Conversations in the Outernet

I don’t really get the opportunity to see real 3D people in the ‘Outernet’. (Or ‘real life’ as most people probably know it)! I get the opportunity to talk to my gorgeous, beautiful friends thanks to the magical power of ‘being online’.

In the ‘real’ world I mostly just see my boyfriend, and our conversations usually involve:

(a) Me wittering on about what I’ve done today and what new information I’ve found out about my condition. Which results in his politely nodding and saying “mmm”, even though he doesn’t understand what on earth I’m on about coz I’ve gone into enthusiastic ‘expert patient’ mode! (Usually when he’s only just got home from work, too. He’s very good to me)!

(b) What we want to watch on TV when we finally get to chill out together…Me: “I don’t mind, babe, whatever you like”, Magic Dude: “I always choose. What would you like to watch?”, Me: “Oh, I don’t know. My brain’s not working now anyway, so just watch whatever you like!”. (I don’t intend to be exasperatingly indecisive)!

(c) Something so utterly random and completely made-up silliness that I laugh out loud but have no idea what we talked about afterwards because it was that random!

Or (d) practical planning of what we do when, what we’re going to have for dinner, how much physio’ time I have left to do anything in, and so on, right up to the end of the day when he says: “You look really tired. Bed?”, and I can’t help but nod in exhausted agreement! After all, I look and feel really tired every day!

Other than that I do occasionally have the good fortune to have a visitor pop in for tea, but mostly I see two groups of people: My Tai Chi group, and a lot of medical practitioners. There’s not much time for talking before and after Tai Chi, we’ve all got conditions we’re working around and so none of us can afford to loiter. But seeing medical practitioners is full of conversation. With me doing the explaining and them either not getting it, or them explaining to me what they do know to try to figure out if they can understand what is going on.

If only an apple a day made the doctor understand!

My most significant recent conversation like this was with the cardiologist who, as you’ll know if you saw my post the other day, basically presented me with the options of living life whilst permanently nearly fainting or… getting a pacemaker, (which would only help with some of the symptoms, anyway). This resulted in me hanging in there through the appointment, and then blubbing in the disabled loo before driving home. Sometimes it’s just a head and brick wall scenario!

Well, some good has come out of that conversation after all… At my request, I have been posted a copy of the cardiologist’s report that he had already sent to my doctor. And I have found that, for the first time, I actually have ‘autonomic dysfunction’ in writing. It has only been verbal for the past two years and that has made it difficult when talking to uninformed doctors who have so little knowledge about this area that they go back to square one and start doubting the original issues. *sigh* So this letter is a wonderful thing to receive as a result of a very important conversation.

I shall be scanning the letter into my computer and saving a copy on my hard-drive. It’s that important!

I showed the letter to the specialist respiratory physiotherapist to give her the update. And she said….”Oh, he’s only a GPSI..?” You what, now? I didn’t clock that bit! Everyone has been referring to him as ‘the cardiologist’, so I never thought any different, but it turns out that he is simply a ‘General Practioner with Special Interest’ in cardiology. Ahhh-haaaaaa, it all makes sense, now. No wonder he was interested and somewhat informed in my esoteric area of unwellness, and yet not actually trained in-depth to know how to actually treat the oddness. Okay. That makes more sense. But why send a patient with such a rare condition to a general doctor with no experience in treating it? It’s a mystery!

Conversations are great for the heart, for the soul, for creating an understanding and exchanging meanings, (assuming you’re not in a brain fog state at the time, of course!), but sometimes, just sometimes it’s the black and white type that does it.

Hooray for the ‘autonomic dysfunction’ in writing. I am so grateful that he went to the effort to do that.

And oh-ho, not actually a cardiologist. That explains why he had no other options to offer me.

Next on the to-do list: complete my summary of symptoms and quantifying the daily levels in the hope that my doctor understands the severity….then ask to see someone who actually knows how to treat this!

Ah, my work is never done!


2 thoughts on “Conversations in the Outernet

  1. Good lord, that does explain a few things!

    Ever so glad you got that in writing. Soooo important. And I have all my medical records on my hard drive, so bravo for scanning it in! Tedious, but always worth it. I can no longer find bits of paper, but I can always enter a doctor’s name into a search box. I devised a file-naming scheme that includes date, doc name, and key issue, so there are several search options. Being me, I wrote a file that explained to me exactly how to name files from the physio, physician, consultants, etc, so as not to confuse myself further… Whatever it takes.

    Keep slugging away. You’ll do it.

    • Thanks hon’, I’m nearly there with the info’, (still haven’t got my respiratory notes so I may go to the doc’ without them for now). My aim is to get referred to a specialist in autonomic dysfunction who has a cardio’ and neuro’ background, he’s in London…waaaay out of my area, but apparently there are funds set aside for cases like me, so it’s just convincing my doctor that this is necessary. I can’t carry on permanently near-fainting with no let-up without at least seeing someone about it!

      I love your level of organisation. I taught myself how to create a basic Access database years ago, but can’t remember it anymore! It’s becoming nigh on impossible to search through my hoards of research papers so perhaps I should get creating! I also need to get into the loft to dig out my old calendars to create a more coherent timeline. No rest for the, er, CRPSers!

      Love from me, x

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