It’s hard to believe it’s been an entire 1 year since I had my VNS device surgically implanted into my chest. And it’s even more mind-blowing to think about everything this tiny 4.5x3cm machine has done. The more time that passes, the more that I think about it, the more amazed I become. Every day I feel increasingly grateful for my VNS and, even for me, it’s hard to put it into words.
So in preparation for writing this blog, I’ve gone over the four previous VNS Updates I’ve written. It’s certainly been a bumpy journey; going from extreme anxiety and depression straight to the euphoria of only having one seizure at a time, only to fall right back down into the depths of gloom and clusters. But it’s the big picture that matters. And even if I’m still struggling at times, things are far better now than they were a year ago and that’s all down to VNS.
As I’ve been documenting throughout my journey, there’s not really much for me to report. I feel like everything I want to say has already been said. But I do have one thing to announce; just a month ago I woke up with a bitten lip. I only noticed when I brushed my teeth, so checked to see if my apple watch had picked anything up. And true to form, there it was. An orange line at around 8 AM suggesting I’d been awake at the time. I checked my heart rate and that too had spiked about then. So then I asked my dad how I looked when he came down to get ready. And he told me I’d been cocooned pretty low down in my duvet.
All these little details added together gave me enough evidence to conclude that I had indeed had a seizure and my VNS had prevented it from escalating. The device was working. Without it, that one minor seizure could have easily become a cluster of 10 major seizures, debilitating me for days. But instead, I was able to get up and get on as normal.
Knowing that this device is working the majority of the time, gives me solace on bad days. And even when I wake up drained and in pain, I’m aware that things could be far worse. Because I’ve been there.
The hell of 2019
I’ve never held back from discussing just how hard 2019 was for me. But I’ve also never really gone into much detail about the multiple traumas I faced or how it affected those around me. Just 18 months ago I wasn’t even sure I’d make it through the year. I mean, my epilepsy is described as being refractory for a reason, it’s stubborn, uncontrolled and uncompliant.
I do think going into more detail about some of the most traumatic incidents of last year would be beneficial for me at some point. But to give you one example, I went into Status Epilepticus whilst on holiday in Israel with my sisters and our two best friends. They had to phone the ambulance in order to bring me around and keep me alive. I know if I’d had my VNS and magnet at the time, the ordeal would’ve been far less traumatic for those with me. My youngest sister still struggles with anxiety over a year on. If she had felt more in control at the time it wouldn’t have been so hard for her to deal with.
In fact, the whole year would have been easier. But that’s why I got VNS and that’s also why accepting it was so hard for me at first. I had to admit that I was ill enough to face surgery, that this was, potentially, my final option. And luckily enough for me, the risk was worth it.
Life since surgery
2020 has been a rubbish year for everyone, but thanks to this device, I’ve been able to face this hell-of-a-world head-on. Face it without the fear of consistently being admitted to A&E during a pandemic. Starting to move forward with my life, even if it is from my bedroom. And I’ve been able to start rebuilding my confidence and independence.
As you can read in my first VNS blog, recovery was not easy for me. It came at both the worst and best possible time. It triggered a drastic drop in my mental stability but also made us aware of the issues I was having. And of course, we’re all now aware if I hadn’t had my surgery when I did, I’d probably still be on a waiting list now due to COVID. A huge amount of the gratitude my family and I feel is because I had my surgery when I did.
Even being the tech-savvy youth that I am, I’ve been amazed at just how much VNS can be altered. It really is a custom device. And although the initial increase was tough to deal with and I’m pretty certain we’ve still not found my perfect settings, this thing is working for me. I’ve gone from an average of 10 seizures a fortnight to just one a month! I never could have imagined this tiny thing would make such a difference in such a short amount of time.
Back in December, my nurse explained that the effectiveness of VNS is accumulative. Five months on I started realising that, if that was the case, being seizure-free really might be an option for me. It took just six months for this thing to start changing my life and my overall view on how my future may look.
What I didn’t expect
The first thing I wasn’t expecting was cluster control. I discussed this in my second update. I’ve not had more than one seizure at a time since before the summer (med brain means I can’t remember exactly when ??♀️) and when I consider that 20 months ago I was rushed into A&E due to 30, it’s pretty impressive.
However, VNS has also helped in other areas. I’ve mentioned my independence and confidence, and although I’m still mainly bound to the house due to the current circumstances, I’m now reaching out and responding to opportunities. I’m confident that when things return to ‘normal’ I will be well enough to attend meetings and even work. For the first time in over two years, I’m able to grab life by its horns and bolt forward towards whatever fate life has planned for me.
This point links in well to my mental health. Not being so concerned by seizures has given me the chance to approach and work on my other issues. Just two months ago, I finally came out of my two-year-long rut of depression. I began hearing music differently, feeling like I was living and not just alive. I still struggle as, just like I’ll always have epilepsy, I’ll always have autism and depression. That’ll never change, but I’m now able to deal with it.
All of this together has also helped me rebuild the relationships that my seizures were beginning to affect. My family is now happy, the majority of the time anyway. Everyone can now focus on themselves as they don’t have to constantly worry about me. And although I should never feel guilty, I always do. Knowing I’m no longer such a burden is a relief and just another thing I’m grateful for.
Gratitude is honestly the strongest emotion I feel when I think about my VNS. It’s so small yet has given me so much. My life will never be easy, but I now have the tools I need to fight all my battles. VNS hasn’t just changed my life but given me a new one. If I’d turned this opportunity down, there’s a chance I wouldn’t still be here today. Life is something to be truly grateful for, and I now understand that more than ever.
So if your doctor ever suggests VNS, go for it! It’s my no means an easy road, but I’d much rather be travelling along this path than the one I was one before.