhill turn. In April this year, I was diagnosed with Autonomic Dysrefelxia, where my system above my level of injury doesn't talk properly with the bottom anymore. They don't fully understand why some sci people get it and some don't or why some get it with 12 months some delayed like mine. Basically, my body detects something below T 10 and sees it as the enemy and it sets off a domino of high BP (180 plus/120 plus) my normal BP as is usual for many sci people is 90-100/60-70 or so. You get severe headache, flushing, nasal congestion, goosebumps, anxiousness and chills. Usually, I can treat it at home with a set of procedures, and keeping the temp stable with aircon as well as GTN but sometimes you have to go to the hospital either by ambulance or by car depending on how urgent. My nerve pain will be with me forever. I do use a TENS a lot, heat, cold, and gentle exercise but sometimes no matter what you do your brain just has enough. I won't ever get rid of mine as it's lifelong and the nerves cannot heal but some areas can still change. My right leg has changed a little, that's promising but the left will always be paralyzed that's why I am getting a Cbrace soon. I called Lifeline for the first time last week. I am pleased I did. I have just learned to do some mindfulness and grounding today. That should help a lot. Thanks for the chat:)

[Unicorn13579]

Thank you very much. I will take this all in, you are very kind. I am pleased I joined.

[Eagle Ray]

Dear Unicorn,

 I loved hearing about your pets. The budgies sound gorgeous and mini lop rabbits are so cute! It’s lovely you gave him a good life. That’s just wonderful you play, sing and write music. I have recently just started singing and playing my guitar again and wrote my first song in 13 years after a long break from it. I find it can be quite transformative of how I’m feeling and is a very healing thing to do. That’s great you are part of a choir too. There’s something about singing with others that is deeply healing and meaningful.

The Autonomic Dysreflexia must be quite a challenge. I’ve learned quite a bit about Polyvagal Theory in recent years in relation to my own health issues and trauma patterns in my body and have found it quite helpful. It’s an understanding of how the different autonomic processes work to sense and experience safety and maintain homeostasis. It looks at ventral vagal function (rest-and-digest mode when we feel safe), sympathetic activation (the active state that includes fight-or-flight) and dorsal vagal function (when we freeze in response to a threat). A key component of reaching homeostasis is co-regulation where our nervous system is in resonance with another being (human or non-human animal). I’m wondering if there’s anything in that that would be helpful in relation to AD. What you are doing already such as singing with others is so healing for the nervous system as it promotes those co-regulation processes that bring more balance to the autonomic nervous system. It would be great if the parts of the system below and above your injury could talk to each other again and remove the detection of threat below T 10.

I’m so sorry you have the nerve pain. I hope that you can at least get some changes over time that make things easier. It’s great you reached out to Lifeline. Just having a chat with another person can be calming and reassuring. It sounds like you are getting some helpful strategies and techniques too for managing things. You are very courageous and I really wish you the best. I can tell you have a love for life and much kindness and goodness and those are the best ingredients you can have going forward. Take care:)

[Unicorn13579]

Hi Eagle Ray, That's fascinating about all the body's Autonomic responses and what you have learned I love learning. The Vagus nerevb they are doing studies with it with Migraines i jhave chrcoic ones and i am following teh studies to see where it goes. I never said but I also have MD and am slowly looosing my central vision. The left eye is gettign worse i will  lose my licence eventaully but my rigght eye is hodling on if i cover teh elft teh rigt s a bit iffy but if i cover the left ots blurry and teh writing beds all over teh place but together both eys are pretty amazing. Crazy out bodies! its hereditary called Bests macular degeneration. When I get my Cbrace and my mobility safer (at present i fall a bit) and i can be upright on elbow crutches longer than a half hour stable I want to learn again. Sadly there is nothign that can be done about the AD for now apart from attending to the triggers which are bladder (catheterize which i have to do 4 times a day as i have no feeling for use anymore or bladder spasm, bowel triggers, too hot, too cold, catheter kinks, ingrown toes, apin below t10 (which can be abdominal, strong nerve or injury, tight clothing, kink or rock in socks or shoes, and a few more. Youe have a lits of your triggers and have to go down the list until you satisfy teh one causing it. I am learnign mine, so far baldde spasm, bowel, too hot. too cold and pain below t10. You try each one until you fisn the cause for tat episode. Even a UTi or bowlel uposet can cause it. Its frustrating but I do have plenty of smooth sailiogn wqhen its pretty good. Like today it only happened once when i haD hydro and got out of wqaerm pool into cold air as ist near the river and ocean and quite cold but once i had got to the disabled shower i was warmed up and it settled. I don't need teh BP machine to tell me as i get flushes goose bumps below tT10 , anxious feeling, chill without fever and headache. Once you sort the trigger your BP comes down to normal which for me is low and its good times:) I am getting used to it very slowly. They are working on a spinal cord cure right now, check out Spinalcure Australia and project spark, Ive met Duncan Wallace and Perry Cross Institute,met him too online, SCIA. I have talked with Sam Bloom online too and met her shes very awesome. SCIA are my support coordiantors. I do Neuromoves every week its a gym for spinal cord people, pretty amazing we work on Neuroplastcity every week. Very soon they are going to hook my feet and spine up to NMES and FES and the electrodes activate my paralyzed muscles and its supposed to aid sensory and muscles i am a guinea pig as its very new for under the feet and sensory. Since Neuromoves I have has very tiny changes in my right foot which can sense slight texture now after months of training. It's scary but who knows where it will go? A shame I can't send photos but you can check out the CBRACE I am getting by typing it in search. Thanks so much for your chats, I am very grateful and it is so helpful. I am slowly building strategies, yes, and this is one more:) I am determined none of this bad sad stuff will define me ever. Just a bad patch and I will get through it. I sort of got offered a job today out of the blue from SCIA but i can't do it sadly who knows what the future will bring.

[Eagle Ray]

Dear Unicorn,

You are dealing with so many things and I really admire your courage and spirit. I googled a CBRACE to see what it looks like and it looks like amazing technology. It will be great to have easier and safer mobility. I’m really sorry you are having to deal with MD too on top of everything else. I’m also sorry you have the chronic migraines. I get them too though not quite as frequently as I used to. I know they are horrible.

The Neuromoves sounds promising. Neuroplasticity is an amazing thing. I read about a guy named John Pepper who has had Parkinson’s for decades managing to retrain his brain through a walking program he devised for himself. He recruited other parts of his brain to compensate for the parts that weren’t working. He actually was able to come off the meds he’d been on for years and no longer walks with a shuffling gate. I read about him in Norman Doidge’s book The Brain’s Way of Healing. I really hope you keep getting some positive changes with the Neuromoves such as the ones in your right foot. I had a look at Spinalcure Australia and Project Spark. It looks exciting and promising. I can see how every bit of improvement in functionality can potentially make a big difference.

It seems like you are tackling things on many fronts from different angles. You are really proactive, inspiring and positive in dealing with the multiple challenges. I hope you can keep feeling supported here too any time you need encouragement or to just express how you feel. If you ever feel stuck or overwhelmed know there are always people you can talk to.

Sending you every encouragement and best wishes.

[Richju]

Dear Unicorn13579,

I'm sorry to hear of your many issues, especially from your childhood. I have found counselling with artwork and sandplay most therapeutic to approach difficult childhood memories. I'm not sure if your counsellor is trained in these areas but he may be able to refer you to a specialist counsellor.

I hope this helps.

Kindest regards,

Richju