Could I Have Some Urgent Encouragement Please?

[barefoot]

Only just seen this so I couldn't send encouragement beforehand.
But well done - you went to the appointment and you got through it! :-)

I really struggle with some medical stuff too - including things that other people would think are very straightforward things (which they are) so it wouldn't be expected that someone would freak out about them.

For future reference - the way I try to handle it is just to be as prepared as I can be. So that mainly involves thinking about what are the possible triggers for me in the scenario and what can I do if I can feel myself getting overwhelmed in the moment. So, as @FridayJones said, in this scenario, you could have ripped the thing off your arm. Or you could make some comment as you feel it getting too much - something like "oh, I really don't like this feeling" or "ugh, this is making me feel really funny" or something. Sometimes, articulating it is enough - just sort of naming it for yourself. Sometimes, it is useful for them to have a heads up...if you made a comment and they could see you were getti stressed, they may offer to stop or whatever.

What I found liberating was the very simple thing of knowing I could say "actually, can we just wait a second?" or "can we just stop for a bit?" Very straightforward! And it felt like something I couldn't say because I felt stupid/I thought they'd think I was a nutter. But when I actually did it the first time - all the touching had got me quite triggered and I was aware I wasn't very grounded and I just kind of gently put my hand out and said "can you just give me a second before you do that?" - and the consultant was really lovely about it and then took everything very slow and kept checking in with me.

I get not wanting to say because it feels like we're being silly/we're looking like weirdos. But I don't think that's what they think at all. And I think it helps us and them if we flag something beforehand or as soon as we start getting distressed.

But - you did it! It's done, you're starting to feel back to normal, this was really good going.

If you feel able and think it might help, maybe try jotting down a few points about today's experience. What helped? What didn't? What - if anything - freaked you out? Was there a particular trigger? If so, can you think of anything that might have helped that you could have done before or during (or even after) that time? Just a few quick points that you can refer to again next time. And don't forget to include "I did it!"

How are you feeling now? Hope you've got an easy afternoon ahead - take it easy, lots of self-care, a chance to get your anxiety down and get back in your body.

 

[Fadeaway]

Just now saw this myself, but very proud of you. I can totally related to that kind of fear. Mine stemmed from being pinned down in a medical situation too, so I totally get it. So good job for being so brave! :tup:

 

[Sandstone]

be as prepared as I can be.

I realise over and over that I am never prepared, because I never know in advance that anything will be a problem. I've known about this appointment for a fortnight, but eh first time I had a inkling it would be a problem was when I woke having dreamed my heart was beating impossiblt fast. I just never realise it. I suppose that is living in ANP, who is never bothered by anything and can't conceive of giving in to fear. It is only when EP finally bursts out that the fear is recognisable, and by then I'm into panic mode

it felt like something I couldn't say because I felt stupid/I thought they'd think I was a nutter.

That is always the problem. This time I did say could we start with the blood pressure because I was very afraid of it. I felt so stupid. She also mentioned my overdue smear I said that wouldn't be happening. She asked if that was a permanent decline, I said I had PTSD from rape and she came over all sympathetic.

I felt such a fraud

I still don't believe in it. I still don't think I have any right to be ill.

Hope you've got an easy afternoon ahead - take it easy, lots of self-care, a chance to get your anxiety down and get back in your body

I wish it was going to be easy. My Care Co-ordator is supposed to phone this afternoon, finally, to tell me what is happening and what has been the delay.

 

[lostforgottensoul]

If you feel trapped you can take it off.

Indeed, and I have. I have a very hard time with anything around my arms (more my wrists but its also arms in general) and my doctors dont know of my past.

I close my eyes and count my heart beat up (and if i hit 10 back down) but usually before i get far its over. It helps a lot as well as keeping in mind that its just velco, you can take it off (and i have).

 

[Ocean5]

Sandstone wish I was here earlier to support you.

At one point my blood pressure went so high up, the nurse would check her machine several times thinking it was mal-functioning. It went so high. Told me to relax, breath deep - then just pre-hypertension levels. Then I got home machine, and now I'm use to it.

 

[barefoot]

I relate to everything you're saying.

I realise over and over that I am never prepared, because I never know in advance that anything will be a problem.

Same here. So now I'm at a point where, if I need to go for a medical procedure or to see a consultant to be examined etc, I simply try to accept that this could be difficult/stressful/triggering and that there is likely to be an impact - even when I think I'm feeling ok about it. So it's about consciously focusing on it and mentally prepping for it in a proactive way, even if I don't feel I need to - it's simply now part of a routine for if I need to go to medical stuff. It's happened enough times now that I've though something would be fine and then it hasn't been and the fall out has been pretty bad. So, now I start from a point of: however I feel about it now, I will probably not feel great about it when it comes to it, so what can I do to help myself feel more comfortable/have a better outcome/reduce the impact. I'd start with the assumption that it will trigger you, then work back to see what you can put in place.

I did quite a bit of work with my therapist on it and ended up drawing up a bit of a checklist for myself. It includes things like:
- wear cosy socks to keep feet warm.
- wear layers of clothes and wear as many clothes as I can including things that I can sort of wrap around and place/drape over parts of my body so that I feel as covered as possible. Minimising the sense of feeling exposed is key for me.
- take something sugary with me (eg chocolate bar or a juice) so if I start going into shock/dissociating/getting panicky I can have that - apparently, sugar takes the edge of adrenalin.
- if appropriate, take a Valium beforehand. Probably not a good choice before a blood pressure check, I'm guessing :-)
- before I take any clothes off and lay on the examination table, ask the consultant/nurse if they can let me know where they're about to touch me before they actually touch me. This one was hard for me because I felt so stupid and thought that they'd think I was nuts. But it's made a huge difference to me. You don't have to tell them any more context unless you want to but this flags to them that they need to go easy/gently and communicate with you - and it also sends the message to keep touch minimal. I usually say something quite lightly like "I'm not very good with being touched - so can you let me know where you're about to touch me before you touch me, otherwise I'll get spooked and that won't be great!" None of them have ever looked at me like I'm a weirdo. They are always just very respectful of it and do as I ask and check in periodically to ask if I'm doing ok - and I get a sense that they try to get things done quickly so that I can get dressed and off the table asap.
- if I need to stop for a bit, tell them I need to stop for a bit (no explanation necessary unless I want to give one). I have done this. No one batted an eye lid. We took a break and I let them know when I was ready to continue.
- if the experience is horrendous and I need to leave, say I need to stop and that I will reschedule. Get up, get dressed, leave. Haven't had to do this yet. But it's reassuring to remind myself that it's a choice that is totally available to me if that's what I decide I need/want to do.

All these things are really about not being caught off guard (ie being prepared) and trying to do as many things as possible to make myself feel more comfortable, in control, empowered and that I have choices.

And I now run through the checklist every time, regardless of whether it's a consultant I've seen before, a procedure I've had before, something I'm not remotely worried about... I came a bit unstuck with a couple of things....I've had this done before, so I know what to expect, so I'll be fine. And also, I've seen this consultant before and it's a woman and she's lovely, so I won't feel embarrassed and exposed... Both those times ended in total panic then dissociation during the consultation and several days of fall out from being so badly triggered. I didn't prep. I didn't think I needed to. I got caught out. It was too much.

I felt such a fraud

I feel pathetic that something that is easy and straight forward for most people is so bloody terrifying and challenging for me. Having a check list feels ridiculous. I feel stupid. I still believe my "trauma" isn't that bad and that I am pathetic in my overreaction to certain things eg being touched eg medical scenarios.

My therapist has said so many times, can I simply accept that it just is. To not worry about a label (eg is what happened worthy of PTSD), to not compare/judge to make an intellectual decision about what constitutes bad enough, to not judge myself for having done it before so I should be able to do it now and be ok so I'm such an idiot if I can't... But to accept that the impact of the current triggering experience is "bad enough" to cause me very real distress, so that's all I need to know and anything I can do to reduce that level of distress for myself is worth doing - whether I think it's pathetic, ridiculous, unreasonable, weird or what...

I always find it annoying when she goes down this path....I think I generally sigh and roll my eyes... But I do know that, however stupid and pathetic I feel when I look at my checklist and put my cosy socks on and pack my chocolate ar before a medical appointment...it has really helped a number of times.

So....no judgement is needed about this. If there's something you can do that might help, do it...you don't need to feel worthy/deserving/reasonable. You just need to know that these medical things feel ugh! So why not do something to help the that.

Sorry - long ramble!

Hope the call goes well. Will you let us know?

 

[Sandstone]

He didn't phone.

 

[barefoot]

Ah...you know what...I really had a strong feeling that he wouldn't...
I'm really sorry that they've let you down again. You deserve so much more.

 

[Sandstone]

I phoned him. He said he was busy yesterday, but was planning to call today.

A transfer to the new locality has been agreed by managers, psychology, and provisionally by Care Co-ordinators. Waiting for agreement that if Crisis Care is needed it will still be provided by my locality Crisis Team, and for a decision on where assessment and treatment "if indicated" will take place. Apparently, despite a year of psychology treatment within their Trust, they still need to see if I'm suitable for it???? They have a report that goes into 7 pages of detail on the work we did, and confirms that I "engaged well in therapy and was motivated, and actively tried the home based tasks". I pointed out I had been assessed repeatedly by many people, and telling my story was always painful and often destructive.

Then they need to have meetings between the two localities to transfer paper documents and hand over information. I asked or a timescale, but he was absolutely no way he would be drawn, not even to say if nearer 1 or 6 months. I pointed out it had now been two full months since they had decided I needed the SCID_D, he agreed it had.

So I have to wait an unspecified time to be assessed, again, and then it is entirely possible they will decide they can't or won't treat me.

 

[Kailani]

Like I tell the kids; just gonna give your arm a little hug when taking Blood pressure. Treat yourself after! Anything u like as a reward!

 

[Neverthesame]

She also mentioned my overdue smear I said that wouldn't be happening. She asked if that was a permanent decline

Here's something to note. They asked about a procedure that you are uncomfortable with. You said no, they listened.

 

[Abstract]

I know someone else that has recently been going through this same runaround Sandstone. Hang in there if you can. Im sorry they are so useless.