So it’s been a year since my last blog post. Shocking. I’d like to say it’s been so long because I was merrily continuing my life and didn’t have the need to spunk my illness fustrations all over the internet, but the reality is that I was actually having a 6-12 month long freak-out.
In the time since my last blog post I’ve racked up two surgeries, an emergency hospital re-admission, several severe bouts with systemic candida, a whole new set of medical problems as well as a New & Shiny mental health problem called Anxiety and probably a degree of post traumatic stress.
It all started with the planned tonsillectomy in January which was basically a how-to guide in breaking someone’s soul into a million pieces. The actual surgery and skull crushing 12/10 pain afterwards was one thing, but the post op infection and the admission trauma that ensued was a whole other thing. I was only in hospital for 24 hours but I can hands down say they were the worst 24 hours of my life for a myriad of reasons I’ll perhaps go into in another post.
The upshot of it was that A) it was my last ‘realistic’ hope at making significant improvements to my health longer term, and it didn’t work out as I’d hoped, so I basically lost my Hope. And those of you who are very sick will know, losing Hope is pretty much game over. B) I gained a paralysing fear of ever being admitted to hospital again. Which is a bummer as that’s quite likely to happen.
The general anxiety and trauma of the whole thing caused me to go into this desperate state where I pushed myself to my limits in the hope that I’d convince myself I was actually okay and I could still have a normal life. Except I couldn’t, and I started to crash. But the anxiety of getting worse pushed me so far into denial I was practically in Narnia. Cue more pushing, and more crashing.
It was like being inside a tornado, everything was swirling around in total chaos and I was desperately trying to find something, anything to hold onto. The problem with blind panic is that it just causes more stress, which then makes your illness worse, which causes you to panic more. It gets to the point where you have no idea if your illness is causing your anxiety or if your anxiety is causing your illness. I found this out first hand when I developed insanely severe acid reflux out of nowhere, which in hindsight I think was largely caused by stress and anxiety. I had always abrasively dismissed any notion that was dared suggested to me that my illness could have anything to do with mental health, and always stated that if anything, mental health issues were caused by a physical illness. (In my case they always were.) And here I was with this physical tight knot at the top of my stomach caused by months of fear, panic, anxiety and stress, causing actual real acid to start eating away at my oesphagus.
Cue a ton of PPIs (proton pump inhibitors to reduce stomach acid, nasty drugs, but I had no choice) and then realising it was slowly poisoning my liver. Cue MORE illness, nausea, extreme weight loss, bizarre pooping habits, mood swings so swingy that people around me had no idea if I’d be laughing or crying from one minute to the next. I was pretty convinced I was going to die, my BMI was 17.2 and people were throwing the word ‘cachexic’ around, which according to wikipedia, ‘is associated with poor outcomes’, ie death.
At this point I start panic-buying medication, supplements, ANYTHING that might help. I panic-pill-popped with little logic to what I was taking and with even less consistency. This further muddied the waters and I had absolutely no idea what was doing what.
I bet you’re wondering how this one is going to turn out, right? Am I writing this from beyond the grave or from a hospital bed? No. Ironically, no REALLY ironically, it was the realisation that I was heading for hospital and the paralyising fear of hospital that really started to turn things around for me. First of all, I asked for help. I got people involved. I specified exactly what I needed each person to do. I stopped panic-pill-popping, and stopped the PPI and found that I was miraculously a lot less ill without it – although I still needed things for reflux. I took a stand with all the things in my life that were causing stress and got rid of as much as I could. (Did I mention I had a special needs rescue dog for 3 months? Yeah, that’s a fun story, wait for that post!) I started forcing myself to eat more, even though I’d developed a food phobia thanks to years of gut problems. I swallowed some pride and borrowed the money to get back onto the one treatment that I knew would help as I’d already had a good track record on it. We decided to sell the house – another source of physical and emotional stress. I’m looking into a new lymey clinic, yes another one, because as much as I’m a kick ass armchair doctor, I do need someone to just go over the basics with me to make sure I’m not missing things. And to provide a bit more direction and clarity. And less panic, definitely less panic.
There isn’t a moral or a lesson in this. Fear got me into this shit, and fear is seemingly spurring me on to do the things I need to regain some control. There’s no higher purpose to that, it’s just sucky. It’s not even ironic in a fun Alanis Morisette way. What have I learned? That I still suck at self management. I’m not as emotionally stable as I liked to think I was, I’m actually better at taking selfies than I thought I was, and that PPIs are definitely Very Bad For You. (But yes, I’m still on them, it’s a work in progress.) Also, fear is the enemy, decisions based on fear are never a good idea, and Alanis Morisette’s song is actually really damn irritating.