What living with dysautonomia and EDS feels like – “The Poo Truck”
My wham bam health issues appeared in November 2014. However, looking back, before my ‘tsunami’ of symptoms hit, a slow trickle of odd symptoms had appeared. I’d been under quite a bit of stress from a job for a period of 6 months and I had a few odd, isolated bodily symptoms occur (which I can now recognise as the early warning signs). I had weird aches in my hands, I was thirstier than normal, I was wired and tired, I got the shakes when under pressure and I started getting weird nightmares on top of insomnia (Dennis the Menace flying spider kind of nightmares). I then experienced the ‘oh god I feel shit I must be unfit’ after pilates (come on?) and I had my first proper almighty so-called panic attack (an ambulance job). But many of these were simply explained away as stress related reactions.
Then I sealed my fate by visiting some hot springs for the day in late November 2014. For those that know me, I hate saunas (now know why), but I was excited to experience the hot springs and, because these were the real deal outdoor spas, I did find it easier to leave my body in longer than I normally would (effectively cooking myself and expanding my predisposition to baggy blood vessels apparently!). From there the unrelenting enslaught of panic/anxiety symptoms, dizziness and breathlessness really began!! It was like the body alarm system suddenly just went ‘OFF’ and would not stop. My gp and psychologist initially called it anxiety/panic disorder on account of work-related PTSD (from the ridiculous job I left 6 months prior) since that was what it looked like. I had never experienced anything quite like it. It was intolerable and I was pretty scared at how badly my body was acting out. However certain things, like the exercise intolerance and just not having experienced anything like this before, just didn’t add up and it took me a further 10 months (with much persistence on my part I might add) to get properly diagnosed.
I now know heat and my condition are not to be trifled with – basically, I spelled disaster for myself. I only realized the heat link 7 months after the hot springs incident when a friend took me to a spa for my birthday. There I was having a nice facial (you know supposed to be relaxing) when I realized I was slowly being cooked by the heated massage table (argh). Cue return of the intense panic waves and attacks that prior to that had been starting to calm down. I do not recommend doing such things a second time!!
Until this point, I had been unsuccessfully treated with an array of anti-anxiety drugs which made me so much worse. But with each disaster, slowly but surely I started to piece together what was happening. I found myself an autonomic specialist (who I refer to in here as Spesh) and 10 months after my ‘tsunami’ hit I was diagnosed with dysautonomia and as hyperadrenergic on account of joint hypermobility (a connective tissue disorder). Oh how now it all makes sense!
Since then, following the correct treatment protocol and modifying what I do and how I do it, some things have started to improve (the thirst and full on ‘panic attacks’ for example) but other things remain susceptible to being triggered and some things have worsened.
I still have lots of adrenaline issues if I prod things too much but now with lots of fatigue in between (from the yo-yoing blood pressure). My muscle aches and pains have seemingly appeared out of nowhere. I have also acquired a daily hangover and spate of headaches/migraines despite having cut out all alcohol and caffeine (how is that fair?).
It’s like the flood gates opened all at once and I don’t know at this point how much of the current will slow and dissipate. So hence the title of this post today….. somehow my body just decided to dump a massive poo truck on me and it really made me sit up and take notice!
The body is an amazing thing and is ultimately to be listened to. I know I’ve really tuned into mine. I manage my activity and my body so much more mindfully these days. All you can do is work with it and do your best to allow it to recuperate and hopefully to heal. Stay tuned. I am a work in progress.