[GeminiNZ]

Really starting to fray around the edges.

Tomorrow is a 'big' trigger day. The next day i have to go to physio.

I don't want to. i can't do it. Can't let someone touch me. Not there.

Except that I don't have a choice because this injury will not heal any other way. And even then it won't heal permanently. This will keep happening. I can't bear that, can't bear knowing that even if i do somehow manage to put myself through this hell now, it will happen again.

I feel trapped and want to run and run and run until i'm far away and no one can touch me. I want to say 'NO'. I want to be able to choose to not go.

Have no idea how to deal with this. Need to be big and strong and brave, but I'm small and weak and a coward. Just want to curl up and disappear.

[Bluegrey]

(((GeminiNZ)))

I can very much identify with the 'I can't' feeling. I don't have any other suggestions, I'm sorry, but do send you comforting hugs and reassurance.


Bluegrey

[GeminiNZ]

Rough day. Big triggers suck and flashbacks suck, too. But i did a couple of things slightly differently this year and that made a tiny positive difference. And this particular day is nearly over now.

Met with Pdoc and care manager this afternoon (that was one of the different things - usually this is a day when I isolate entirely). It surprised me how helpful it was to say, out loud, "i don't want to go to physio!" And to hear them say, out loud, that it makes sense and they understand and would feel the same in my position.

I have to go. Well, i could cancel, but then i'd only have to go some other day, so it seems a bit pointless. Still dreading it, though. The pain is excruciating at times, and the dizzy spells are frightening, but I'm still more afraid of the physio, and of falling apart before, during or after.

At least i know i can call my care manager afterwards for some extra support. And email my T. And even better, i get to see T on Thursday. Looking forward to it, and I know he is, too.

[GeminiNZ]

Physio was horrible. Did all kinds of preparation, and grounding, and breathing, and it was still just so so awful. Cried through the entire session. The physical pain was manageable, but the memories and emotional pain were - and still are - so overwhelming.

Have to go back again in a couple of days. Not sure how i'm supposed to talk myself into that.

[Bluegrey]

You did do it though, (((Gemini))), well done for getting through it even though it was so hard. It's one less session left to endure, anyway.

Do you know how many physio sessions you are likely to need for your neck?

I'm so sorry you are feeling overwhelmed. It's awful. Keep on with the grounding and self-comforting. I hope you feel a bit better shortly.


Bluegrey

[avlady]

Congradulations for you. the thing that changed my whole outlook on my doc and t was when my t told me she wasn't the enemy but a friend

[GeminiNZ]

Feeling fragile. Physio stirred up so much physical and emotional pain and i'm struggling to hold everything together. Have to in front of my son, though, so it's good to be able to come here and vent now he's asleep.

Bluegrey, last time it took around five months of 1-2 sessions a week. But the injury was much worse at the start of physio because i'd collapsed so was assessed for other things first. This time, the pain is worse because it's a different disc compressing different nerves, but at least i recognised what was happening so started doing my exercises and using ice packs straightaway. And i was referred to physio first this time (have neuro appt early Feb).

So hopefully it will be a faster process. Especially as i have to go back to work in a couple of weeks. It's been a pretty lousy summer holiday.

[JaneC]

Oh Gemini, I am sorry this is so hard. It sounds just awful. I am glad you have here to come to also. We are all here supporting you as we can electronically.

But wow! You made it through today, you went and you made it through. You are very brave, and this means you can make it through the next session and the next. My hope for you is that they become more and more manageable as you go along, and with all the grounding and breathing work you are doing hopefully this will help that.

Also......your therapist is back soon right? I bet that will be a huge help with managing the emotional stuff?

Kind supportive

[GeminiNZ]

My son is away for ten days and I'm really struggling. Not so much with him being away because i know he's having an amazing holiday with his dad, is happy and healthy, and we've had some text contact. It's just that when i'm a triggered mess, i very rapidly lose focus on why i'm supposed to stay alive if he's not here right in front of me.

Slowly regaining more movement in my neck, but the nerve to my arm is still trapped so the pain is still pushing me to the limit.

Physio continues to be a triggering nightmare. On Tuesday, I was asked to lie down for treatment and i couldn't do it, just fell apart, sobbing and shaking. Dissociated. Left. Ended up cancelling Friday's session. Somehow i have to make myself go back there tomorrow.

Have had two therapy sessions. Both painful, too deep too soon, left feeling raw. Dissociated on the stairs after the last one - T found me when he was leaving 45 minutes later which shocked both of us. He sat with me for ages, bringing me back, grounding, supporting. But i feel like therapy is just another thing wrecking me right now.

Care manager came to my house for our session on Friday as I was such a freakin' mess and he was concerned that i wouldn't make it to him. I've been honest about how bad the ideation is and we talked about respite over the long weekend, but i chose to stay at home. Not sure that was such a great idea as I ended up having to call crisis today and get talked down from a very bad place.

Everything feels too much. But i keep telling myself i have to stay safe so i don't screw up my son's childhood.

[JaneC]

I'm sorry you are in such a difficult place Gem It is completely understandable to be feeling so awful with so much going on for you. I can only imagine how hard this is.....

I completely understand having trouble holding on when your boy is away......I too have struggled and still do with that. What can you do to keep him close in your thoughts? I finally figured that if I looked at a photo of my boy on my phone it grounded me very quickly. Maybe that will help?

It is great to have such a good team supporting you! Is respite an option now? Would that help? Having someone available to talk or just be there 24/7 for support could be useful. Keep reaching out to crisis as often as you need....you can always ask to go in any time if there are beds.

You can do this hun, and we are here to listen and offer support as often as you need also. Sending you kind caring supportive I'll be sending positive vibes out for you too.

[GeminiNZ]

Thank you, Jane, for the hugs and support. Very much appreciated.

I do have my son's photos all over the place, both around the house and on my 'phone and iPod. It does help to look at them, and to reread texts he's sending me (I keep texts from him, my care manager, and my T 'cos they're the people i find most grounding). It's just such a long time for him to be away, and i wasn't exactly in the best frame of mind when he was here.

I should be in bed. Sleep would probably help, but between the pain and this hypervigilant triggered state, it's hard to unwind enough to rest. My care manager is calling me in the morning to check in after the long weekend and to talk me through getting to physio. I really do need to go this time; missing another session isn't going to fix anything.

Just need to figure out how to slow everything down a bit. The pain triggers memories and flashbacks and ideation, and i start losing hold of when/where/how old i am. So i do grounding to stay in 2015, but when i'm grounded my attention is brought back to the pain and things start to go haywire again. Not a great cycle.

[Bluegrey]

((Gemini))

I'm glad you have managed to hold on so far - please keep going. And it's great that you have such a supportive team there.

The pain does make things so much harder, and I can see what you mean about the problem with grounding yourself bringing your attention back to the pain. A couple of ideas, in case either helps: I have a 'safe place' in my mind to go back to if things get too bad, and I made it somewhere I'm comfortable, warm and safe. You probably already have one, too, perhaps aim for there? Also, could the physio be done with you sitting but leaning right forward? I'm thinking of something like sitting on a chair the wrong way round, and the chair having a back that could tilt so you would be in a leaning forward position where you could have relaxed muscles. It wouldn't be as effective as lying down but might be easier to tolerate, perhaps?

We're here for you.


Bluegrey

[GeminiNZ]

I made it to physio, but it took so much energy and i was really not in a good place. We talked a little about the injury itself, a separate joint issue i have which is exacerbating things, the nerve pain, the progress i'm making with home exercises, and also about the upcoming neuro consult. I think we were both working hard to try to dial my anxiety down, but as soon as S. started working on my neck directly, i lost it. Tears, shaking, body memories. Just so much mess.

Even worse, for the first time she couldn't continue through it (usually i tell her to just carry on) as i was fighting her. Not in a conscious kind of way - she could tell i was trying to do full movements, my body (mind?) just would not comply.

I apologised profusely (so much shame), and once i'd stopped shaking and crying, we switched to trying out another exercise that i can do by myself. That went fine.

Afterwards, I cried more. Body is still somewhere else. Feel so fragile and messed up. Should be emailing my T, and checking in with my care manager again, but can't face it. I know they care, and want to support me, but i don't have the words to explain what i'm thinking and feeling clearly at the moment so contact feels like one more stressful and scary thing to deal with.

Even this has taken me ages to write 'cos i keep crying.

[JaneC]

Oh Gemini I wish I could do more than offer an electronic hug, but that is what I can do. And let you know that I think you are doing an amazing job of working through this despite how terribly hard it is. Just keep going hun....you can do this.

And please try if you can to reach out, you said you know you ought to and I am sure that your T and care manager would be glad if you did.

I am so glad you could come here to let some of the pain out, it is far better than carrying it with you all by yourself. We are here for you Gem take care sweet.

[Bluegrey]

You've done so well, just going back there knowing how hard it would be. Like Jane, I wish I could do somethng to help.

Just hang on there, at least there is the one exercise you can do by yourself. I hope things get a bit easier soon.


Bluegrey

[GeminiNZ]

Thank you for the support. It really does help to come here and offload some of the anxiety and pain, and the kind words and hugs are much appreciated.

Ended up calling crisis again last night. The CPN i spoke with was so helpful and we got things dialed down some so i could take care of myself again.

Called my care manager this morning, but he was off sick. However, someone from his team saw that I'd contacted crisis (they send my care manager a notification) and called me this afternoon to see how i was doing. Which was unexpected and so nice.

Had a home visit from my support worker, too, and although i was a bit of a shambles, it helped to talk about why and to be reminded that my reaction to physio makes sense under the circumstances.

And I had some email contact with my T. That didn't quite so well. Sometimes we talk past each other in email - missing tone and eye contact and all that stuff makes it a bit tricky, especially on days when he's emailing between clients and i'm a triggered mess. But while i may nitpick at his word choice, and then get all defensive about my own, there's no denying he cares.

So, yes, i reached out and got a whole heap of support and it helped. And i was gently told to reach out more often and sooner at the moment - need to remember that.

Best of all, though, my son called briefly this evening! Hadn't spoken to him in three days as they're camping in the middle of nowhere, but they'd gone driving and trekking up to a clifftop spot to watch the sunset and had some (scratchy) cellphone coverage so he called me. Just hearing his voice was so lovely, and so grounding, too.

Just need to keep breathing. Keep doing my exercises. And keep talking.

[GeminiNZ]

Got through another physio session. The touch is still intensely triggering so i asked for more exercises i can do myself to reduce how much hands-on treatment is required. Hopefully physio will feel a tiny bit easier now.

Had a pretty intense therapy session too. I'm really struggling with what this injury represents (and having that shoved in my face every time i go to physio), and with the impact physio and the fallout are having on other areas of my life, including therapy. It was helpful to talk about some of that, to soothe some raw spots, and to really connect with T and take in his words and his care.

Just wish i could shake off the ideation, which has stepped up from just thoughts to a more physical urge. Know why it's happening, know what it relates to, know that means it will pass, but it's still difficult and scary in the midst of it.

[Bluegrey]

Thanks for the update, Gemini. I'm glad you got through another physio session and that you are getting plenty of support. Where they gently told you to reach out more often and sooner - that seems like such a validation of how you are feeling at the moment and how much you have to deal with.

Ideation - not sure if I can really help, but I do sympathise. Just hang on. And call for help if/when you need it, don't try to cope too long on your own.


Bluegrey

[GeminiNZ]

Had neuro appointment a couple of days ago. They cancelled me 40 mins beforehand, then called me back 10 mins later to say come in anyway and we'll see if someone else can see you.

So i was frazzled already, and had to wait 45 mins to see someone who never even told me his name. But i still bravely gave my little speech (previously practiced with care manager) about having PTSD and needing to be warned and informed before any touch takes place. The consultant said 'yes', and then proceeded to do the exact opposite. I became quite obviously distressed, but he continued on moving me this way and that, even when i started shaking.

And then he told me there is nothing that can be done about my discs. Nothing. If it was the same disc each time, they'd do surgery, but it's not so they can't. There is no prevention, it will happen again, and may even happen more frequently as i age. And the nerve is obviously causing pain and restrictions in movement, but nerve damage can take six months to repair so go away and continue with physio and then come back in a few months and if there's still pain, they'll have a closer look.

It was dreadful and i didn't even come away with any kind of solution or even any information beyond what i already knew. Managed to hold it together until i got home and then broke down.

Everything seems so big and hard and frightening, and i feel that i am very small and afraid. Seems like i'm stuck in an emotional flashback so i keep working on grounding and trying to hold everything together, but i'm worn down and worn out.

Just so over it all.

[kim_johnson]

Hi.

We don't have a bunch of stuff around touch therapy in this country... Or perhaps in any country... I have issues with being touched, too. Something that I've found immensely helpful, and empowering, in my own case... Is learning techniques of self-massage. It helps to desensitise me to touch sensations and I can pace it myself... Or learn by a process of trial and error what is good for me. There are a bunch of places where you can learn this from...

I learned a heap from here:

Athletes Training Athletes :: Self Muscle Massage- introduction

If you click around a bit you will find detailed anatomy descriptions and (most helpfully, I think) you tube videos...

You can start out with something as simple as a tennis ball...

[JaneC]

Oh Gem, I am so sorry. That sounds so awful, and understandable that you are feeling as you do.

Keep up the grounding and try some self soothing too ok. You are doing so well to keep this up despite how difficult it is. I hope you are feeling better soon. Do you see your therapist or care manager soon? For some support?

Kind

[Bluegrey]

(((Gemini)))

I'm so sorry to hear all this - what an awful situation to be in, and what terrible news to have to take in too. As Jane said, self soothing is a good thing for now, and I hope you can be in touch with your care team soon.

Could you take someone in with you when you have the appointment in a few months' time? For backup, and to explain again (forcefully if necessary) about the touch issues?

In terms of the 'nothing they can do' - they must still have options or they wouldn't be thinking of seeing you in a few months. Nerve pain is really bad, I know from my own experience - but it can dwindle. Try not to be too tense physically, it'll make it harder, though I know it's very difficult to stay physically relaxed when there is pain and distress to cope with.

Wish I could do something to help. Thank you for letting us know what happened, and how you are - please keep in touch.


Bluegrey

[GeminiNZ]

Thank you for listening and sending virtual hugs and supportive words, it really does help.

So yesterday, after listening to me talk a little about the consultant ignoring me, a work colleague agreed that it was awful and then HUGGED me. This is someone who knows i don't like to be touched, and she'd just finished listening to me talking about someone stomping on my boundaries around touch, and she still hugs me!!

I held it together at work, came home and cried until my son got home, switched into Mum-mode until he went to bed, and then just lost the plot. Ended up calling the mental health contact centre (a step down from crisis) and being talked down by a lovely lady who said she'd be going out of her mind having to deal with everything i am at the moment.

Been in touch with both my care manager and my T - and they're in touch with each other at the moment, too. See T this afternoon. He sent me a text saying we'll go easy today. I really want to see him and be able to offload some of this heavy weight of pain and grief and fear and whatever else, but i'm also anxious about it as i struggle to experience him as kind and gentle when i'm so triggered and fragile.

And then it's a three-day weekend here, and my son will be away, and all my support people will be unavailable, too. I guess at least i can call the contact centre and/or crisis. And respite has been flagged in my notes as an option if i feel i need it. But that doesn't feel safe.

Nowhere feels safe at the moment. People don't listen to me and they touch me and they scare me and it leaves me feeling unsafe in my body and in the world. While they just carry on going about their day.

And the pain is doing my head in.

[kim_johnson]

Have you tried compression clothing, at all? Helps desensitize the touch, again. Tight lycra stuff can be a good start.

[JaneC]

Originally Posted by GeminiNZ

And then it's a three-day weekend here, and my son will be away, and all my support people will be unavailable, too. I guess at least i can call the contact centre and/or crisis. And respite has been flagged in my notes as an option if i feel i need it. But that doesn't feel safe.

Nowhere feels safe at the moment. People don't listen to me and they touch me and they scare me and it leaves me feeling unsafe in my body and in the world. While they just carry on going about their day.

And the pain is doing my head in.

So sorry Gemini. Some people are so clueless sometimes aren't they?

I know how hard it is, especially long weekends without my boy when I am not doing ok...so I can empathise with you. Please, feel free to pm me if you would like to for extra support. I have a feeling I'll be around.....