It’s quite dangerous putting my coat on these days! There is a hungry bear in my life. He tends to lurk in nearby cupboards, and he follows me around when I go out.
My body thinks there is a hungry bear out to get me. It acts as if I’m in a life or death situation quite a lot…. when I clean my teeth,… when I put my coat on…!?
Every time I go to do something, or if I get stressed or confused it floods my body with adrenaline, goes crazy for oxygen and shuts down my ‘unnecessary’ brain functions. I prefer to think of them as very necessary brain functions, but I don’t get to make the decision!
Hmmmm, I know – not particularly helpful as a day-to-day issue!
It’s even less helpful in situations that are stressful but really important. Even if I get a bit stressed or upset, my body goes into run-awaaaay-from-the-beeeaaar mode, and I effectively seem to go crashing through conversations missing all sorts of delicate data and replying only to the concepts, or bits of concepts, that I’ve grasped. Although, unsurprisingly, my responses are taken as if I’ve understood the whole and that I’m answering as such. So some really weird misunderstandings can ensue.
And I’ve only found this out from being told about it afterwards. And I still don’t get it unless someone patiently backtracks and explains what I’ve missed. And that would first require them understanding my stupidly weird health developments for them to be able to comprehend that I truly don’t understand what happened, which is unlikely… basically because they are stupidly-weird health developments and it’s taken me many months to get my head around them!
The hungry-bear-effect is the result of one more internal oddity courtesy of my faulty autonomic nervous system, (ANS).
I assume that hints and subtleties are useless with me these days, seeing as I have trouble piecing together what’s generally known as the ‘bleedin’ obvious’! Sometimes I’m on the ball, sometimes I’m thick as two planks. Sometimes I have to lie down before I pass out and/or throw up…..I’m full of variety!
I know, this is prime material for a cringe-some comedy, where honest misunderstandings lay waste to everything around the character being trailed by the metaphorical hungry bear, and without them ever finding out what on earth happened. It’s very confusing.
I’ve named the dastardly bear Bertram. He ended up with his name one day in a daft conversation that I had about how ridiculous this hungry-bear-effect is. I mean, really, cleaning my teeth? Woah, dangerous stuff, eh?
I do try to keep Bertram shut in with the coats as much as possible, but he does have a tendency to break out and follow me around.
Bertram got called up for stalking duty when I was prescribed an incorrect replacement asthma inhaler! My ANS said….
‘Oooh look, she’s still gasping for breath. I reckon she’s in trouble. I’d better make this gasping-for-air thing into the new default to help her out!’
So it basically got the wrong end of the stick… and then gleefully ran away with it. It’s really chuffed with itself, too! It thinks it’s sooo helpful. Like a happy but misinformed doggy-helper!
Seeing as my body thought Bertram actually existed, and that he was most probably going to try to eat me, it put me into ‘fight or flight’ mode, making sure of several things…
…That I had plenty of oxygen for my muscles to run or fight with, hence the over-breathing and occasional gasping.
…That my heart was pounding really fast to get the oxygen to the muscles.
…That my body was flooded with adrenaline to power the life-saving effort. (Even under severe long-term stress, in ‘normal’ bodies the adrenaline release is switched on and off coz the body gets damaged if it’s flooded with adrenaline for more than 2-3 minutes at a time). But, of course, my ANS is away with the fairies… so it switched it on to ‘permanent’ and then skipped cheerfully away to make sure that…
….only ‘necessary’ brain functions were running. Coz apparently all I needed to think about was where the teeth were and when to duck and roll. Which is tricky when someone’s trying to hold a serious conversation with you, and there’s no bear in sight.
When the adrenaline was permanent for many months, I would awake feeling reasonably okay, but even then my heart would already be pounding as if I’d been sprinting. And that was the calmest part of the day! I got used to conversations not making sense and I just assumed that there was some bit of information that hadn’t been mentioned that would’ve made sense of it all. I didn’t know it was all related and that I was actually missing stuff that would presumably have been quite accessible to my usual standard of brain. Not until nearly a year later when I got referred to a respiratory specialist.
Anything that I didn’t understand in the last couple of years is still an inscrutable conundrum. There’s no way I can backtrack and re-live conversations because I didn’t get all the information or concepts in the first place, so they’re just not there to re-live! So leaving me to my own devices to figure out what happened in a situation I didn’t understand, is an utterly pointless exercise. I’ll just go round and round the bits of info’ that I did grasp and never get any the wiser! Embarrassing, eh?!
When Bertram looms I feel like I’m not quite here. Concentrating is really hard. I can usually hear and understand each individual word said to me but I have trouble figuring out the overall meaning of the sentence. Now that I know what’s happening, I tend to back off from a serious conversation when I start getting Bertram symptoms. I also get a bit shaky, tremors in my hands. My face feels strange, kinda slack and taught at the same time. My heart pounds soooo fast. I get really nauseous. I feel all light-headed but the room doesn’t spin, it’s more like the world is spinning inside my head. It’s really hard to try and work around! But it’s become part of my daily life.
Originally, of course, I had no idea what was going on or that the high heart-rate and missing information were related. The losing the plot, weird facial muscles and shakes are rather similar to when I have low blood-sugar so, before I saw the specialist nurse, I was taking dextrose tablets to try to calm the symptoms. I figured I must’ve been reeeaally low coz the tablets weren’t working! Doh!
So now I coast along, hoping nothing is too important coz I’ll most likely miss it, or screw it up, if it is. I have lowered my expectations of my brain and feel that I can cope a bit better emotionally with what feels like the loss of my grey matter. I still push my brain when I can. I wrote the ‘What is CRPS?’ page as and when I felt more ‘with it’. I can do thinking on my own time coz it’s when I’m up to it, in total slow mo’, and I stop whenever my brain falls over. I have to come back to my writing again and again to make sure it makes sense. I wouldn’t dare do otherwise any more!
As I am no good at making sense of new concepts or information at high speed anymore, (well, normal speed, but it seems like reeaally high speed to me), the key is to let people know about the problem, hope they don’t try to talk to me about serious stuff without bearing it in mind, (hah, bearing, that Bertram gets everywhere!), and the rest of the time just keep things simple.
The little things in life make me smile, they can warm my heart and they can make me chuckle. But now everything else has to be simple as well! Unless I can work through it laboriously on my own time.
I am determined to still have my brain, even if it is on a time scale more similar to that of Douglas Adam’s renowned ‘Deep Thought’ computer brain. Ask me if I want a cuppa and the answer will be instant, but surprise me with a point of view or concept I hadn’t expected and prepare to see me puzzled and, once Bertram takes hold, distressed. Or worse, I’ll answer you, but it might not make a whole lot of sense if I’m only answering to the bits I almost grasped, and so it can lead you down a wrong path without me even knowing it. Very unhelpful and confusing to both parties.
So it’s probably better to give me aaaall the information that you can in sloooow mo’, making sure that I haven’t missed something really fundamental that changes my perception of everything. And then come back in a millennia, or two, when I’ve got my head around it and can answer the question you asked, rather than the question that my brain thought you asked!
Of course at the end of it I might still say “yes please, a cuppa would be lovely” and wonder why you look a bit bemused, but hey, my brain is more like a rollercoaster ride through fog these days. There are plenty of unexpected moments!