***TRIGGER WARNING***
This post will talk about mental illness, OCD and compulsive behaviour, and how it all affects our mental health. Please only read on if you feel strong enough. Alternatively, for help and support please visit the mental health and suicide prevention support lines page on this website.
***TRIGGER WARNING***
It’s 5am on the 29th December and, like many others, I’m currently existing in the confusing time of the annual Christmas gooch. You know what I mean, that limbo between Christmas and new year where you don’t know what day it is, calories no longer matter and drinking alcohol is socially acceptable within minutes of finishing your cornflakes.
I’ve used the gooch time I’ve had so far this year to reflect, and it’s not been an enjoyable reflection at all. Usually there’ll be some general grief contemplation, memories of loved ones that are gone will inevitably make me sad, then the funnier times that I thought were lost will pop up surprisingly and raise a smile…my partner listens to my stories and (I believe) has started to use his annual gooch time as a period to switch off from my ramblings.
Anyway, this year the reflection was existential. Not in a crisis kind of way, more in a ‘I’m not sure if I’ve got long left’ kinda way.
I watched the latest Netflix standup comedy special from Ricky gervais on Boxing Day. His controversial, sarcastic style of humour usually strikes the right chord with me, although sometimes he goes a bit far for my taste. Nonetheless, I wanted to watch his latest offering named ‘Armageddon’. He used the hour to talk about the various ways the end of life on earth might be coming. Nuclear war, pandemics, global warming, AI, he hit on everything, and it was during his talk on the ageing population that my interest was stabbed.
He reignited some factual memories I’d put in the vault about the use of antibiotics in modern medicine and how the human race is now living well past its normal expiry thanks to these medical advances. Critically he reminded me that man isn’t really designed to live much longer than 40 years.
Ok, so that’s my time passed. I turn 43 this year, and these facts hit home hard. HARD.
As I pondered my own expiration I thought about how poor my health has been in recent months and how, even on Christmas Day, I was on my arse because of chronic pain, acute insomnia and a raging heart problem. Mix all that together and you have a human living a half life, never leaving home and in constant pain – all symptoms that the health service is struggling to unpick. It makes my world really difficult. Every time a new problem is diagnosed, I get excited thinking it might be the start of the end, but solutions seem to be difficult to source. My glee at the thought of something actually happening has been quashed so many times that I’ve not only lost hope, I’ve stopped asking for help too. What’s the point of raising my dreams if nothing ever actually happens?
I know it’s hard to understand, but nearly 3 years of being passed from pillar to post and having my hope completely obliterated over and over again is something I can’t continue to endure…I’ve just had enough.
But that decision has the potential to be critical. Without help, my ventricular tachycardia is likely to get worse and, although heart failure isn’t a certainty, it’s certainly on the cards instead. My mobility will continue to reduce and eventually I’ll find myself unable to do the few simple tasks I have left. Worst of all, left unmanaged, I’m going to continue losing precious memories that I should have with my little family. No part of my decisions are taken lightly, but after to listening to Gervais, I did wonder what happens next.
On Christmas Day (and some of the days leading up to Christmas) I was so unwell I spent most of the time unable to mobilise. My pulse was racing, my blood pressure was unbearably low, i was sweating profusely and needed a fan and the window open for days just to try counterbalance the problem, I was weak and dizzy and spent the mornings in a state of total confusion. It was scary, and after the confusion had settled, I looked at Dr. Google (not something I recommend at all, but in the absence of answers and on Christmas Day, what else is left?). Alarmingly, I ticked every box for congestive heart failure, and my anxiety started to rise. The symptoms stayed nearly the whole day, and it was frightening.
By 4pm I’d passed out, exhausted and in pain, and didn’t wake up for over 16 hours.
When I’m so unwell that I miss a huge chunk of my daughter’s Christmas without giving my consent, I know something is wrong.
Mentally there is another huge impact. My anxiety of getting higher, which makes panic attacks a possibility. Thankfully one of the key symptoms I have (breathing difficulties) hasn’t happened when I’ve been unwell, so I’ve managed to keep them at bay more recently, but that doesn’t mean I’m feeling balanced or happy. Most of the time I’m miserable. I wonder how much easier life would be for my family if they didn’t have me holding them back and making life difficult. I self harm to control the anxiety and racing thoughts, but like any addict, the more I engage with the drug (harming) the more the effects are reduced and the less it has any positive benefit.
I have EUPD/BPD, which is incredibly difficult to manage even when life is going well. When the chips are down, my head will grab those chips and throw them even further into the fiery pits of hell. Some days I don’t want to exist. Some days I wish the world would swallow me up. Some days I want to sit in a dark pit and just be left alone.
As I say, I’m not feeling too happy.
So, as always with my posts, I tried to look at the solutions and find any potential positives within all this.
What’s that saying? Something like…
“Continuing to execute a plan that hasn’t worked repeatedly and expecting a different result is the definition of madness”
…Well I fall into this category. I’ve been approaching the same primary care contacts within the NHS for 2.5 years and I’ve only got worse, so I need to go elsewhere. I did some research, made some phone calls to charities about my symptoms, and found out there’s a centre of excellence for autonomic dysfunction in London. I managed to get a phone number, and I’m now waiting for a specialist to call me back. I’m hopeful that, because of my circumstances and age, they’ll offer some help or even a referral that could be useful. I’ve also spoken with the British heart foundation and got their advice. Again, I have someone calling me back.
I hate to be morbid, but i feel like a house of cards right now, and I’m genuinely scared almost every day. Listening to the language used by politicians during the Covid enquiry last year, I started to realised how little the system values the life of normal people like me. I’ve spent years trying to get better and trying to improve my life, to be a good citizen and help others even when I don’t feel great myself, but the civil service (and therefore the government controlling them) seems to have simply given up on many of us.
As I’ve written before, the onus is falling on charities and organisations to help out, and I can only thank goodness they exist. I’d be lost without their light at the end of the tunnel, and im obviously not alone.
Finally, whilw I recommend RGs latest stand up offering, it definitely comes with warnings. 1. The jokes are sometimes difficult to hear, even if they are just ‘jokes’, and some people could be offended. 2. Expect to spend some time afterwards thinking about ‘the end’ in various forms, and wondering how you can influence a more positive outcome in some way. 3. Expect to feel pretty futile after all this has been considered.
I’ll keep you posted with any progress I make and I’m going to use some of the extracts from my written journal to reveal some of the personal thoughts that come out of my pores when I’m mentally and physically unfit in the coming year. Hopefully my story might help someone else who’s struggling, and slowly we’ll all help each other back on our feet.
That’s all for now. Thanks for reading.
Creative Steph 