Month: September 2023

3 more ‘sleeps’ till my big day. What could be the start of the rest of my life. But sleep is not coming easy to me, hence the marks which I cannot remember the name for.

5 nights in a row I was waking around 3 and then unable to get to sleep again. I tried breathing, meditation and reading but sleep remained elusive. Wednesday I had therapy and that night I slept through.

I guess we had a bit of a break through, I’ve been having anxiety attacks and hyper focusing on everything else that I could control. It even came down to being rather anal about the placement of food on my plate – nothing touching and everything in an organised manner. No cucumber and pepper spread across my lettuce, all must be separate. Like I said – anal. I mean it’s something I’ve always done to an extent but it’s become extreme. I had to have control over everything else because I feel so unsafe not having control over things and this operation and its outcome are beyond anyone’s control.

I’ve felt intense fear and anxiety over this op. I feel so much pressure because its outcome means so much and can change so much. I had so many thoughts I couldn’t hear then, it was just noise in my head and this heavy feeling in my chest I couldn’t shift. And then I had therapy. Lee has a remarkable ability to get to the root of the issue. For me it was guilt. I had no idea how much guilt I felt but it was there and suddenly felt so raw. Guilt over feeling fear and anxiety when I asked for this, I fought for this. Guilt over why me, why do I deserve this operation. Why am I the one that gets the chance to be better. Why do I deserve the NHS to spend £30k on this operation for me?

I know you’re probably reading that and thinking it’s totally irrational. I agree they are, but they are a product of 30 years of conditioning. It’s hard to break all that shit overnight. I ended therapy feeling like I could take a deep breath for the first time in a while. The heaviness was much lighter.

Fast forward to last night – I woke at 2.30am. I eventually fell asleep again just before 7 but had a nightmare followed by sleep paralysis. Known as a sleep paralysis demon, something I’ve had on and off since I was very young. But last nights was a nightmare about post op complications. Specifically I was in the bath with my knees to my chest. Suddenly I started to tense up and then I couldn’t breathe, or move, or call for help. Full paralysis. Then I woke in the recovery post, unable to do all of the above still. Shitty stuff really.

Today I’m in agony and exhausted, yet at the same time I am very restless. My cup is empty and there is nothing that seems to be able to distract me enough.

On a positive I’ve managed to see all my loved ones this week, with just my grandma and sister to go tomorrow. It’s totally fucked me over but had been worth it. I also extended myself to my limits financially and bought Bella a new orthopaedic bed. She’s aging fast and her dementia is making her far more dramatic than normal over her achy joints. So she had fresh pyjamas and a fucking enormous bed so hopefully help her get the rest she deserves too. We can recover together.

Enjoy the photo of Bella for her first night in her new bed and thank you for reading my tales of panic and joy. I’ll probably be back before Monday, perhaps I’ll even share the amusing sharpie doodles my surgeon will no doubt do again!

We’ve been through a lot these last 27 months. ‘We’ being me, my friends and family and those few who read my blog. I guess if I’m being honest I’d hoped my blog would reach further and help more, but ultimately there was and is a remaining fear inside me that prevents me sharing it regularly to my personal social media platforms. I fear other’s opinions greatly, I always have. But I do wish to help others from my experiences – not just these last two years because they’re just a small part of my life. But I’ve shown resilience throughout my life in many ways.

But these last 27 months have by far been the hardest. I don’t know at what point things got easier, but they did. But there was a lot of resistance from me. Something that is evident in the many dark and scary thoughts I’ve shared here. The main catalyst to things becoming easier was that I had to be willing to let go of me; the me that I knew and every version of me before that. I had to fully let go of her and the life she had. Ultimately it came down to an acceptance of where I am now and who I am now. It’s not who or where I’ll be forever, but I had to accept my current situation as a whole without resentment.

At some point that happened. I don’t recall when so I know it was a gradual shift that happened over time. Letting go a little bit more each day and grieving that loss. Because it was a loss that needed grieving. Unless I allowed that and processed it then I’d still be fighting where I am now. It’s a scary thing to do – to be willing to let a version of you die.

I’d be naive to think that I love my life right now. I don’t, how could I? But I do accept it. I accept how small my world has become, how much I’ve changed and how I have to embrace the small windows I get where I can see others or do things. It’s been a struggle.

There are some feelings that never go, like the constant feeling of being isolated and alone. The ‘cabin fever’ from being stuck in the same room or house for years and only being able to escape a couple of times a week for a couple of hours. I spoke to my friends this week and it came up in conversation that I don’t know when but at some point I was able to see them without having a breakdown as soon as I was alone again. It hurt like crazy saying goodbye and the loneliness and isolation would hit me so hard. My few hours of freedom just weren’t enough, I needed more and I’d come away feeling robbed and bitter. Bitter about how cruel life was being to me. That it could only give me a few hours with them but those few hours would cost me a lot in pain. Physically and emotionally.

I’ve learned to accept that exchange. A few hours of freedom and pretending life was normal in exchange for increased pain. It became worth it because I knew I needed those few hours to survive. It stopped being a punishment and became an acceptable compromise for the benefit of my mental wellbeing.

Then there’s the hope that nothing stays the same forever. Finding the strength within me to fight the system and get the treatment I deserve and the strength to continue fighting. Hope has kept me going even though I’ve often thought I had none. But I knew deep inside that while I didn’t want to live like this any longer I also knew that if I kept fighting I might be rewarded the chance of having a life again. That’s what I hope this treatment will give me. A chance, no matter how small, of a life worth living.

Part of me does fear what would happen if this treatment doesn’t work but I’ve survived this far by telling myself to ‘trust the reroute’. That’s been my inner motto all this time. I have to trust that there is purpose in my suffering, that it is part of my journey to the life I am supposed to have. Because from my suffering there has been great personal growth and finding. I feel like I’ve truly started to find who I am, my core values and my core personality and beliefs. From this I believe I have stronger foundations to build a life that is true to me on the other side of my suffering. So I must also believe that there is a life after my suffering.

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.

I’ve realised that while I’m still writing away in the notes on my phone I’m not sharing as many of them on here. I’m truth I’ve been suffering with such conflicting feelings recently that I didn’t feel I could or should share them. Some things other people don’t need to hear, especially if it concerns people I’m close with. We all have dark thoughts and sometimes a public domain just isn’t a safe place to share them.

So I’m here to write in a much more balanced manor and share with you all my news. My surgery has been scheduled. It’s on October 2nd. 21 days away.

I got the call on the 31st. I’ll be honest about why I was conflicted. It’s because my surgery is 11 days before I’m due to be a bridesmaid for Darcy. My immediate reaction was pure devastation because there’s a chance I might not be at the wedding. I have no idea what my recovery is going to look like, only that my last op was absolutely horrendous. I had my pre op Thursday and I asked about recovery, I was told ‘this specific surgery has been done so few times that I can’t give you an answer’. Which of course didn’t fill me with much confidence!

So I had my panic. I panicked to my mum and Han, my sister Tash and then Darcy’s mum, Trace. Each gave me amazing advice and calmed me down a lot. I then spoke to Darc who’s reaction was so heart warming and amazing. She was just so excited for me! So I decided to no longer be conflicted because those around me are so excited and just want me to be well again.

I will continue to prepare for the wedding because even if I just get to do the ceremony, speeches and dinner I know I’m going to feel like I’ve won the lottery. I will of course prepare for my surgery. Though I don’t quite know how. Currently it is mostly allowing the feelings of panic, fear and excitement flow freely through me.

I tried my bridesmaids dress on last week and I actually felt so beautiful. I didn’t think it was possible because I just don’t recognise me in my current body and size but I did and I’m so excited at the prospect of wearing it on D&Cs big day.

Honestly I feel absolutely zero pressure about the surgery or the wedding and I feel that’s going to put me in with a better chance of making the wedding. Because it’s something that is genuinely so important to me and unless it’s going to significantly impact my recovery then I will move heaven and earth to be there for my girl.

I got to do that this weekend. Darcy’s hen weekend was incredible! I didn’t get to stay the duration which was to be expected but what I did experience was absolutely amazing. Just a huge group of women showing how much love they have for Darcy and how excited they are for her and Courtney. It was beautiful to witness and be a part of. She’s an incredible women and I’m so grateful she got to see just how much she means to those around her!

Anyway that’s me out of words and news to share. No doubt I’ll be back soon panicking about the op and having a chunk of my lovely curly hair shaved off. For now it’s r&r till my big day!