World Environment Day and Photo Challenge for CRPS Awareness, Day 05

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 05 – A picture of something you wish you could change

I wanted to post about the way society tends to misrepresent disability, but I could not do any drawing today, so I shall come back to that one later. Meanwhile, on a personal note, I wish I could change my high level of pain and the big impact of feeling faint most of time! Ahhh, what it is to dream, eh?!

Pain and near-fainty, for blog

On the plus side…. today is World Environment Day, and so we now have two hardy fuschias potted up in the small space outside the house. When ill-health is rife I prefer to look for the beautiful things, and having flowering plants outside the house makes a real difference to my emotions on returning home.

Fuscia

It will be a flowering plant eventually, honest!

x

Advertisements

Experiencing cognitive change

Trying to make sense of the cognitive decline remains one of the most terrifying aspects of my recent experience.

Not being able to follow a conversation, pick up on a context, remember really obvious words or spell words that I use really regularly is scary in a way that the physical pain levels, nausea and even the permanent near-fainting, never are. Losing our brains is often what we humans say we could never face. Conversations about ‘if I lose my marbles when I get old’ crop up from time to time in most families. And we all see it as a distant possibility towards the end of our lives. It becomes a more real possibility the older we get, as does everything associated with age and a naturally deteriorating body. But how do you cope with losing important and relied-upon brain functions in a period of just over two years? When you’re still in your thirties? And which directly relates to your existing pain condition, but which no-one ever forewarned you about?

Um. I just don’t know. So I’m ploughing on in the hope that I’ll work it out!

 

Many people experience things like this, but we just don’t think of it as the norm’. It’s easy to feel separate from this possibility that has already happened to other people through various types of acquired and traumatic brain injury. How do they cope? How do any of us cope with such a change? It is a simple answer which one of my besties, who has far greater brain issues to deal with than I, has given: “What choice do we have?”

And that sums it up, really. We get on with it because what else is there to do? Falling apart emotionally happens but it’s a response, not a permanent solution or way-of-working. And my friend is truly an inspiration for getting on with things within the restrictions of her conditions.

There’s no point in wallowing. True enough. But there is a period of shock, confusion and fear followed by finding out ‘why’ and then, sometimes, a period of being peed off because couldn’t someone have warned you about this so that you could realise what was happening at the time? So that you don’t put your foot in important conversations and have no idea that anything untoward has occurred until you lose people from your life with no comprehension of why or what is going on. Worse still, when they stipulate exactly what meanings they’ve read into your conversations and behaviour, it still makes no sense, it makes things worse. It’s like they have been brainwashed into thinking you’re actually someone else with an opposite personality and moral core to who you really are and have always been. ‘Cept it turns out, during a slow and horrific period of realisation that takes months or even years, that actually it seems that the taken-forgranted brain was seriously malfunctioning, (owing to oxygen starvation and ‘fight or flight’ shut-down, amongst other things). I now know that anything that I thought I clearly remembered or understood should now just be regarded as merely my faulty brain’s view, (and as a pure fluke if I actually ever remember anything correctly), because I now know that my brain was not processing information coherently at aaaall. I was having conversations that were totally different to the actual conversations. My understandings of what conversations were about and how important they were turned out to be terrifyingly different from what the other people in the same conversations experienced. It’s like I’ve lost a couple of years of my life as well as some really precious people, and it’s because of this thing that was developing.

Now I’m trying to wake up and do something about it.

No-one can prepare us for this stuff, well, pretty much no-one. The tertiary level specialists that actually have a clue are spread really thinly and, as I’m finding out, getting referred to them is no easy journey. Just because you have autonomic dysfunction does not mean that you’ll get to find out that an autonomic dysfunction specialist even exists, let alone get referred to one. Partly owing to primary and secondary doctors not having a clue, and partly owing to the unhelpful presentation of the dysfunction which can too easily be misread as other simpler medical issues, (which quite rightly get refuted with each inappropriate secondary doctor you get sent to). Oh yes, and the fact that primary doctors in the UK now control their own pot of money which means that if they don’t understand your condition they’ll whinny and rear at your sensible request and run to the boss-with-the-money for a conference.

*sigh*

It’s a hard road for anyone with a rare and invisible illness. We explain what our condition is an awful lot. Even to our doctors. We become ‘expert patients’ and are used to using our good-brain-days to scour some more research papers to understand our own condition better, looking for ways in which we can help ourselves based on our own increased understanding of the esoteric neurological condition. We need to help ourselves because by the time we find out what’s happening and tell our doctor, they then whinny at us for a few more months before eventually referring to a secondary level specialist as a last resort who invariably says “If only you’d been referred to me sooner” and then explains how, if they’d seen you sooner, they could perhaps have done something, but that after all this time the faulty-ANS has made this new issue permanent and so all we can do is try to alleviate the symptoms if at all possible. It’s a repetitive cycle of unhelpfulness with a side order of deterioration.

We learn ways of dealing with all this. We develop amazing coping mechanisms. You know, depression is not something to be afraid or ashamed of, it is simply when the circumstances in your life outweigh your coping mechanisms. And that can happen even when you’ve become a coping superhero. We all have our bumpy rides. Some of us feel like that’s just the way life is these days! I’m good at dealing with bumpy. But finding the strength to research and then explain my own condition developments to doctors is really difficult on top of trying to function with the developments themselves. I am afraid of what is happening to me. I am afraid that belatedly getting referred to the correct specialist will be as detrimental as it has been every other time. I don’t know that would be the case but I am only human, and humans worry about stuff. Especially big stuff like not being able to function in normal conversations any more. I always said that since developing the chronic pain condition that I no longer take things for-granted. But it turned out that I forgot to really enjoy my brain whilst I still had it on top form.

I don’t know what the future holds, but I keep getting insightful views of it from the perspective of the types of deterioration that have been triggered in my body. I have a better idea than most about what the future holds because I have a condition and it gives me clues. And I don’t like the shape of it. I don’t know if I am strong enough. I am oh-so strong, I know that now, I have worked wonders with my levels of CRPS pain and it’s all down to my sheer determination coupled with my understanding of how the faulty-ANS was behaving. Basic understanding, but it did the trick. I got to a stage where I could live my life and be me. Lots of pains and restrictions, yes, but still me despite it all. But I don’t yet know how to do that with regards to losing my brain. What will be ‘me’ if/when it gets worse? What will be left will be my heart, love, soul, strength, but also my frustration at the confusion and difficulty at functioning in conversations and with processing more generally.

I now live with permanent brain fog and permanent continuous near-fainting. The degrees of severity vary, but there is a baseline beneath which neither ever goes and the rate of deterioration is truly frightening. I never experience clear-headedness any more. And I miss it.

 

I’m writing this first thing in the morning because, once I’ve woken up properly, I can think most clearly then. The moment I sit up in bed the heart starts going crazy. Sometimes it’s already beating a fast rhythm when I wake. But it always gets worse the moment I get up and start moving. And once it’s done that, it’s with me for the whole day. No escape, no relief, that’s it for the day. Fast heart rate + low blood pressure = fainty experience. Plenty of stuff can make it worse. And being able to think clearly enough to write is really rare these days. So I pick my moments. Magic Dude went off to work this morning and I propped myself up in bed with the laptop because I felt the urge to write this while my brain is functioning close to its best baseline. It’s taken me ’til lunchtime to write this.

I’ll find a way through it. I always do. But this has been a particularly tough ride. I want to keep my brain as functional as possible. Here’s hoping the doctor sees the sense in referring me to someone who actually has training and experience in treating this, then maybe I can eventually get some improvement. I’m quantifying symptoms, making pretty little graphs and collecting helpful research at the most basic level for the doctor to look at if he wants to understand it better. I’m being the best ‘expert patient’ that I can be under the circumstances. Now I’ve just got to hope that my doc’ can do his best doctoring under the circumstances, too!

x

Temporary cyborg and wearer of an invisible (purple) cape

I must be turning into my very own special version of old-young-person…. coz there I was a few weeks ago, sitting in my third cardiology appointment complete with thin hospital fleece, and whilst I was aware of my body temperature yo-yo-ing between shivering cold and a half-hearted attempt at self-combustion, my brain was otherwise occupied and volunteered a suggestion….. ‘oooh, this fleece would be really handy for covering the winter veg’’!

<facepalm>

Gardening thoughts? In a cardio’ appointment? Ah well, I do use distraction as a handy tool for coping with my conditions and their symptoms. I guess it must’ve become a seriously ingrained habit!

So yes, … I finally got to see a cardiologist, and my near-fainting issues all made the same sense to him as they did to me. Huzzah!

He even knew what CRPS was, and how it can sometimes result in general autonomic dysfunction. It’s such a relief to not have to explain my medical condition for once. That’s the trouble with having a comparatively rare condition, you usually end up training the doc’s, and they’re not always too happy about the knowledge switcheroo!

Yes, the near-fainting persists. As does the generally increased, but crazily variable heart-rate. This coupled with my existing autonomic dysfunction and my long list of resulting varied symptoms, suggests that it’s ‘just’ my ANS being spectacularly inappropriate! As usual!

I say ‘just’. Obviously it’s actually quite bad as there’s not much in the way of treatment. But, as I see it, it’s nice to hear normal things about my body these days! Normal size and shape of heart, for example. Always nice to find something that’s being what it should be. Even if its behaviour is wrong, courtesy of the weird instructions being sent because I have a neurological skew towards biological mayhem!

So I started to write this whilst wearing another ECG. My fourth home-ECG in the last few months. There were wires sprouting out all over the place. I probably looked like some kind of cyborg. And I probably should have practiced some robotic beepy noises for the occasion.  😉

(To be read in your best Dalek voice….) “Exteeerminaaaate!”?

The cardiologist’s plan was that the three-day ECG would (hopefully) show a degree of heart-rate variability which would back-up the theory that these symptoms are also because of my autonomic dysfunction. It would be easier to prove if we could record an arrhythmic heart moment, but they are random and I seem to be in a quiet phase on that front at the moment.

During those three days, though, my heart was being quite calm. Continuous light-headedness as usual, of course, but not any heart-rate variability that was obvious to me. Perhaps sitting at the laptop or having a calming Tai Chi lesson would not be that helpful in trying to demonstrate symptoms of heart-rate variability! I made sure I listened to Jared Leto’s dulcet tones on the drive home from Tai Chi, though, so surely listening to that voice would have raised the heart-rate a wee bit?! 😉

Oh?… Jared looks a bit surprised to be in a blog about dysautonomia!
(Image: free-extras.com)

It’s such a good feeling when I get to see a doctor who already knows about my condition. It’s a whole conversation that I just don’t have to have. When I visit my general physician, he doesn’t say much. He just sits and looks at me. He listens to what I say, but he doesn’t usually enlighten me about what he’s thinking at all.

It’s tricky not having a two-way conversation with your medical first point of contact. You never know where you are or what is really going on. My doc’ doesn’t know much about CRPS or dysautonomia simply because he’s not specialist trained.

Poor confused Doc’!

Neither am I of course, not officially. But after more than 12 years with CRPS I wasn’t surprised to be told by the specialist pain-management doc’ a few months ago that she was adding “expert patient” to my notes. It doesn’t seem to have made any difference, but it was a nice compliment! 🙂

As I write this now, I am no longer part-cyborg. And the ECG results came through as not showing enough heart-rate variability to officially pin the symptoms on the dys’. Not enough Jared Leto, I should think.

When I went to see the cardio’ again, (because I’m now getting near-faint symptoms after just ten minutes of activity and in fact all the symptoms are worsening at a very scary rate), I was sooo nervous! Not about the appointment, but about the likely unhelpful outcome.

I’ve been advised that there are no specialists in autonomic dysfunction, and that I’ll have to go and see other specialists about each symptom, starting with the most problematic. So… gastro-doc’ next then, as the continuous near-fainting and permanent nausea are the ones I’m fighting hardest to get something done about. The neurologist will have to be a close third because the varying loss of vocabulary and basic lack of comprehension generally is causing major problems at times. (Yes, I know I probably sound fine on here but I write this when I happen to be more able, and I re-read for errors about a zillion times before posting)!

By the way, he also advised that the array of other specialists that I should see, will also not know how to treat me! I ask you….what is the point? Send me to a specialist who does know, then. Surely that would be the next logical step? Bit of a waste of everyone’s time otherwise.

Strangely, he later added that there are no autonomic dysfunction specialists in this part of the country. So they do exist then? I am confused! If I lived somewhere else would I get treated?

I found out some more info’ about my ECG results. It turns out that there actually was heart-rate variability demonstrated. A normal heart-rate for an adult is 60-100 beats per minute, some online info’ refers to an average of about 72 beats per minute which probably varies with age. My average was consistently 70 across all three days, cool, eh? Um, not exactly! It may be a good average, but my heart-rates throughout each day were actually ranging wildly. It was pretty much the same each day, so as an example: on one day I ranged all over the shop from 34 to 154bpm! That’s not normal! Especially during quiet, chill-out days.

And this is where my glee at finding a specialist that knows about my condition ended. It turns out that there are people that know of, and people that actually know how! He knows of CRPS and some dys’ conditions like POTS. But He doesn’t have any experience in treating them. He does not know exactly why I am near-fainting all the time. I get the low heart-rate (vaso-vagal) near-fainting, but also the high heart-rate near-fainting that suggests something like the blood vessels not constricting in my legs, but he doesn’t really know. And he doesn’t appear to know how to find out, either. Which leaves me in a bit of a pickle, because you can’t treat something when you don’t know what it is you’re treating.

He’s asked for a fainting test, though. Although he says he doesn’t know if ‘they’ will consent to run the test on me as I haven’t actually passed out yet!

You don’t have to actually pass out to be diagnosed with POTS. I am puzzled as to why he thinks fainting is important in dysautonomia, but that near-fainting is not.

We already know that I have dysautonomia, albeit only through verbal discussion. I have no official diagnosis letter to wave at doctors. And a key diagnostic tool for dysautonomic stuff is this fainting test he’s referred me for. It’s known as the ‘tilt table test’. It basically entails monitoring the heart-rate while you’re at rest lying on a table, to which you are gently affixed(!), then the table is raised so that you’re nearly upright and the heart-rate continues to be monitored at intervals for a fairly long period, (I’ve been told that the appointments last about an hour).

The Tilt Table Test

Fair enough. A positive outcome from a tilt test would go on my notes and give future doc’s a medical starting point instead of going through the usual time-wasting rigmarole of doubt and confusion! So it could be helpful. Although bearing in mind that even 70% of POTS patients come up with a negative tilt table test, a negative outcome could actually be more detrimental when in the hands of the untrained and uninformed.

What I was not expecting was to be told that the reason for requesting a tilt test was to see whether I should have a pacemaker fitted……..*gulp*. Pacemaker???? At my age?? Egads!

This is his reasoning….he says he only knows of two treatments:

1)      Heart medications. Which affect the heart-rate, but as my heart rate varies so much… it can’t be medicated for. As soon as a med kicks in to solve one heart-rate problem, my heart will hippity-hop to a different pattern of behaviour, thus requiring different meds before the other ones have even worn off. So meds like beta-blockers and such like are not viable for me.

2)      Pacemaker! He says my ONLY option is therefore a pacemaker. It would be set to kick in if my heart-rate drops too low. But it would not solve any of the other problems and so would not be of much use overall. As a CRPS patient I need to avoid all invasive procedures unless absolutely necessary. And this would mean multiple surgeries as each pacemaker wears out over the years.

So that’s the choice that I’ve been given. No meds. Just…pacemaker…or continuous and worsening near-fainting.

He expected to wave me off to live my life despite continuously nearly fainting all day every day. Why did he not suspect that this may not be very appealing to me? Mysterious minds of specialists. ‘Can’t fix it, so it won’t get fixed, that’s just the way it is….byeeeee, have a nice life’. Really?? Yikes! I know of some meds that could usually be discussed at that point, but he doesn’t usually treat people like me so he just doesn’t know. In his view it’s simply pacemaker or nothing.

So is that it, then? There is no help?

I know that there isn’t much that can be done, but after doing lots of research and watching the Dysautonomia Information Network’s fabulously informative video about POTS, (a primary form of dysautonomia which has overlaps with my own dys’ symptoms), I was under the apparent misapprehension that some meds could at least be trialled with each patient to have a go at helping to reduce symptoms. Things like increasing sodium uptake to improve blood vessel constriction in the legs, or increasing serotonin in the brain to even out heart-rate, and so on. But the cardiologist is only specialist in his own area. So unless I can find someone out there by my own random and untrained searching of the health service, then I will only get to see specialist doctors who are not trained in the dys’ stuff.

Suffice to say that it was not a jolly experience that day. I was basically told that my worsening symptoms, that are preventing me from being on the planet and from doing-stuff/making-sense-of-stuff moooore and moooore of the time, are actually…. the New Me. 😦

My view of the world is rather like this a vast percentage of the time. My eyes don’t necessarily see it like this, it gets experienced like this.

So yes, I felt a few tears trickle down my face. Sometimes even the strongest and most determined cannot avoid a chink appearing in their armour once in a while! I kept talking, though. It’s not often I get the chance to see someone who has any clue at all about my condition, so I wasn’t going away without asking my questions first and being gracious and appreciative for his time. Despite the emotions wibbling on the inside!

Then I left the building circuitously, (via the disabled loo), and blew my nose as if I had a severe addiction to tissue and there was an international snot shortage that I was hastening to amend. There, sorted. No more snot shortage in the modern world! Job done.

Right. Deep breath. I had to drive home safely and get on with my day, and my life. Stuff to do, life to be lived. Check the bathroom mirror – how bad do I look after the torrents have passed?

Well, it had resulted in a comedy pink face, but my eyes looked all twinkly so maybe it’s a new look to consider?!

So with my imaginary (purple) cape swirling around me, I unlocked the door and stepped back out into the world to continue to be a version of me.

Okay, so the cardiologist wasn’t so helpful after all. So before I ask about a gastro-doc, and a neuro-dude, I’d better rethink the vascular issues. Hmmm…time to start searching for an Electrophysiologist, apparently!

Gnomes Bane. Daaahn-da-da-daaaaahn! My Clark Kent version of me was having a wobbly day. But that was that, no more crying. The answer was a nice cuppa. Isn’t it always? And maybe some commiseration chocolate. Oh, and this post, of course.

x

Newer post on autonomic tests (including TTT) here.