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.
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!