Month: October 2023

I’ve noticed a kind of shift in myself this last week. Nothing wild. A pull towards healthier meals, more green and less beige. And to the kind of activities I want to do. A want to do more crafts, to have deeper conversations and to prepare for the things I want to do when I am more able.

For the past few months I’ve been meeting with Laura and Kalie and we’ve spent our time chatting and painting ceramic pumpkins. Simple crafts that we’ve enjoyed immensely. But mostly it’s been the time to chat, to learn new things about each other and discuss shifts in ourselves as we enter more adult adulthood. Everything from our childhood to our experiences that have shaped us. These are the kind of conversations I live for. I value them so much as I truly believe that you can learn from every person you meet in this world.

For me this time has developed a friendship I deeply value with Kalie and strengthened by bond with Laura. It’s also meant I got to stay on and do crafts with my goddaughter Amy when she gets home from school. I’ve always struggled with imagination and a kids tea party is the most uncomfortable, awkward experience for me. Cause I just can’t get down with kids like that. But if they want to paint things, do science experiments or get covered in mud doing typically ‘boy’ activities, then I’m the one doing it beside them. Encouraging them to mess up, get creative and push the boundaries of what they think they can achieve. Or to wow them with science experiments, especially if they make a mess. I’m that Auntie Chloe. I can’t be silly, but I can be fun and messy.

I love to have deep conversations, to play and be creative, to eat street food at a pumpkin patch or sit with a coffee in great company. I’m fairly simple, but I feel a draw to do a little more of these things.

I’m desperate to be more mobile, more active and more creative. I’ve always wanted to learn to ice skate properly, to be able to push past my fear of falling and losing a few fingers to someone else’s skates, and be free on the ice. I’m not there yet but I found myself actively researching skates and lessons for the time I am ready. Because I’ve always denied myself these things. I’ve feared doing them alone, but I don’t want to hold myself back from experiencing the things that I want this time round.

The trouble I have is that I don’t hold myself back when it’s actually vital. I’m on day 2 of bed rest with higher pain and deep exhaustion. Friday I did it all. It was a whole day of last minute plans with friends and family. I was active from 10am through to 7pm. ‘Too fucking much’ I hear you chanting at me, and you would be correct.

What I’d forgotten was that Tash was round on the weekend. Mum arranged that it would be Saturday and I thought it would be an easy movie day where I could still rest. I had a need to get outside and so Tash and I took our dogs into the field for a short walk. What I didn’t realise was that I’d be cooking dinner, though Tash did help some with this. At the end of the evening I was on empty, not even fumes, and in pain. I was a little miffed that I’d been put into a situation where I had to do more than I was capable of without checking with me first. But equally, I’d done exactly the same to myself on Friday. I did more than I was capable of and I didn’t check with myself first before agreeing to it.

The thing is I don’t quite know how to say no to spending time with the ones I love. I have an abundance of time, not useable time, but time. My friends have children, work, husbands and partners, dogs and much larger circles of friends. So when a friend asks to see me, even if it’s last minute, I say yes. I say yes because they’re gifting me their valuable and limited time and I don’t want to miss out on the chance to see them. For them their lives are full and busy. For me it’s slow and stagnant. Meaning to not see a friend for two weeks to me feels like 6 months. I don’t want to have to say no and not be able to see them for another 2 weeks because I don’t want my loneliness and desperation for company to consume me more than I know how to cope with. So I say yes.

The trouble is sometimes it just tips me over the edge. What I should be doing is making a strict schedule. To prebook as much as I can and if someone asks to see me last minute, if there is already one thing on that day then offer them the dates that are clear. I know I need to do this to better manage my recovery, my condition and my rehabilitation. I cannot keep saying yes because by doing so I’m saying no to my key needs. Of course I need to see my friends and family, but not at the detriment to my health. It’s not easy to balance, it’s a fucking journey my friends and I am not operating successfully right now.

The truth is I’ve never been able to say no to the people I love. My need to meet other people’s needs developed when I was a toddler and it’s arguably the hardest cycle to break free from. But also I just love to see them and I want to do it all. Despite the fact I can’t. My mind seems to go ‘well maybe today we can do it all’. It’s toxic and counterproductive. This ‘keep doing it all and failing until I can eventually do it all’ mindset is going to be my downfall until I can stop it.

But only I have that power. Only I can fix this, only I know what I’m capable of and only I have the power to say no in order to say yes to my essential needs. I wish that these patterns were easier to break, that they wouldn’t cause me so much internal conflict. Ultimately, sometimes you just have to be brutally honest, like I am being right now, and say I am the toxic person in my relationship with myself.

I’ve always craved to be someone’s priority, for someone to put me first after themselves. To be their chosen person. But I realise I’m not even my chosen person, and I think that’s the saddest realisation and sentence I’ve ever written about myself. I don’t want to break into a Merideth Grey ‘pick me, choose me, love me’ reenactment, but I felt that and realise that it’s all anyone truly wants. But I have to be able to receive that from myself.

So here’s my promise to me, witnessed by all those who have suffered my whining this far: I will try to say ‘no’ more, I will schedule and I will do my upmost to stick to it by truthfully assessing my needs each day.

One of my biggest fears in having this op was actually very vain. I was worried about losing a chunk of my hair, which I’ve only recently learned to love, and how I might go about hiding it.

However, my fears were unfounded. Post op I realised that I have so much hair that you really can’t see that I’ve lost a quarter of it. Yet, even though I know I can cover it, I’ve noticed I’ve worn my hair up the majority of the time. I feel a sense of pride over my close crop and Frankenstein scar. It’s like a badge of honour, something that is the result of a surgery that I believe has saved my life. Of course I should be proud of it.

But now my hair is growing back at a rate of knots, as it always has, and I find myself constantly checking it and feeling a little sad when I see it covering more of my scar. Like once again this illness I have and the battles I’ve fought, just the entire ordeal, will once again be invisible to all but those who know.

People may see my chest scar and assume I have a pacemaker. Or maybe even that I’m the sort of person who may get herself caught up in knife crime. But I’ll in fact just be a woman balancing her life around an invisible illness that most people won’t ever get to know about or understand. I’m grateful it’s a rare condition, no one should ever have to experience the pain and all the autonomic symptoms that come with it. But, as someone who does know and understand just how unbearable the pain levels a human can endure are, I wish more awareness existed without an increase in people having the condition itself. I guess that’s why I subconsciously expose my head scar with pride; because it opens the discussion. It raises awareness of just how chronic a ‘headache’ can be to take such drastic measures.

I suppose that’s also why I write here too. In the hopes that someone, somewhere, might take something positive away from my experiences. Not just with this condition but with everything I’ve endured and overcome, against the odds, in my 30 years.

So, for now, don’t worry if you catch me swishing my pony tail to the side – I’m just showing the world I’ve got big brass balls while I still can.

I’ve written a fair amount since my op, but I realised the majority hasn’t landed here. I’m not sure why, it’s not deliberate. I suppose these last 3 weeks are a bit of a blur as I’ve become a bit of a passenger while I recover and adapt to my new gadget. So anyway, the rest of this post is actually something I wrote Sunday evening and I’d particularly like to share those thoughts with you all.

Sometimes I have a moment of feels. It often comes at strange moments where I suddenly need to write. Like now, 9 laps into the Austin GP.

This evening I’m suddenly hit with an intense feeling of pride. I am so proud of myself for what I have been through. Not just the last few years but my entire life. When I think of it all I could best describe myself as a resilient motherfucker.

And not just my physical health, but mentally too. This week I had a fairly intense session with my therapist and it ended with a kind of goodbye. This next chapter of rehab and figuring out my life can only be done by me and she feels I have the strength and tools to proceed. So we compromised and booked a session for 6 weeks time.

3 and a half years ago I tried to end everything and I am so grateful to still be here. It’s all been part of my journey, of finding myself and the strength within myself to battle through these last few years. Of course I’ve repeatedly come close to trying to exit again, but I didn’t because I just had this blind hope that there had to be purpose. Purpose to everything I’ve overcome, all the work I’ve put in to myself in and out of therapy and in fighting all these treatments. I knew they had to be taking me somewhere, and I hoped that it would be to a second chance at living a real life again.

And here I am. The implant in my head is working beyond all expectations. It’s not a cure, I have bad days, especially when I over do it. But now I need to learn to live within my limits instead of trying to reach them with everything I do.

My therapist said I need to find my ordinary. She gave me a title of ‘What is my ordinariness and how can I be comfortable in it?’ My entire life I’ve always lived on the limit, I’ve pushed to all my boundaries; Whether I was doing something for every hour and minute between waking and sleeping again because I couldn’t be still with my thoughts and feelings or because I was reaching my limits when doing something because I never knew when I’d be well enough to do something again.

Now I must break that pattern and learn to stop before reaching my limits. So I can go home and not feel like absolute shite, which may in turn mean I can do something the next day too. Learning to live within the comfortable. In fact I think the only times I have been comfortable in not hitting my limits is when in education or in the gym. When I first starting exercising I was pushing my limits; training 7 days a week and breaking my already broken body. Then I learned it wasn’t working and by the time I started competing I realised my body and mind coped better by training 45 minutes 3-4 times a week maximum. My joints could cope with that but I had to learn the hard way. I haven’t learnt that with my head yet. I’m not learning the hard way, just living the hard way and this is the time for me to break that pattern.

But for now I’m just really fucking proud of myself. Despite living the hard way I am still living and less that 3 weeks lost op I’ve invested in new walking boots, a warm gilet and I’m now ready to start rehab and ease myself into life again. It’s going to be a long hard journey, to no longer be disabled, to be able to stand and cook dinner or clean a whole room in one day. The little menial tasks that are part of basic existence, to be able to care for myself and do simple household chores that have been unachievable these last few years. These are my goals now. Then we’ll look at the bigger picture!

I’m grateful to be here and I’m proud of myself of trusting my instinct and fighting for the treatment I believed would help me get a second chance. It’s all paid off. I’m immensely proud of the woman I’ve become and I know my inner child is happy to finally live a life purely for me.

I had another rough night. I was up around 3 and still up around 6.30. But I felt fine so it was ok.

Then I dosed off and had a few nightmares, one of which was about my pain being back. I then woke up just after 8.30 feeling positively fucking awful. And very much in pain. It’s a bit less than my usual 8/10, but after 5 days of its being insignificant it’s hit me hard.

I’m also not too ashamed to admit I’m absolutely fucking devastated. I knew this operation wasn’t a cure, there isn’t a cure for my condition. But as I said yesterday I was full of excitement, joy and fear. I was so caught up in that that I hadn’t considered the fact that I’d still get flares.

So at 4am, while feeling fine, I was sending Hannah a message to get her view on me trying to be there for the night before Darcy’s wedding. Whether that would be trying to push myself to do too much too soon – I knew Hannah would be honest and probably knows my limits more than me. It was easier to accept not being able to do absolutely everything I wanted to because my health and pain prevented it. Having spent all week without that level of pain I just felt FOMO because I no longer felt I had that pain to prevent it. So why the hell should I have to miss out on doing it all.

Just a few hours later and I’m hit with the harsh reality that no matter how successful this operation was, I am still going to suffer because of this condition. For the rest of my life. With no warning. Of course I can hope that the good days will outweigh the bad once again. Heck I’ve lived with this since 2015, I knew the score. But my flares were never quite like what today feels like.

Mostly it’s just shocked me, I got caught up in the moment of painless joy. This feels like a wet slap to the face.

That being said, the last 5 days were better than I ever imagined possible. I genuinely felt better than I did before the vaccine when my condition was mostly controlled. That’s a fucking win. And if I have 5 days like that followed by one or two bad then I’m ok. The surgeon was only hopeful for a 50% improvement after all.

I’m in a place of excitement and fear. It’s early days and I don’t know if this should be put into the world or not. You’ll know if you’re reading this.

But I feel like I need to get it out. But I’m scared of jinxing things or speaking too soon and having to backtrack. But I want to shout it from the rooftop.

I’m fine. I’m stiff, my sore, I’m every colour in the rainbow; but I’m fine. Absolutely fucking fine.

Aside from the operation sites, I feel better than I did before I had the vaccine.

In fact I feel so fine that I’m restless and bored already. Like I’m obviously exhausted, still taking morphine and having to lie down lots to support my head and neck. But if that wasn’t an issue I’d be up and about living life.

Like I almost feel like a fraud. I know it’s going to take time and rehab to work on my mobility and not be disabled and be ready to work again. Having 2.5 years stuck in bed does lasting damage that I can’t fix overnight. But I genuinely feel like a fraud because it’s gone.

My Hemicrania had been a maximum 4/10 since the op. Mostly it’s been a 1-2/10 so I haven’t noticed it at all as it’s been so insignificant. It’s a strange numb/achy feeling that is so minor it’s not a bother.

Yesterday was hectic. I had therapy at 11, then my dad came over for coffee straight after. Then Hannah and Ivor came to see me and we had lunch. Last night I barely slept, I’m sore and uncomfortable and just couldn’t switch off. Today I should feel like absolute shit. A day like yesterday should put me in bed for 2-7 days. Today I’m tired, I’m still sore and uncomfortable. I have a bit of a temperature and shivers which I’ll keep an eye on, but otherwise I’m fine. I have no consequences for all I did yesterday. That’s fucking unheard of.

But I don’t want to get too excited or attached to the idea that I’m now fine. It could be the morphine or the op site causing enough distraction that my body is just focusing on that. Or…I could be actually be fine.

So my mind is on overdrive. How the fuck to I restart life? How do I rehab? How to I get this do-over right? What do I do for work? Where shall I live? Where should I travel to first? How do I earn enough money to give me independence and freedom as soon as possible?

I lost absolutely everything because I became ill so how do I raise the funds to get my life started while I’m currently still a way of being able to work? How do I pay for help with rehab while the NHS are failing me in this area?

So few people get a chance to live again and be cured, how do I make sure I don’t waste this?

What does Chloe 2.0 want her life to look like and how does she achieve it?

And do I even out the undercut or just rock the 1/4 shave?

I am home and recovering, though my recovery could have gotten off to a much better start.

My op went without an issue. I was supposed to be out the same day but suddenly post op I was told I’d need to be in overnight for IV antibiotics. My afternoon was amusing for all involved, though I don’t remember many details. I was suitably numbed with fentanyl, morphine and my usual pregabalin. My theatre suite nurses were the best though. The evening and following day really ruined my experience once I was moved to a different ward. I may write further another time but I don’t have it in me now. Just to say that I was left in unnecessary pain and discomfort that I may pursue further. I did eventually get more pain medication and was eventually released yesterday evening with some morphine.

I’m obviously exhausted but I’m using the morphine very sparingly. In hospital I was on 10ml every 4 hours (once I fought my case and not including Tuesday) and since being home I’ve been on 1.25 ml every 6-8 hours – normally giving in when I move and the pain sends my body into shock with all over tremors and muscle spasms. I am allowed up to 2.5ml every 2 hours but I’d rather avoid going that high (literally).

I’m also cautiously optimistic – my device is set to stimulate for 30 seconds every 6 minutes. Currently my pain is acute at the head and chest surgery sites and where wires were tunnelled through my neck. I have head pain that I believe is because I’m stuck led on my back whereas I’ve spent the last 28 months spending 85-90% of my time led on my side (alternating). My Hemicrania pain is around 2-3/10 right now but had been 1-2/10 since post op. I know I have a lot going on and extra drugs in my system, plus the surgery pain, which could account for this – perhaps me being distracted from my HC. But I hope it is a sign of good things to come. As I say – cautiously optimistic.

In case you were wondering, while reading this, if I can feel the stimulator when it comes on the answer is yes. If you’ve ever used a tens machine on a level that you can feel but that doesn’t cause muscles twitches – that’s what I can feel in my head every 6 minutes. A strange tingle.

I’m surprised just how sore I am post op, I suppose I never considered the tunnelling of wires where there was no previously existing space for them. My head, neck and shoulders agree to be moved as one but will administer sharp, excruciating reminders if I try to move any part independently. This is worse first thing after sleeping in one position, I had to have mum help me out of bed this morning, but it’s easing a little by this evening after ensuring I move about a bit more during the day. A process that would probably be easier if I agreed to take some more morphine, having not had any since my 1.25ml at 9am, but I am terrified by personally administering opioids. Addiction is something that scares me greatly. Mum had to help me bath tonight which I was grateful for. Not something I was thrilled about needing help with, but it’s nice to wash the hospital off me. I’m not allowed to wash my hair or head for at least a week though so I’m stuck looking like the surgeons had a game of noughts and crosses.

I do know that moving forward I’m going to have to learn what I can and can’t do. Apparently on Monday evening when the surgeon visited I was told I’d have to relearn how to safely move my head. And that included no bungee jumps or skydiving. My wires are stitched in place but they won’t truly be secure until tissue heals and forms around them. Even then I have to be conscious of movements that can stretch or break them.

I’m sure I’ll update you all again soon, but I’m exhausted and this has taken me 2 days to write – though I’m glad I did as my opioid mind has not retained much from the last few days. So I’ll update you soon, when I have more energy and more to say. For now I’m alive, I’m grateful and I’m trying to let go of my anger from Tuesday. And also my hair, I’m trying to let go of my hair.