Miscellaneous ramblings of NarcKiddo

[zen_racer]

NK, I'm sorry you're having a rough time.  It sounds like that AI research was a great thing to do.  It's always good to advocate for yourself when it comes to medical stuff.  I had to do that a lot when my gallbladder failed by going hyperkinetic. 

I appreciate the full honesty when describing your experiences with the inner children.  I especially resonate with having trouble being nurturing towards a younger me.  I think we all just did the best that we could with what we had at the time.

I hope Teenage NK starts to see you as caring and patient as I do soon.

[HannahOne]

I find teenagers to be a challenge too, NK, both inner teens, and outer ones, LOL! Building a relationship with yourself is important, and takes time. I try to remember I don't have to like all parts of me. Or my actual teenagers I live with My inner teenager is like an abused dog. I Can't walk up and pat her on the head. I have to sit quietly in the same space, not  making eye contact, and just wait for her to come to me, if she wants to. Anytime I try to be direct, it goes wrong. Kind of like talking to teens while driving in cars: less confrontational, more parallel. And remembering as you said that the inner teen was just a kid. It's easy to think of teens as little adults but their brains are not fully developed. They're just kids trying to make it.

[sanmagic7]

NK, that lung stuff sounds intense.  well done for learning what's going on with all of it and for knowing what' best for you to do to help your lungs work correctly again.  just a thought:  could you write out what you need to have done, keep it with you in case, as you mentioned, you get a flare-up that needs to be tended to by a doc, but you can't speak? 

i'm just getting into the little me's stuff, but it sounds like you're navigating the waters with your inner children and i agree that teens of any kind can be rough to deal with.  as someone mentioned, your kindness and caring will show thru and eventually all of you will do well together.  i have no doubt.  love and hugs

[NarcKiddo]

Thank you everyone for your kind, understanding and helpful comments, and for being here. San, that's a good idea. I have an online journal I can access on my phone and you can pin entries to the top so that would be a good way of keeping the vital information easily to hand. I've already got the AI information in there so pinning it is an easy job. I actually LOVE this particular online journal. It's called Day One and I'd recommend it to anyone. I pay for it so I can have different journals for different topics but the basic free one journal model is fine, too. It's what I started with.

My inner teenager is like an abused dog. I Can't walk up and pat her on the head. I have to sit quietly in the same space, not  making eye contact, and just wait for her to come to me, if she wants to. Anytime I try to be direct, it goes wrong

Thank you so much for this analogy, HannahOne. It is massively helpful. Particularly because, much as I can summon up bucketloads of compassion for a small child I can also summon up bucketloads of compassion for a dog. Likening the experience of Teenage NK to an abused dog is something I can really get on board with.

[Hope67]

 

[NarcKiddo]

I am so cheesed off with medics. Why is everything so difficult?

I'm doing pretty well with my exercise tolerance. AI has been really helpful in explaining my lung mechanics. My PT (weights coach) is very responsive and wants to learn new things so is really happy to come on this journey with me. My condition makes my responses to exercise somewhat non standard. My lungs have made my shoulder get angry when I deadlift. Really? Yes, really. He does not pooh pooh my theories, he helps me research, he gives invaluable support. I wouldn't be without him. I allowed this man to take me for walks when I was first recovering from pneumonia.

Anyway, I cannot get specialist help with physio on the NHS. I found a private clinic. I think I am doing well but wanted some reassurance from a professional in lung health that I am not missing anything. Explained the issues to the clinic boss, that I have a fitness background but currently can't walk for more than a couple of minutes even at a slow speed without feeling wobbly. I would like to regain that basic life skill. Was I planning to go on a hike? No, I just want to be able to walk down the road, preferably without sticks.

Physio comes to see me. I had met her before, in ICU. She was passing my bed, not assigned to me, but noticed I was breathing incorrectly through my hi flo oxygen tube. Corrected me. I was wildly grateful. Nobody until then had told me what I was supposed to be doing so I'd had to apply my knowledge of fitness and my own body to do what I thought was best.

She's gentle, she seems nice. Said she had been fully briefed by clinic boss. I showed her my lung function results and pointed out a few specifics. She got out a questionnaire and asked me questions. I scored 19. Out of what? I don't know. What did the score mean? No clue. I gleaned from the tenor of the questions that it was some sort of anxiety rating. I knew I would be scoring quite high on that until we got to the bit about my breathing issues making me feel scared. They don't. I treat them like I should treat emotions - gently and let them sort themselves out, which they mostly do. Panic does nothing. Anyway, before I could ask about my result she wanted to observe my breathing. I was keen to get on to the physical help, so let the questionnaire slide.

I was wearing a couple of T shirts. Did she want me to strip down to a vest so she could see better? No. OK.

The instructions were to close my eyes, breathe calmly and not think about my breathing. Ha ha ha. Who can do that with a physio staring at them, watching their every breath? So I did my best and did good, slow, deep, calm breathing.

Ah ha! You breathe through your chest not your diaphragm NK. Yes. I do. My diaphragm is compromised by my lung condition.

And, NK, you take in too much air! Lie back and I will show you what needs to be done. Let me ask you about stress levels. High? Oh, yes, high. I didn't confess to CPTSD exactly but I did tell her I've had stress reactions since early childhood.

Right, NK. You need to be relaxed. We will do a relaxation technique.

If there is anything that does not relax me it is relaxation techniques, by and large, I told her. I have tried many. Oh, this one will be fine. You don't have to clear your mind, you just need to relax muscles, in order. OK, whatever. Of all the techniques that is the one that works best for me.

So I have a guided relaxation. Then get taught how to breathe. My diaphragm works OK when lying at rest and it was instructive to know how little air one needs at rest. I behaved myself well and did what the lady asked. The appointment ended, there was no time for questions and she asked if I wanted to schedule another. No thanks, I said. I have plenty of breathing to be getting on with. I'll be in touch if I encounter problems or when I am ready to move on.

Off she went, no doubt pleased with her work. She'd spotted a breathing pattern disorder and showed her patient how to go about fixing it.

I did my research afterwards. AI reassured me that taking in too much air is not good and if I can sort that out then it will translate across into help with my movement. I have some symptoms that could be laid at the door of the disorder. There are many other doors they could also be laid at. AI also reassured me that I am not making up the effects of my lung mechanics and good quality restful breathing will not cure all ills.

So I've been a good little NK and done my exercises. I've also observed my breathing when at rest. I don't think I do take in too much air. I was doing deep breathing in order to do calm, managed breathing for the physio to observe. My lung mechanics mean that I MUST use my chest muscles to take in air. Diaphragm alone will not let me take a full, deep breath.

I also learned about the Hawthorne effect, where people alter their behaviour when being watched. In effect my breathing looked dysfunction partly (if not mostly) because she was watching. Do I have a breathing pattern disorder? Maybe. But maybe not. Still, her exercises will not harm me.

But her diagnosis sounds like an easy fix. And she did not even begin to address my actual concern - walking.

The clinic boss asked for feedback. I agonised over how best to reply. In the end I crafted a good email. I explained that none of my actual concerns were addressed. That I had expected the whole thing to be a bit more hands on. But she did not listen to my chest. She did not touch any of my muscles to see what condition they are in. She did not observe me when walking to see the effects of that. I said I am fine with the result of the appointment but as and when I want another one she should not expect me to be passive as I was. I know what I want help with and I will be making the specifics very clear.

I was discussing with my T today as to why I did not get more pushy at the appointment. I was conscious it was a first appointment. I did not want to question her clinical judgement or push her around on day 1. It all got away from me. I think my littles feared that if I pointed out I have done my research and I am the expert on me she might react like my M and find some kind of proof of why I am not, in fact, the expert on me and have no idea what I'm talking about. I felt like I did in hospital, where people were observing me according to some sort of algorithm of people with COPD and not actually seeing the patient in front of them.  I also realised, in talking it through with my T, that this physio has a very impressive background. BUT someone who has spent decades helping people in ICU has by definition not been helping people actively engage in fitness pursuits. I was the only person using resistance bands and doing squats at the end of my bed and I can assure you that was not while I was still in ICU! So, maybe she's not the right person for me anyway.

Waiting with interest to see what response I may get from the clinic boss.

Why is it all so difficult? And I had to pay a good whack of money for the pleasure of that physio appointment. It was totally not good value. I could have got 4 sessions with my PT for that. Sigh.

[HannahOne]

NK I read your post. You ARE the expert on you, and it IS difficult to deal with professionals who don't understand our disorder or medical condition. FWIW how you handled it makes total sense to me. Sometimes it's a bit of a no-win, and a process. The first appointment goes how it goes, and then they see the data of how their intervention did not, in fact, work... and they are more open. Sometimes they're also NOT more open and then you have to move on.

And yes, I pay out of pocket for dysautonomia specialists so when they don't listen and diagnose me with COPD and mild heart failure I'm like ok that's what the scans say but that's NOT THE PROBLEM, ARGH!!!

I'm really sorry. Your advocating for yourself and your understanding and research about your condition is invaluable. I hope the clinic boss takes in your feedback and maybe even gives you a refund. You deserve compassionate care from someone who, even if they don't understand your condition, can take in new information and integrate it to actually help you!