So. Where should I begin? It’s been a few months since I last posted and it’s not for lack of having stuff going on to write about (had plenty of that!). It’s more a lack of energy. Battery low, that kinda thing. So this is going to be a chunky-ish post to make up for not posting for a while.
So I’ll start with something I don’t think I’ve ever talked about on here before, and that’s skin picking. Science name / medical term = dermatillomania. I have this. In my case, it’s an anxiety-type behaviour and by that I mean I only seem to do it when I’m really anxious about something or in a situation that is causing severe anxiety. It only affects my skin around my thumb and finger nails to around the first joint down (as shown in the photos) .
It’s not nice, I know, but it’s a compulsion and I’m not always able to stop myself from doing the picking, although I do not have a diagnosis of Obsessive Compulsive Disorder (OCD) , I think this is maybe a trait of OCD that I have. I’m saying this carefully because I am so aware of the stigma and discrimination that surrounds OCD and I really don’t want to add to it.
While I’m on the subject, then, a few myths about OCD to bust the stigma. Firstly, a REALLY common one – OCD is not just about having things super neat and organized (people can be messy too!) – it’s having obsessive unpleasant intrusive thoughts that the person can’t control, which cause feelings of anxiety, disgust or unease, added to repetitive checking, such as a fear of being burgled would lead to checking locks on doors and windows or something similar. And one mythbust more just while I’m here – the famous myth that everyone with OCD constantly has to wash their hands. Definitely a massively damaging stereotype and untrue – it is the truth for some, but not for absolutely everyone.
On to something else then. Related but different though, let’s talk about sensory overload. For me it’s a bit like, if you’ve heard the term “too peopley” or “peopled out,”, that pretty much sums it up. To expand on this, being around other people, being outside or just socially participating all gets too much. Every sound – radios, someone else talking, someone singing or humming quietly or loudly – it all gets unbearable and too much and I just start to get overwhelmed and “shut down” (noise cancelling headphones/earphones are SO HELPFUL for these times).
I think this has a lot to do with my personal ‘window of tolerance’. To be clear, everyone has one of these. I have (not diagnosed by a professional, but I self diagnosed as its a lot of energy chasing a diagnosis without help in the meantime) complex Post Traumatic Stress Disorder (cPTSD) – I am looking to be diagnosed though at some point in the next few years.
So what happens when you’ve been through trauma, or have mental illness or some kind of chronic illness or co-morbidity etc, is that your ‘window of tolerance’, which is, I suppose, the way to word this is, how much in the way of daily stress and.. well, life I guess that you can deal with until things start getting too much, and that can mean different things for each of us. Personally this means I am overloaded sensory wise, and just can’t deal with more than the basics (eat, sleep, work), and also become increasingly anxious, hypervigilant, a bit more irritable than is my standard mode, and I get flashes of real anger. Sometimes (and I am getting pretty good at stopping them rising to the surface now) they show when something just tips me over my limit.
So, life with cPTSD then. To be honest I don’t think I’ve really been too aware, up until the last couple of months, just how much it does affect me day to day.
Ordinarily, I just crack on with life, because after I had EMDR last year, a lot of the cPTSD symptoms I’d had that interfered with daily living just blurred into the background. Unfortunately, fairly recently in fact, a situation at my now former workplace became precariously similar to the original trauma that caused the cPTSD originally – a trigger event, to be blunt. Without going into loads of details, I felt suppressed, silenced, really quite frustrated, unchallenged in my workload, and stressed out because of a lack of communication and gaslighting.
I started to have a trauma response to the situation I found myself trapped in. I started becoming withdrawn, more irritable. My auditory hallucinations reappeared for the first time in a long time, I dissociated a LOT, my background hypervigilance (which I know I’ll have for the rest of my life) rocketed, and the number of anxiety attacks I’d been having went from barely any to having about 4 or 5 a week at work or just before starting work, and the familiar sensation of dread, the “oh fucking hell I’ve got to do this again” thing every morning.
I had to “hold fast” to just survive, you know…. Back to something familiar to some of you, survival mode. Living in survival mode is no barrel of fun I can say that much.
Using your energy just to ‘mask’ and appear okay, just to get through work, then completely crash at home…. It’s just not sustainable for a long period of time, and without whinging too much about my additional other medical conditions going on, I was pretty much empty. Exhausted emotionally, physically …spent. I would have gone, as in resigned, from there earlier, if the universal credit system wasn’t so broken. I saw myself almost going the same direction as I did in 2018, heading towards a breakdown. Living in survival mode, or “holding fast” was the only way I knew that I could stop myself from heading that way, in effect slamming the handbrake on. It’s not nice, or pretty, or easy – to be brutal and unfiltered here, it’s fucking horrid and compounded with the situation itself, made me so fatigued, and was physically displaying itself as symptoms.
By that I mean alongside dissociation, panic attacks, increased hypervigilance and high levels of anxiety, the stress was causing physical issues – I was extremely tired, my fibromyalgia was flaring up at a moderate level with joint and muscle pain, I was coming out in spots, comfort eating then having no appetite, tension headaches and the odd migraine, and my concentration and motivation were really poor. My skin picking was bad too. On top of that, rumination and depression were bothering me, with the odd fleeting moment of being really really flat and a bit passively suicidal, by that I mean I wiped the thought in an instant and the thought was not of harm but negative self talk about being a failure.
So stress can be powerful, in a horrific way. I’m just over a week out of there now and still getting over the after effects of responding to being exposed to a cPTSD trigger. Lucky that this time I knew what to do to survive, because of my past experience, I knew that I had survived worse and that I could come through it and it wouldn’t last forever. It didn’t make the situation any better, but it did make me feel a bit less shit when I remembered that.
Going outside on walks, despite my joints best efforts, has probably saved my life, and has definitely kept my head above water in the last year or so. Music has done a lot in that sense too and I’ve learned to appreciate it in a different way, as well as listening to stuff new to my ears which has been around for a while. As most of you appreciate by now, poetry and writing has got me out of quite a few holes with my mental illnesses so far in life, and whether some or any of that gets published mainstream, I’m not bothered, because when it came from my voice, my hand, it needed to be written and said to just release the emotions and some of what’s going on inside my head in a readable way. I do think, and I’m blowing my own trumpet here – I don’t like to do this usually, but if I don’t no-one else will!! – that at least a bit of it needs to be seen by a wider audience by way of publishing, just so anyone feeling like I was or similarly, knows that there’s hope out there, that they’re not alone.
Onto a slightly happier topic then, and I’ve now been writing poetry for over a year, not exactly sure how many now but it’s a lot 😂, and I’ve grown to really enjoy performing poetry. However, there’s still a problem, albeit smaller than before. A social anxiety sized problem. I’ve had it on a short leash for quite a while, but it’s been harder to keep it under my control during the pandemic and having to stay in a lot, and particularly since having to become mask exempt, due to migraines, I’ve found I’ve been more anxious, and with doing a lot of remote stuff on Zoom etc, my social anxiety manifests itself as ‘Zoomxiety’ . Avoiding anxiety provoking situations has never been the way to deal with it, it just inevitably makes the end result when I’m forced to deal with the situation so much worse. Exposure therapy is fantastic in that sense though. I find that a couple of minutes in, I come off the anxiety fuelled panic cloud and the adrenaline becomes beneficial for whatever I’m doing. Obviously there’s another issue with having mostly online and digital (same thing?) events and interactions for well over a year now , while it’s great for logistics in the sense that you literally need internet access, a phone or laptop to do this stuff and not have to plan an entire cross country trek, hell maybe even cross continent in some cases!, negotiating transport (public transport wanker here… chronic illness means I’ve not been able to drive) or casting lifts, timings, cashflow , sorting on the go food etc out… It’s now in the sense that it’s incredibly energy sapping , draining and really quite emotionally and sensory overwhelming for us all to be staring at each other on our screens multiple times a day/week… It burns you out. I’ve felt it, I’ve spoken to more than a handful of friends that have felt it too. Trouble is what’s even the solution long term? I’ve had a break for a few weeks and then only doing half the events and meetings that I was previously doing.. the essential energy expenditure really. It’s okay to just, stop. Burnout is not fun in any guise, I have been there before now and it’s crushing.
Other than all that, I’m alright. Just getting back to me, learning all the time about my various chronic physical and mental illnesses and how to live the best life I can with them. It is demoralising when tokenism comes into play and scraps get thrown my way because I have X illness or because I identify as disabled. I want to be seen for what I can do and given a fair shot, not a sympathy vote. Other than that, the voluntary stuff I do with Time to Change York is chugging along nicely, I feel privileged to work with some really skilled and passionate people if I’m honest, and producing some brilliant anti mental ill-health stigma work alongside it bringing out the best of each other. I’m working on stuff which will show me that I can do things outside my comfort zone, like presentations, hosting and that kind of thing, which I would really have never had any chance or even dared to think of before I got involved in this, and I was given a chance, someone trusted in what I could do and encouraged and appreciated what I was doing. It’s fucking magical that kind of thing, and I got a lot of confidence, and importantly, a lot of me, back.
And on that note, that’s all from me for now. Remember that we can’t save the world in one step 💙