Miscellaneous ramblings of NarcKiddo

[HannahOne]

It made me happy to hear how you navigated with T and how TeenNK was able to get their needs met. Adult NK was able to see the complexity, the nuance, support Teen NK, AND advocate for what was needed--and T responded. Skillfully done! This is the art, the dance.  

[sanmagic7]

well done, NK, and teen NK, for bringing those feelings out into the light w/ your T.  i think it was a very healthy thing to do, both therapy-wise and personally.  it showed what a healthy relationship is all about.  we can have our feelings, bring them out into the open, and allow the other person to hear them and respond in an adult manner.  excellent job!!!  love and hugs

[zen_racer]

That sounds like it was a good visit, NK.  I'm glad that both you and Teen NK got to have a good therapy visit.  Feeling much lighter also sounds nice.

[dollyvee]

Hi NK,

I'm sorry that t cancelled the session and wasn't available for you when you were hoping for her to be. I can understand that it must have felt so close to things in the past when your m would fail to be there for you when you needed her. I'm glad that you got a chance to discuss those things with her and were heard.

When I read about your family visit, my sense was one where she maybe just didn't care. At least not in the way that maybe a part of you is hoping for (for her to be that reasonable person - I've been there too), and you are actively engaging, trying to figure out her behaviour and being present, and she can't even be bothered to offer you breakfast. It could be punishment, but to me, that's getting sucked into the "what did I do dynamic" that I had to navigate my whole life. To me, if an adult was hurt by something I did and I had no idea, I would expect them to maybe sulk about it, but to then open the conversation and say, you know I was really hurt by x, not keep someone in a continual holding pattern or guessing game. I felt hurt for you I feel like I am so used to trying to read into behaviours of people who aren't really giving me anything in return.

Sending you support,
dolly

[NarcKiddo]

Things are difficult at the moment and I haven't felt like posting until now.

I'm in another round of health investigations. I'm pretty sure I posted about finding myself unable to walk without feeling wobbly. It seems lung-related. I've spent the last few months on a new inhaler trying to rehabilitate my walking but with zero improvement. Or rather, zero discernible improvement. It is possible that I can walk a few yards further before the wobbles set in, or maybe I can walk at 0.1 kph faster. In the gym I can monitor things precisely. I know my body can respond to exercise. I know I can pedal on the bike with much more power than I could four months ago. I also know that I cannot pedal faster or I will get wobbly.

So I sucked it up and got a referral to see a lung consultant. I knew I wanted a cardio pulmonary exercise test because I think that will give answers. If there even are answers. But I want to be tested when I am exerting myself because that is when I have problems. Of course he wanted to do all sorts of other tests first, to make sure I am structurally sound, rule out allergies and fungal infections and what have you. Do another full lung test to see what my current baseline is. Fine, fine. I was happy enough to go along with all of that, although we have limited insurance cover so it is costing us money. And costing me stress and clinic visits and I think I have already given all of the blood in my body to that hospital but they wanted more. Which my veins are now becoming reluctant to provide. Sigh.

And the consultant is very nice and friendly but I was not sure he was seeing me. I have had this so many times with lung medics. I don't fit neatly into any of their lung patient demographic groups. So I thought 'well, let him do the tests he wants, and then I will get pushy if I need to'. So the tests he wanted showed some permanent lung damage from pneumonia which was no surprise. A substantial but not drastic reduction in lung function. Nothing to explain my symptoms, though.

So he agrees the next step is the exercise test I wanted all along. He has some theories that I don't much like the sound of, but we'll see. The test will check heart as well as lungs which I am pleased about because although I don't *think* heart is the problem there is sufficient evidence from my gym sessions to justify that it could be. I think I can't exercise hard because my lungs won't allow it, but maybe I can't get a high heart rate because the heart won't allow it, never mind what the lungs are doing, or not doing.

But he was still not seeing me. 'Oh, I will send you to London for the test.' Well, no. Because as anyone who lives here knows, driving there is next to impossible and there is nowhere to park when you arrive. A taxi would cost a lot of money. So it means public transport. With lots of walking and lots of steps and having to go at the pace of the masses of people who use public transport because there are just too many of them.

I look the man in the eye and inform him, again, of the fact that I cannot walk. Part of my problem is that I look healthy and vigorous. I don't have a problem navigating short distances indoors. I can turn up to his clinic with a stick, but I look fine.

So he hears me and says he will refer me to a medic who works out of a hospital in a town we can drive to.

I go home and do my own research. That medic does not work privately. I would be waiting three years for the test on the NHS. If they even allowed me to have it.

And then the consultant finally sees me. My telephone rings on a Saturday, unknown number, and it is him! He has been looking through my notes to write his referral letter. He has noticed things in my medical history he had not appreciated before. He has looked into the records of other medics who saw me a couple of years ago. He has more questions for me. All on a Saturday!

And we discuss what I found out about the location of the exercise test and I tell him that I have had to accept London is the only place I can go for the test, and that I will make it work.

And I get past the uselessness of the consultant's secretary and I book my own exercise test at a clinic I know I can get to. And I look online for contact details for the secretary of the professor in London so I can tell her what I have done because the consultant's secretary has not told me what I need to know. And the professor in London emails me personally to say he is glad I booked the test, and it looks like it will all happen in a week or so. And I should finally have answers, if there are answers to be had.

All of this with a backdrop of the lung consultant only working on the day I have my therapy so my sessions have been mucked up a few times. And I have been battling a cold. My husband had it first and he breezed through it, as most people do. When I get a cold these days I am laid low with punishing fatigue. If I am lucky (as in this case) I don't get much in the way of obvious symptoms. I am glad that it has not moved heavily into my lungs and given me a cough, because that is actually dangerous for me, but of course it means I languish in bed looking decidedly un-ill.

The cold seems to be on the way out and I am confident I will be OK to do the exercise test.

I had been wondering why it is so extremely hard to access one of these tests and why there are so few places that do them. The cost is prohibitive, so that will be part of it. A gym friend and I came to the conclusion that maybe a lot of people who find they can't tolerate exercise just say 'hooray, I won't bother, then.'

So I'm tired and cheesed off and stressed, but managing not to dissociate when with the medics and have not been as generally dysregulated as has been known when dealing with medical stuff. That's good.

[sanmagic7]

well, NK, we'll take a yay!  for the good part at the end, but honestly, all the hoops we're made to jump thru when we already know what we need cuz we've been dealing with our bodies forever!  well done on staying present w/ the medics - i find that difficult to do after a while.  it just breaks my heart to know how much you've had to go thru in order to get what you knew you needed in the first place.  i hope the whole london trip goes smoothly, that you get the answers you need after all this, and there is something pos. to be done about it in the end.  all good wishes and healing vibes to you.   love and hugs

[Marcine]

Gosh NK, I feel for you having to go through such a saga, and I respect how well you have advocated for yourself throughout it all!

I hear the theme of not fitting their easily recognizable categories. Of you having to work excessively hard to get their attention through their limited self-referential assumptions of what an ill or healthy person looks like.

Do they know how to care for and support an athletic person such as yourself?

I hope the specialist takes excellent care of you and procures the data you need to move forward as you choose.

Sending love and support.

[HannahOne]

I noticed your absence here, NarcKiddo, and was glad to see you posted, although saddened to read of the struggle. And a bit outraged at how difficult, time-consuming, and stressful it is to access healthcare. And people do give up. I'm glad you are advocating for yourself!

It can feel like an EF when people don't SEE. Or don't put the pieces together, "Um, I can't walk..." You're using your strength on your own behalf to get through to the doctors so they see and hear and put the pieces together.  And, it's so much mental and physical effort when the whole issue is one is depleted!

I'm sorry you have a cold and hope it passes soon. And I hope they figure out and can help so you can exercise.