Two weeks today I will be having potentially life changing and life saving surgery. To have a nerve stimulator implanted in my head that will hopefully allow me to regain control over my pain and regain a life beyond basic existence.
The last 27 months have been true hell. I’ve been in excruciating pain every minute of every day from a condition that is so incredibly rare most doctors haven’t heard of it. In fact the only reason my condition was identified was because I paid a lot of dosh to see one of the leading headache specialists and neurologists in the UK. My condition started in 2015 and I had it mostly under control until I had the C vaccine, since then my neurologist has tried 8 different treatments which all failed and made my pain worse. My pain is now a minimum of 8/10 constantly, often higher. I was then incredibly fortunate that she knew to send me to one of only 3 surgeons in the UK that can perform this specific surgery. Who has dedicated his entire career to treating debilitating head pain through surgical intervention. That being said when I asked what my recovery post op would be like I was told ‘this specific surgery has been done so few times I can’t give an answer’. A surgery that is being audited due to its rare use. There’s no guarantee this surgery will work but I am both parts equally terrified and hopeful. Perhaps a new wiring loom and ECU is what I needed after all.
These last few years I’ve been a passenger watching my entire life disappear. The loss of my ability to work, to earn a living; the loss of my ability to train and therefore the loss of my strength and mobility – from powerlifting champion to disabled with a walking stick at 30; the loss of my independence and ability to care for myself and perform basic chores; the loss of friendships; the loss of my ability to socialise for more than a couple of hours a fortnight. Most devastatingly, the loss of my ability to regularly share walks with my dog. My life and world have become so small and my room has been my prison. My friend once wrote ‘the world was released from lockdown while Chloe’s has continued’. I’ve spent 27 months in near isolation from the world and the ones I love because of the unbearable pain I’ve been in.
But I have learned so much in this time that I wouldn’t have if life had continued as it was. I truly started to find myself through therapy. I’ve started to find my voice and how to use it. I’ve fought through suicidal intentions nearly everyday and found the strength within to not pursue them. I’ve started to learn to accept help and support from others, that it’s ok to not be the supportive strong one putting on a brave face for others. I’ve learned to say no. I’ve learned that life isn’t about objects and careers – it’s the small moments and memories outside of those; I’ve learned that I can feel joy and celebrate other peoples wins and successes while my life stagnates – it’s not a race or a competition, if you truly love someone then their wins are your wins.
I’ve spoken of loss and lessons, but mostly this time could not have been survived without my nearest and dearest. My mum for caring for me even when she’s exhausted or ill, for sometimes having to wash my hair or help me get up, walking Bella and doing everything else I can’t, for permanently putting up with my moody company. My dad and my sister for always coming to check in and offering support, reminding me they are there and that I am always at the front of their minds, for taking me out and reminding me of the things I love, giving me goals to work towards. My brother Ben and his family for arranging regular visits and allowing me to forget, even just for one day, what I’m going through. My friends – Hannah, Darcy, Laura – who have shown me nothing but patience and love, for making sure I remember how to laugh and feel joy and for always being my safe place. Of course there are others – Kira (& Ben!) for regularly calling from across the world and letting me forget everything else for a while, Ricky for giving me support, reminding me I am still me and helping buy me a recliner, Jordon for helping me immensely with my mental health. Mostly, all of these people for never ever making me feel like a burden or less-than, no matter what my mind tells me. And of course my therapist, Lee, who has guided me through this phase in my life and kept my head above water, for giving me the tools I need to survive and fight.
Of course my trusty side kick Bella, who in the last 18 months has had over £20,000 worth of surgery and treatment, and still hasn’t made that much fuss over the rapid change in our lives. She’s gracefully accepted life slowing down, and while she throws more tantrums they were never rare in the first place! Staying by my side 24/7 and making sure I laugh every day. For being so easy going that aside from walking I have been able to care for her every single day – giving me purpose while I have none.
What I am going through is incredibly unfair, cruel and soul destroying. But I feel for everything I’ve lost I have also gained. Of course I wish this never happened, anyone would, but I am loved and that is the greatest feeling in the world.
I realise this sounds a lot like a goodbye but I hope it is the start of a thank you and hello.