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!


Writing Challenge takes down health-blogger in just 7 days!

I’ve just hit that proverbial ‘wall’. I cannot continue to write a blog post every day, even for such a good cause as the WEGO Health Activist Writers’ Month Challenge! I am not just tired, not just fatigued, but exhausted to the point of zombification, (without the hankering for brains).


I did not know that it would hit me this way. I expected pain, migraines, general tiredness and brain-drain, but not this. I’ve been reduced to a pseudo-zombie state where I am so utterly exhausted that it takes indescribable effort to move a limb, move my head, or attempt to read a simple research abstract online. My eyes are open, the lids are not drooping too much, (although the insomnia can’t have helped matters), I am just so exhausted that I am struggling to function at all.

I am writing this after a relaxing bath, a small bag of chocolate buttons and an actual caffeinated tea. None of which have really helped, so I thought I’d write this before I keel over into loss-of-brain mode again!

I am not giving up. I will continue to keep note of the WEGO challenges and I will get there…eventually. It will just have to be a lot less intense. I don’t do giving up, so you can imagine the physical state that I have to be in to get to the stage of writing this! To have to compromise the underlying rules of ‘every day for 30 days’, is a big deal for me. But there is no way I can keep this pace up. Besides, my lovely blog followers must be getting tired out with all this reading! 😉

I’ve got a cuppla posts almost ready to roll, so it’ll look like I’m still on form for a couple of days, but after that it’ll settle down to a more sensible pace again. My body has said ‘no’ and said it so severely that, even with my level of determination, I cannot over-rule this one!

Not only am I blogging like a woman possessed, but I also have the research project to prep’ – I should be multi-tasking at the moment and haven’t been able to do so. I always give myself too much to do in the sparse amount of do-stuff time I have each day. But it’s one thing to feel useful, and quite another to run myself into the ground! I frustratingly must take heed and make a change. Perhaps it is fortunate that I am in no fit state to kick up much of a fuss about it.

Blog-Post-Every-Day-Challenge Service is being suspended, and Normal Service is being resumed!

Lots of love from your determined dyssie,  x

What superpower would I choose?

Hang on, what am I thinking? After all, I am ….dahn-da-da-daaaaah…..Gnomes Bane…..!

My superpowers include (nearly) endless patience, powers of remaining upright using messages from my Tai-Chi-honed leg muscles (when my head tells me that I should be falling over), very high levels of pain tolerance, and an almost unshakeable determination to keep going no…matter…what….(gritted teeth)!

Gnomes Bane (chortle)

What? They’re not actually superpowers?

Okay, okay. Let me think. Er, we-eeell,…. I do have a mutant extra set of wisdom teeth! (Not all of which have yet completed their attempts to push their way through the other teeth that are sat right in their way). I don’t know what extra wisdom teeth would enable me to do if I was an X-Man, (er, X-Woman? X-Person?), though. I’m not currently aware of any super-wisdom effects. Although I am still fighting to think and write through bemusing brain fog, so…maybe?! 😉

So, if I could have a ‘proper’ superhero power, what would I have? I can’t help but automatically opt for the self-healing one out of sheer necessity, really. But that’s so disappointing because it feels like I’ve had my superpower choice taken away from me. Everyone else would be wishing for an actual superpower and I would be wishing for something to enable me to function, which has the devastating (though arguable) side effect of also giving me life beyond all the people that I love. I don’t think that even the power of self-healing cuts the mustard in that case. Maybe all of us spoonies could wish ourselves well, and then spend our newly extended lives hanging out together and getting wise? (‘cept, of course, I’d have a headstart on that one, what with my mutant teeth and all)!

If I could have completely free rein, I think I’d go for telekinesis. That covers loads of superpowers in one. I wouldn’t just be able to move metal, or water, or rocks. I could manipulate any material….. Just think how handy that would be if I’ve locked myself out. I could just make the lock open. I could carry the shopping with ease. I could wash the dishes from a distance whilst I put my legs up to rest. Hell, I could float myself about between physio’s and save myself the legs pain. I could even float myself about whilst I’m horizontal so that I don’t have the near-faints! (I love the mental image that conjures up)! 😀

No longer would I be flagged as a lone, disabled woman if I have to phone for car breakdown service. Wheel needs changing? No problem….(screws up face and points a claw-shaped hand in the right direction)….there…sorted. And off I trundle. Wait a minute….I wouldn’t neeeed a car!

Yep, telekinesis would be cool. I wouldn’t be ‘normal’ as such. But I could potter round doing normal things, albeit in very unusual ways. The locals would have to get used to me floating horizontally round the supermarket. But seeing as I could be so helpful to them, perhaps they wouldn’t mind too much! And if they’re all busy checking the saleable goods by looking through the packaging, being part crocodile, and bursting into flames, I don’t think anyone would notice me floating surreptitiously by with a little smile upon my face, anyway.

I’ll get the cape ironed. I like this idea!


This Too Shall Pass

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.” – Frank Herbert, Dune

I grew up knowing Frank’s Herbert’s quote. But it never became truly meaningful on a personal level until I became disabled. Not for the disability aspect, but for the continuous high pain levels and total lack of information about what was going on. To feel so much unbearable pain and find that even doctors could not understand what was going on, that causes distress, it causes fear. Fear of this being forever. Fear of there being no end.

But Frank Herbert also used the well-known adage ‘This too shall pass’. And so it does. Although sometimes I just allow the time to pass through me and beyond. Just for a while. So that I can run on neutral for a short time, to get me through the worst moments. We can’t do so for long, and it doesn’t fix the problem at hand. But if we can switch off for a few hours here and there, or sometimes just for a moment, it is helpful to give our minds and bodies a rest from all that adrenaline and tension.

My well-read copy of ‘Dune’

We cannot sidestep our fears, they will lurk and lurk. Nothing is achieved by worrying, but sometimes we just cannot avoid it. And, as tough as it is to do so, training our minds to step away from the worrying is so very important. Facing our fears and working through them can boot those worries into something we know. That we’ve already dealt with. So their reappearance is familiar because we’ve already taught them a lesson before and we know we can do it again! Yes, they rear their ugly heads from time to time, but we know them, we’ve already worked through the fear, and we made it to the other side. Otherwise we might have missed out on life. On moments that can be glorious. A moment in the sunshine. A message from a friend. A really good cup of tea!

I have found ways which work for me. I am the queen of distraction techniques that work for me! We each know ourselves best, and I’ve got really good at turning my brain round to look at something else. Not to ignore the real issues, but because I’ve already turned them over every which way, I know them as well as I know myself. So I just do not need to spend time watching the sad re-run! The best techniques are the ones that make me feel empowered, useful or creative. So I research information on my conditions to better understand them, (and to better explain it to the doctors, of course!), and I tell other people what I’ve found and write this blog just in case anyone out there finds it useful/amusing/distracting, too!

Nowadays, the bad times are when new negative information throws me into a phase of assimilation to try to regain my, already hard-won, equilibrium. If the circumstances are severe enough to outweigh my coping resources, then I will falter just like anyone else. That’s when I resort to really immersive but utterly unproductive distraction! It takes something really emotionally traumatic for me to have to resort to this, so it’s a very rare event. But when necessary, I do this so that I can break down the overall fear into more sizeable chunks, otherwise I just can’t think straight as my thoughts tend to spiral round in an endless circular fashion.

My ultimate survival tactics!


During one of these times I ‘discovered’ my boyfriend’s Playstation! It was the only thing that helped to shout over the worst of the pain and distress because it commanded my immediate and continuous attention. Yes, my real world was falling apart, but that dude with the big gun was trying to kill me and I needed somewhere good to hide and to find some more ammo’! Desperate times call for desperate measures, and so I became an avid gamer for a few months. I broke down the task of facing my fears into little chunks. And I came through it rather like an over-emotional plane in really scary turbulence, but I did come out the other side! The events that caused me such pain still rear their heads on a daily basis, but I know them, I have already faced them. They are my sadness. But I do remain.

After this time has passed and my brain has stopped the emotional uber-chemicals phase, I can step back from the situation a little. Employ my academic tendencies to assess in a less emotional manner, and then decide what to do next. After the fear has gone, there really is just me. Only I remain. And it’s my life, my body. Also my physical pain, my own disrupting symptoms, and only I can deal with them. There is no point in waiting for others to help me. I haven’t met a doctor, yet, who is trained to treat my dysautonomia. So I have to pick myself up, dust myself down and continue to find ways to help myself.

We all have our bumpy roads to travel. And no-one can be strong all of the time. But it can sometimes be surprising just how strong we can be when the circumstances demand it. We should give ourselves more credit.

The ‘me’ that remains after the fear has passed is always stronger.


Health Time Capsule

WEGO Health Activist Writers Month Challenge: Day 1

Ooooh, what to put in a time capsule? If an intrigued archaeologist, (or maybe some random site manager overseeing some building work), stumbled across my capsule on a dig in 2112, then I would need to wrap up the whole 2012 Dysautonomia ‘experience’ for them in a few small items.

I can’t assume that some retro-geek would be on hand to access the information left on an external hard-drive or CD. The information would almost definitely have corrupted by then, anyway. So I’m going with good old fashioned writing with a pen. And a really good water-tight seal!

I’d include my ‘What is…?’ pages from my blog, so they could see my understanding of CRPS and Dysautonomia at the time that I was alive. Back in the day! (‘Born in the 1970’s? That’s over a millennia ago! Cor.’)

And perhaps a couple of diary-style entries of what my days were like. The symptoms I experienced, which were not reduced because most doctors lack training in this area of dysfunction. The severity of symptoms experienced, owing to meds not being prescribed, despite the meds existence at the time. How silly it will seem to future generations!

I’d want to include some personal stuff, to make it more real and individual. Perhaps my medical bracelet, which I’m currently in the process of creating. With it’s engraved legend, “Autonomic Dysfunction. CRPS. No PCN. See wallet.” People might marvel at the thought of medical information not being readily available in case of accidents. And on it are my little bracelet charms. I wonder if they’ll understand the reason for having a spoon charm?!

The tag that will become part of my bracelet

And then there’s the things that make me who I am. Not just my condition. Maybe a little list of my achievements, that’ll show what kind of things count as ‘achievements’ to someone with these symptoms. Like managing to water the garden, and then being chuffed that I remembered the lid for my coffee cup so that I actually got coffee into my mouth instead of tremoring it all over the unappreciating lavender bush!

And maybe even what I managed to achieve academically. I may be disabled, but I have a brain… I can be useful. Kinda. Eventually. Given an unspecified amount of time, tea and hot water bottles!

But also the really personal stuff. A picture of my boyfriend, who is there for me through thick and thin and who knows almost as much about my condition as I do! (‘Look at his hair, Mum! Did people really used to go around looking like that?’). (‘What’s that on his top?’ ‘What’s ‘Metallica’ mean, Mum?’). Also some of the pictures and messages that my friends have sent that mean the world to me, and they show an extra dimension to my life and loves. The people I love are the people that keep me going. Their love, consideration, comments, jokes and willingness to embrace my silliness is like fuel for my soul. So the 2112 capsule riflers have definitely got to know about these people. And they also need to know that most of the contact was through the internet because these conditions result in isolation. Back in the day. When the internet was accessed manually with keyboards!

I wouldn’t be surprised if the 2112 local news report would be a chuckly one at the end of the 3D hologramatic programme. The time span would be so great that empathising would be quite difficult. ‘Most doctors were unaware of how to treat these conditions, there were medications available that were never employed because the doctors just weren’t trained in this area.’ ‘Of course, that was before stem cell treatments became the norm.’ ‘Nowadays, everyone knows about the dangers of using ice. And people are given lots of vitamin C after injuries and surgeries to avoid developing CRPS in the first place. If a small number of people actually do develop it, there’s always stem cell treatment to fix it before it becomes permanent.’ ‘These days we can’t imagine what it would be like to suffer daily from something so simple.’ ‘It must’ve been a hard life’ ‘Aw’. Poor us!

Ah bless. The future people have it good! 🙂

But maybe with a bit more blogging, a bit more getting info’ out to doctors, and bit more awareness generally, just maybe, we could bring that future a little closer, x