Trust and hope.

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.

What are my next options?

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.

Am I doing enough?

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.

The gift that keeps on giving.

‘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!