Month: January 2023

When this condition started in 2015 I was working full time, plus extra and also studying on the side. It had such a major impact on my life at the time. In the space of a month my pain went from 30 second bursts to full time. I didn’t take a day off work, I continued studying and I was on max dose tramadol. You can imagine my work and assignment output. My dad paid for me to see my neurologist privately to skip the very long NHS waitlist and in my first appointment she diagnosed my Hemicrania Continua. It took several years for me to get the medication balance right, my diet changes, sleep routine etc. but I did that.

Prior to that when I was suffering with my joint condition from a teenager and finally got a condition diagnosed I knew that I needed to fix that too. I started weight training and building my muscles to hold my joints in place. Within a year my weight was down, I was off pain meds and my joint issues were a thing of the past. I did that.

Then when I took the vaccine everything changed over night. I couldn’t control my pain, I couldn’t continue training and suddenly all these issues I overcame by myself I no longer had control over. I never told anyone about my conditions, my closest friends and family knew, but no one else. No one else needed to know because I had it all under control, I was living a life where for the most part no one would know I had anything wrong. Don’t get me wrong, despite treatment to manage my HC I still had permanent pain, but it was of a level that it didn’t affect my life. You can work through pain levels of 1-2/10 as if they aren’t there. I didn’t allow them to be a weakness.

Now they are a weakness, a weakness I cannot hide from anyone. I spent my life fending for myself, knowing that the most reliable person in my life was me. I struggled to trust others to be there for me and help me, but my way of fending for myself was to minimise myself and my issues. To give others space and not let anyone know about or help with my issues. Now I’m in a situation where I can’t do it all alone, I don’t know how to fix it this time. I’ve been forced to allow others access to me and my situation, to give them the space to help. Though I still struggle to accept or ask for it. But suddenly I have to rely on others to fix me. I have to rely on doctors that haven’t a clue to fix me.

It puts me in a really uncomfortable position, because in my eyes my quality of life is in someone else’s hands. It’s not in my control, and I hate that. Because it’s always been me. When it’s come to my health it’s always come down to me. No one told me if I built up my muscles I wouldn’t suffer with my joints, in fact I was told that cycling and swimming should be the only exercise I do and that I’d likely be in a wheelchair by 40. No one told me that meds alone wouldn’t do enough for my HC, that if I changed my sleeping pattern and my diet, or stress levels and working hours that I’d have better control over my condition and go on to successfully manage it for so long. I had to figure those things out for myself, I had to ignore doctors orders and do things my way. But here I am with no ‘my way’ available. Having to put my faith and my life in someone else’s hand and trust that they’re going to give it back to me in a better condition. But each time over done that over the last 18 months they’ve given it back to me worse, they’ve left me wishing I’d just accepted my pain levels post jab and not tried to fix anything.

This situation has made me feel so weak and vulnerable, not just because I can’t fix this one myself, but because for every day things I have to rely on others for. While people say ‘you didn’t let it stop you working when it started’, it’s because Chloe’s always been fine. This isn’t like Chloe. I feel like a victim and a hostage and it’s not like me. This isn’t Chloe-like behaviour. But ultimately this isn’t a choice and this is nothing like when it started. Not having my life in my control, someone else having the power, is a very uncomfortable place to be.

I think I’ve identified my frustration. It’s that as I get closer to this appointment I get closer to finding out if I’ve put my life and my trust in the right place. I also have to trust that no matter the outcome I’ll be ok, but I know any disappointment with devastate me. And so I also have to trust in myself that I will get through and keep going regardless of the outcome.

I’m carrying some concern and anxiety around my upcoming appointment with my neurosurgeon. There are several possible outcomes of this appointment – he could grant the implant, he could deny me the implant or he could suggest repeating the same surgery I had in November 2021 which failed.

As I’ve discussed before, my neurologist has made it clear there is nothing more she can do for me. At all. If the neurosurgeon denies me the implant or if I get it and it doesn’t help me then I am up shit creek. Unless the neurosurgeon suggests a different surgical approach then that still leaves me with the implant as a back up, but it would be wrong of me to not consider what I might need to do if any of these eventualities happen. Lee suggested crowdfunding for several reasons – one to get funding to seek research into this condition, one to use it to help get my voice heard and use it to become the advocate that this condition needs, next would be to fund treatment. I need to really consider this, the energy and time required and how to go about crowdfunding. I’d need to know exactly what it would be for and have a full plan on what I wish to gain from this.

In terms of seeking funding for treatment for myself I’d need to know what treatments I intend to pursue. There is a clinic in London who does the implant surgery, at a premium cost, that I could look into if the surgeon says no to using NHS funds for this. I’ve learnt a lot from the support group I am in and there are some alternative medicine routes I could explore. Many in the group use cannabis to treat their pain, nearly all of whom live where its legal. The most successful strain of cannabis in use is not legal in the UK, but I’m also not sure this is my favoured option. The other options are micro-dosing – with either mushrooms or truffles. Again, these are mostly used by those based in Holland or other countries where this is a perfectly legal treatment option. There is a doctor in the NHS who is currently researching the use of micro-dosing psychedelics on chronic pain, however I don’t know how to go about getting a doctor to agree to this on the NHS for my condition.

I mean what would you, my readers, suggest I should do with any of these potential outcomes? Because believe me, you’re more informed than the professionals.

Do I advocate for this disease to further research and treatments? Do I seek crowdfunding to get the implant privately if its denied by the NHS? Do I seek funding to go and explore these alternative medicine options? Do I seek funding to research myself what does and does not work – such as nutrition (specific diets), alternative medicines, exercise, etc (all suggestions welcome)? Do I shout about this to the press in the hopes that someone, somewhere, will read about it and decide that they want to look into this disease further? Because I can’t believe that there isn’t a neurosurgeon or neurologist somewhere that wouldn’t see this as a challenge they want a go at solving. But there is also a part of me that says why should I expect others to fund my treatment and that’s real. I don’t know that I deserve to ask others to do that for me, to seek the help or pity of strangers to make me better again.

Lastly I think when I’ve reached the end, whatever that might look like, when my story with this disease reaches a solution I think I’d like to write a book. I thought about writing a book now, but my worry is that if I were to do that now it would look a lot like my blog – messy, dark and all over the place. But I feel like I need that closure, because this isn’t just a headache, perhaps to me it was when I had it under control, but now its a disease that’s disabled me, brought my entire life to a crashing halt, stolen my career and a meaningful existence, trashed my mental health and has forced me to go insolvent with my debts. I mean when it reaches its end I’m sure it’ll be a hell of a story to tell. A story which won’t all be bad because without the time and space this situation has given me I wouldn’t have been to really dig deep to my very core in therapy. When I get to start my life again it won’t be the same Chloe that took the Pfizer vaccine in June 2021, it’ll be someone completely different. Not just because trauma changes people, but because I’ve had the time and space to find who I truly am and what I truly want from and in my life. I now know my values and needs, and I will live my life with such intent that it really will be like a do-over. And that deserves some space on a page.

I’ve just finished my therapy for the week with Lee and several things came up. I will probably have several journal entries to share once my fingers and my mind are finished as there as several things I want to write on to see what comes up.

First is that I am harming my self. I need to recognise this for what it is and be honest with myself about it. For many, when they read or hear that someone is harming themselves what they picture is likely to be cutting my wrists or legs, a very common form of self-harming. But there are many other ways this can manifest and for me this is picking. I have picked, scratched and chews the skin on my fingers to the point of bleeding and infection and have been left with very sore areas, with red raw skin and scabs. I also scratch and pick at my face, my scalp and the back of my shoulders, and my upper arms. I, through discussing this with Lee, is likely a result of frustration, anger and probably sadness.

Of course this confused me because as you’ve read I have many good things happening, not necessarily things i imagined or hoped would happen, but ultimately they are positive. Like my Debt Relief Order (DRO) for one – I’d never in a million years wish to have filed for this insolvency service to clear my debts, but unfortunately the condition of my health left me unable to continue handling my debts as I was when I had a steady income. It’s not the route I would have wanted to take, but ultimately, it has removed the burden of stress from my shoulders, a burden I do not have the capacity to bare. So it’s a good thing.

Yet here I am picking at myself, or snacking unnecessarily to try and distract from the picking. The reality is that while these good things are happening, I still should not be in this position. I often find myself wishing I had cancer, nothing fatal, maybe a stage 2 cancer. Because at least people have heard of cancer, at least there are many treatment options, at least there is funding for more treatment options to be researched. At least when someone finds out you have cancer you don’t then have to explain what it is to them or justify why it has brought your life to a standstill. 3 times this week alone I have had to explain my condition to medically trained professionals, I’ve had to explain in detail what has happened to my since the Pfizer vaccine to justify why I am on pregabalin and why they need to action my prescription request. I’ve had to explain why my mental health is suffering, and to the extent my suicidal thoughts go, in order to answer their question on why my antidepressant dose was increased despite the fact that it increases the high effect from the pregabalin. I’ve had to explain, again in fine detail, why a ‘headache’ means that I spend 80% of my time led in bed in a dark room, unable to work, walk Bella regularly and how some days its so bad I can’t do anything more than nothing. How the exhaustion from this constant pain and the impact not training has had on my mobility means that some days I can barely get from my bed to the toilet, or that I avoid going downstairs when I desperately need a drink. Instead, I lay there, dehydrated, busting for a wee, and leaving it until the last possibly minute to go.

I waste the majority of every phone call or appointment with a doctor running through all of this just to get the medication I so desperately rely on to bring my pain down to an 8/10. Hardly seems worth the hassle, right? Especially when you realise that I have to inform a medically trained professional on something they know nothing about, and then trust them to make the right decision on my ongoing care or medication. Knowing that the only knowledge they have is what I’ve jsut relayed to them.

This is a lot of my frustration – that I have such a rare condition, a condition that’s also very rarely seen this severe and debilitating. A condition that is severely under-researched, under-funded and unheard of by most. I started sharing my journals because I wanted to help others – and I know I have helped some. I’ve helped my loved ones understand me and my situation better, I’ve helped some with mental health struggles feel less alone, I’ve helped those with my condition who have shared some of my posts with their loved ones so that they can be better understood. But what I have failed to do is shed light on this disease, to make it seen and heard, to make it relevant and to find help and funding to find better treatment or to find the cause so that someone can find the cure. Yes, I have played Russian roulette with treatment options, but they’re treatment options that those responsible for my healthcare didn’t believe would help me in the first place. Yet, I felt forced into trying them, because unless I did the surgeon wouldn’t consider surgery. Imagine being told ‘we don’t use this to treat Hemicrania Continua because is very rarely works’, right before having 31 injections around your face, head and neck – starting with one right between the eyes.

So yes, I am grateful that me and my small time blog has helped some people, but its not enough. The power of social media is incredible and immense, it can be hugely damaging too, but it takes a lot of time, energy and funding to truly have your voice heard – especially when you’re sharing a blog from just one person who’s suffering. Its easier to gain traction and interest when you’re shouting about something that has impacted most people. But unless more people like me write what its truly like to have Hemicrania Continua, and the sufferings, challenges and allowances that come with such a condition, then all people think is ‘it’s just a headache’. And then they suggest you take more paracetamol. I’m grateful that those who surround me understand me and my condition so well that I don’t have to worry about any of these frustrations with them. But I don’t know that that is enough for me, because I want to achieve more from my suffering and I need somewhere to channel this frustration.

‘It never rains, but it pours.’

It’s an old saying, usually heard in a negative context when the universe appears to be conspiring against you. Today it’s in a positive context.

I know I posted a blog a mere few hours ago, but the universe have continued to bring things back. The 3rd thing on my wish list of returns – an appointment with my neurosurgeon. The post came through and I instantly saw the dominoes menu on the floor. Obviously I did my usual and picked it up to check the deals on a fast food place I never frequent, and put it in the recycling. Going back through the hall, I had t spotted letters hanging out the letter box. A brown one which can never be good. But it was good, it was finally an appointment on 8th feb at Southmead. I honestly couldn’t be happier.

I’m also overwhelmed, it’s a lot to happen in just two days, but it’s a good overwhelmed. All I need to do now is trust that my surgeon will agree to proceed with the implant as I have tried all non surgical methods available, as he requested.

Another positive for today is that having done the drive to and from Bristol yesterday I predicted today would be a little rough. But as it happens, today is just an average day. My pain is at its usual 8/10, no shocks of pain, not a significant droopy eye. Just a big standard normal day. I couldn’t have predicted it, and it’s a welcome surprise. Especially given I have to wash my hair!

I said yesterday I’d done all I can do and now I had to trust the universe to bring things back to me. That trust turns out to have been well placed.

Yesterday at the vets, they checked out Bellas eye and the cyst that has appeared. The cyst has grown down and now it would be too risky to operate on it. As it’s benign and out of her line of sight we’re going to leave it be. It could mean that at some stage the eye will be compromised, but for now she gets to keep it in all its pale blue glory.

Today, just two days after my DRO application was submitted I received an email. My application has been approved and in just 12 months my debts will be gone. I will have a clean slate, and hopefully I will be on my road to recovery by this point too.

My therapist set me an exercise before new year, to put together a visualisation board. I’ve started it, but it’s in my head in and the notes in my phone rather that physical. Of course I started with having my own home – I can’t help but think how liberating it would be to have my own space, or my own design, as a young woman finding her place in the world. Next up is my next steps. I’ve spoken before how I might not go back to engineering. Truth is the construction industry comes with a significant stress load, even when you’re on time you’re still up against it. I loved what I did, but it was also restrictive in terms of being stuck at a desk everyday or not have the time or money to travel. It also didn’t fulfill my purpose of helping others. Instead I’m considering going to university to study therapeutic psychology. It covers the area of psychology I’m most interested in and allows me to choose a career in this field that includes being self employed. This allows me some freedom to create a work-life balance that suited me. Because what I want from life, when I begin to be, is to be a stress free as possible, with the financial freedom to do the things I want to. My bucket list items of places to travel, adventures to do and adrenaline to seek. I’ve spent 29 years denying myself all of these due to believing I didn’t have the time or could afford or justify the cost – I won’t deny myself like that anymore.

Now, I will trust to universe to keep bringing back to me. To allow me to begin to be again.

Many things will be happening this year for me, many things this week alone. I like to try and balance my time, ration my energy. But this is one of those weeks where I just don’t foresee the right balance or rationing. Instead I see the following week being a right-off. This bums me out because it means, aside from more pain, that I’ll be fairly unlikely to be up to doing a lot else other than resting. But it’s just a week.

Today I have to drive myself and shells to Bristol to see the specialists that have been dealing with her eye. There’s a chance I might be coming back alone and she’ll be having a sleep over after more surgery. Normally my dad drives me there and back for her check ups and surgeries, but as he’s bogged down with work I’m going to have to drive myself. Unfortunately, the drive alone will bring a heavy consequence, let alone the emotional weight if she ends up in surgery. But it cannot be avoided, and it’s a consequence I will always be willing to pay.

Thursday my dad has booked us to go to Autosport International at the NEC. Some of you will have read the cost of me going to a car show late last year. It was a lot, not just the endless walking, but the early wake, the movement or the long car ride there and back, and the late night. It’ll be a lot, because for me even just sitting upright is a cost. But, I seldom do these things, and it’s not often I get to spend time with my dad outside our near daily coffees. It’s something we both enjoy, and something under normal circumstances I’d be excited to do. But it comes in a week that just happens to already be busy for me.

Friday, following therapy, I have a physio assessment. This is following my referral requesting hydrotherapy. I’m really looking forward to this, not in an excited ‘this is gonna be so much fun’ way, but in a my joint paint is nearly equal to my head pain and I could really do with some help with that kind of way. My hands, back and feet are the biggest problem for me. My hands hurt from my wrist to the tips of my fingers, and at the moment I have a job to write with a pen or do my paint by numbers. I have the same kind of issue in my feet, but thankfully I’ve no reason to write or paint with those. The negative is the worse my joints are the more I click, not deliberately either, though I do click to relieve the pressure I feel. This also includes my jaw too, which is also impacted by my HC pain. All clicking and hurting. It’s like being an old lady, the trouble is that I have to be extra vigilant to ensure nothing pops out of place or dislocates.

Anyway, fast forward to Sunday, and I’ll be driving my mum and I to Wolverhampton to visit my brother and his family. Unfortunately, due to her eyesight and the likelihood of driving in the dark I’ll have to be the driver. I’m also a very bad passenger, particularly with my mum. I’m really looking forward to this and am so excited to see their new home and their kids. I feel nothing but love when I’m with them, and much like when I was a kid and my brother came to stay, I still think he’s the cool big brother. I just hope that between the car show and physio, that I’ll be able to recover enough to a, safely drive, and b, enjoy the day!

Obviously I also have my therapy sessions scheduled. Yesterday my DRO application was submitted, so I’m also a bundle of anxiety waiting for the decision on that. But I’ve done all I can, now it’s up to the universe to bring it back to me.

As I say, a busy week my my standards, very quiet by a normal persons. But it’s just a week, and it’s a mix of things I have to do, things I need to do, things I want to do and things I just can’t control. So while it’s too much, it’s well balanced.

I’m not sure why I wrote this one, probably because I can’t stop thinking about how much I have to do. But I think I might start writing a little more about things I do to cope and manage, not just my pain, but my depression and anxiety, or even my joints. I have certain things in place, and very practices, that I’ve adopted in order to help me cope better. The sorts of little things that might help others.

Hello, and welcome to a new year.

I wanted to share a few bright things to start this year on a good foot. First off – my NYE. It was my favourite to date. I spent 80% of December stuck in bed, so I was determined to get around to see my friends, even if, like Cinderella, I needed to get myself home before midnight. It started at Hannah’s house. Her home was filled with her family, partner, and a couple of friends. The whole house was just bursting with joy and love and I felt every ounce of it. Cooking together, laughing, playing games, and checking in on each other’s Christmas celebrations. It was beautiful to be a part of it. Then I popped a few doors up to see my goddaughter Amy and her mum, Laura, who’s a very old friend of mine. It was brief but heart warming as I hadn’t been able to see them since mid December. Then I jetted off to Darcy’s, where her and her partner had a few friends round to see in the new year. I saw some old friends and we laughed, and played around and ate. The lads went off to watch lad shit on YouTube and us ladies just basked in each other’s company, full of laughter and even a tequila shot. It was another home filled with love and joy and, again, I felt every part of it. I left a little before 12, later than I thought I’d last, and I got to spend the big moment with my mum. The woman who has been my career, friend and supported for these last 18 months. I’ve never felt so loved, and yet it was so simple.

Since then, I’ve been blowing up my neurosurgeon’s secretaries phone until she finally answered this week. As a result I’m now 2nd place on his year long wait list and they’re booking 6 weeks in advance. So it won’t be long before I get an appointment letter, and should be seeing him in just a few months. Light at the end of this dark and painful tunnel. Finally a step closer to getting the implant.

In the background over the last month I’ve been trying to deal with my debts. December finally saw a decision made on my health assessment for my UC and ESA, which means my income finally covers my outgoings. As a result, I was able to get back in touch with StepChange to get their help. If you ever find yourself drowning or just overwhelmed by your debts, I truly cannot recommend this charity enough. Every person I’ve spoken to has been lovely and kind, understanding and nonjudgmental. So behind the scenes I’ve been working with them and whatever route I took my credit score would be damaged for the next 6 years. However, not dealing with it would also damage my score for 6 years and land me in court. So we went for option 3, to damage my credit score for 6 months and be debt free in 1. I opted to apply for a DRO, which is insolvency. If my financial situation hasn’t significantly improved in 12 months it’s all written off. The reality is that I’m still waiting for a consult, then I’ll be waiting for the actual surgery, then going through rehab. This isn’t a less than 12 month process. It’s been a bitter pill to swallow – that this is where my finances are at because I got a vaccine, but that’s not what this post is about. But it’s still hard to accept that I’m going insolvent, and a decision will be made on that in the next 10 days. It’s hard to accept any of what’s going on with me because of a vaccine, but I still have to face up to it all. And this, while taboo and something someone might judge me for, is a huge fucking relief. That when I’m better I might also get to restart life with a clean slate is enough to make a girl cry.

I’m glad I get to come here, with my first blog of the year and share good things and good energy. That’s going to be my focus this year, is taking the fucking wins. Jay Shetty put a post out the other day with an idea that each week he will write something good that’s happened on a bit of paper and put it in a jar. Then next NYE he’s going to open the jar and read them all. And I’m going to follow the trend, and each week I will fill my jar with something great that has happened for me. I might even write everything great that’s happened that week. And I started by writing about my NYE.