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So I had an interesting afternoon. I went shopping for a recliner chair and a walking stick.

That’s my reality. I realised the last time I went out and did something was in July. I’d gone to a garden centre with my and I was really struggling. I struggled with my mobility and my head pain. Walking increases my pain and it can make an already bad day unbearable. It was also very hot and sunny and bright light also doesn’t help me out. We walking through a few bits, I left my mum to walk around outside and chose to wait just indoors for her. But I ended up needing to sit down on the floor. Mum finished browsing and helped me back up again. Then walking round further inside I needed to rest on a shelf. We decided to go have coffee and something to eat in the cafe to rest. Then tried to go look round a bit more with little success. They had wheelchairs available and my mum kept suggesting using one might help me be able to enjoy the time without suffering. Obviously I’m a stubborn cow so you can imagine how that idea was shot down.

I haven’t been anywhere since. I realised while on the phone to a friend this weekend that it was out of fear and anxiety. Mostly fear that my experience would be the same. Since then my mobility and general stability and stamina have decreased significantly. So fear that I’d have to leave early, fear of increasing my pain, fear of embarrassment of needing to use a wheelchair. Fear of being a fraud.

That’s a big one. I felt it today when looking at a recliner. Bare in mind that I spend 90% of my time led down as this is the only time my head in supported and so my pain is less intense. I was looking at said chair when a severely disabled old lady walked in with two sticks. I’m stood there thinking what a fraud. Because I’m not THAT disabled. But as my therapist said, I might not be THAT disabled but I am disabled.

There’s also the other conflicting feelings such as am I enabling my disability. By using walking aids to try and make things easier, will that in turn make me worse? Is it succumbing to my condition? Is it me giving up on not being disabled?

But it dawned on me in speaking to my friend that perhaps if I took a walking stick when going out and doing things perhaps I might be able to go further. Perhaps I might not be so scared of falling and I might just be a bit safer. But I’m 29. Only 29. I shouldn’t have to be even considering these things. But on the other hand, I’m only 29. I shouldn’t be too scared to enjoy life when I can. I shouldn’t be too scared to do anything too scared to not allow others to see my suffering.

Because I am. I know full well that I push through to try and appear like I’m not struggling when around my friends. I don’t want them to see me how I do. Because currently I’m stuck in this space if only seeing myself as this sick disabled person. I’m only seeing my suffering. Because I’ve been too scared to do things that bring out my joy. The other side of me that’s lively and vibrant, funny and silly. I’ve lost sight of that Chlöe because of fear. And that’s a dangerous and terrible place to be.

So I’ve decided that I will buy myself a walking stick and a recliner. Because it’s self-care. It’s a form of support that I need right now. I need support to enjoy life. And I know eventually I’ll feel ok about that. I know eventually I won’t be so embarrassed or feel shame about embracing where I’m at right now. And I know damn well that getting back to enjoying life when I can is worth pushing through these negative feelings.

I don’t normally write when I feel like I do now, but I feel it’s important.

I didn’t do a lot today. Like every day it’s starts early, getting myself and Bella breakfast and take my meds. Around a 20 minute routine which is always followed by returning to my bed to lie down and read my kindle while waiting for my meds to do something…anything. I don’t go back to sleep, though I could. I try to keep a normal sleep routine because one day I’ll be back to working and it’s important. Anyway I got up around 11 when my dad came over for coffee. He left just after 12 and I packed up a puzzle I’d completed over the weekend. I then had a phone call with a good friend and relaxed for an hour. I then hoovered the living room, filled up Bellas kibble bin and put the recycling out.

I know, it’s boring and not a lot happened. But now I am too the bone tired and my pain is a 10/10. I think it’s important to discuss what overdoing for me looks like. This is it. This is why leading a normal existence is not possible for me.

But I soldiered through and pushed myself to prepare fajitas for dinner. I’m not that safe in the kitchen anymore, and my energy and pain levels don’t allow me to cook often. But I think it’s important to push through sometimes, though doing so means tomorrow will undoubtedly be horrible. But I need to do normal things sometimes. Sometimes I need to feel normal.

I haven’t written at all the last few days. Thursday was the best day I’ve have mentally for months. The first day for as long as I can remember where there were no suicidal thoughts or feelings. The caveat was I felt like shite.

However, I got and did because those days are rare. The day before I’d spent hours with a friend talking and actually laughing. Then on the Thursday another friend came over and again we spent hours talking and laughing. Then I had therapy which was just ‘chewing the fat’ and then my dad came over for coffee. BUSY. Well, busy for me, just a standard day in my previous life.

But my day started with a text. My phone lives in do not disturb so I pick and choose when I have the capacity for contact but I do check it periodically for anything important. And I woke up to something important. DWP text me to say I had been awarded pip and a letter would be through in due course with further details.

This is a double edged knife really. On one side, I’ve finally been seen. Someone finally noticed me and my struggles. On the same side was also the relief of easing my financial stresses. Because all my funds are gone and £300 a month doesn’t stretch very far at all. Then there’s the other side of the knife. There in black and white…I’ve been deemed disabled. But the relief was what I felt most.

When I discussed the mixed feelings with my therapist and raised the ‘I’ve been deemed disabled’ part she raised a very valid point. It doesn’t mean forever. Right now, someone has acknowledged your struggles and deemed you worthy of help. But just for right now. Not always, not forever. Just this current period.

Maybe that was the kick of my good day, because we ALL know the toll financial stress can have on you. It’s heavy. Mine is also laden with guilt because my situation directly impacts those around me. My mum in particular, who not only cares for me but has been covering the bills while I’ve had barely anything coming in. So my financial struggles then in turn cause her financial struggles. So maybe that text just helped me feel able to breathe freely for a day.

My head hasn’t shown much positive response yet. I had that one good day but it’s been hell since. I get different types of pain in different locations around the right side of my head. Usually not all at once, just one or two types/locations at a time. Since the CGRP inhibitor it’s been all of it switched on all the time. So my out of 10 pain hasn’t changed much, but with it all switched on the out of 10 is irrelevant because it could be a 3/10 and still suck. But generally it’s a minimum of 8/10 and I see full marks every day.

I also feel super exhausted. Obviously being in pain constantly is exhausting but I wake up and feel like I haven’t slept and it’s too the bone exhaustion. Bella is also full of beans. My life has changed dramatically and so hers has too. She’s gone from being around other dogs and on 3-4 walks a week, with one usually been around 3 hours. She’s never been a daily walk dog, she’s lazy! She also went everywhere with me, the office, friends houses, pubs and cafes, the beach. She was there for it all, by my side near permanently. So will I’ve become this largely house bound exhausted person who’s rarely able to do anything it means she’s had to become the same. Like I said, she’s always been lazy but dogs get cabin fever too. Her separation anxiety has also got worse if I do manage to get out for a few hours and she doesn’t come. But then my separation anxiety from her has got worse too! Despite being my lazy dog, she’s bored and under stimulated and lonely. In turn, she’s nearly 10 and going through the terrible twos! I wish there was more I could do with her and for her. For both of us.

My Saturday mornings used to be so different. We’d get up early (like I also do) and jump in the car. Swing via Tesco express, crab coffee and a pastry and then drive out to Vallis Vale in Frome. Arrive 8am latest and leave somewhere around 11/12. It’s her favourite place and mine. The one place I can fully be present with no thoughts or emotions. Just at one with my dog and nature. Out of everything I’m no longer able to do this is the part I miss the most. The drive would be too much for me, and if someone else drove it’s not worth it for the distance I’m able to walk before my pain gets too bad. Also, while I enjoy the occasional walk with company, this particular walk became my alone time. My time to be grounded and at peace. So it’s not the same with company.

I told myself that when I get better before I even consider going back to work I will take a holiday. Because I never have, and I don’t want to return to the same ‘work before everything else’ mindset. I can’t handle stress anymore and from this I’ve learned what is important and what is not. My core values. But I was wrong. The very first thing I’m going to do is take Bella to Vallis Vale for our long walk. And I’m going to do this as often as I can. And we’ll go to the beach again, and watch the sunrise at the top of Cley Hill and have ice cream at Shearwater. We’ll do it all because while I know I need a holiday, my dog does too!

Today my Grandad was cremated. We aren’t having a service, at some point we will scatter his ashes together with his loved ones.

It feels very strange. Aside from the fact I’ve seen him nearly every week of my life, it somehow felt like it’s not real. Until today. Until I knew he’d been cremated, and that he is in fact no longer with us. With me. I had a foolish belief that he would always be here with his smart mouth and dark humour. There’s never been an occasion I’ve been with him that he hasn’t made me laugh, usually within the first few minutes.

I didn’t know how I would feel today but it did give me pause. I knew he was being cremated this morning, and so I felt uneasy until midday came around. And without a service I felt so lonely on his behalf. (I do that a lot, feel other peoples feelings.) So I wrote him a letter. I won’t share that here, perhaps I’ll read it when we scatter his ashes. But for now that’s my own deeply personal writing.

My Grandad was a complicated man and I felt I could really relate to him on that. My truth with him was that he was a wonderful, strong and gentle man who was grateful for every visit or encounter. He taught me so much, and I know family gatherings will feel a little less whole without him. Every Christmas I’d make sure he was sat next to my sister and I’d sit across from her. Seeing them wind each other up, in a jovial way, was something I’ve enjoyed over the years. Not in a laugh at making someone else suffer sense, but in a he gave as good as he got and loved it. He just wanted a good bit of banter.

This man introduced me to his children, and in turn their children. As a result my sister and I grew up regularly seeing and making lifelong memories with this extended family of ours. Beautiful memories as a result of my wonderful Grandad, and of course my Grandma. One of the strongest women I know to match one of the strongest men I know.

But in his death I’ve learned more about how complicated he was. I know more on the pain he caused others. That wasn’t the man I knew, or the man I ever met. For that I am forever grateful because he ensured he gave me the absolute best of him. For those he didn’t always give his best to I can only wish he had. I wish more than anything that they only ever knew the man I did. But I also know that’s not how life works. It hasn’t changed my views on him because it doesn’t change my truth and my experience. But I know I can respect and honour the experiences others had without diminishing mine.

I truly believe the hurt he caused came from a place of fear, mostly fear of vulnerability. I mean I don’t know, I could be way of the mark here, but that’s my view. It doesn’t change or excuse what he did but he also came from a time where you don’t face up to your demons or your suffering. This is where I can relate to him. Except I’m in a time where it is increasingly encouraged to face your fears, to explore them and heal them. Because hurt people, hurt people. And my fears and traumas were hurting people, myself included. I now know better.

I’ve digressed a bit, but I wanted to write something about one of the most wonderful men I’ve had the fortune of being so close to for 29 beautiful years. A man with whom I share so many memories and a man who I hope knew he left his mark in this world. In me.

I didn’t intend on putting the more personal posts in my blog, but I realised I want it to be a true reflection of me, my thoughts and my life. About things that are important to me and not just this journey I’m in with my health at the moment. And not for the benefit of others, much as that is the aim of sharing my blog. But it’s still my journal after all, and so if or when I choose to look back at it I want to be able to see it all.

Here’s a tough one I just admitted during my therapy:

I don’t want the CGRP inhibitors to work.

There now that’s out I can discuss it a bit better. I’ve been on medication of varying levels since I was a young teenager. At the age of 13 or 14 I started having severe migraines without the pain. My pupils would be massive and everything was blurry, they called it silent migraines. This progressed to painful migraines. Then my joint issues started. Then Hemicrania continua joined the party. I’ve been a pill popper for as long as I can remember and I’m sick of it. Sick of having to fill my body with poisons to have a normal, low pain existence.

I find it demoralising to sit filling up my pill box. I currently take 8-10 pills a day. 5 different medications, plus now the monthly injections. At times this has been as high as 14-15 pills a day. It’s been at this level for at least 7/8 years. But daily pills for well over 10 years.

I am sick to death of it. Sick of relying on drugs that cause their own additional issues. 3 of my daily pills are purely for protection from what the other pills do to my body.

Currently I am a lab rat. We trust in medical professionals and assume they know what they’re doing. But even my neurologist says ‘I don’t know what to suggest’. She said that word for word earlier this year. So they’re throwing more drugs at me in the hopes something will work. But they’re throwing blind because they just don’t know. There’s little science behind what I’m going through or the treatment being given.

So I don’t want the CGRP Inhibitors to work because it’s just another drug. I don’t want to take pills anymore or injections. I don’t want to be a lab rat or suffer the side effects of drugs. I’d much rather give the occipital nerve stimulator implant a chance because it’s not a drug or poison. Of course is is a foreign body surgically implanted into my body, but it’s not more pills. So I’m sitting here hoping that the treatment I’m on will work, but also that it won’t. It’s so conflicting having these feelings. I want it to work, because I need to get better because I know I can’t stay like this for the rest of my life. But a foreign body sits much better in my soul than more drugs do. I want to take as few drugs as possible, preferably none at all.

I know that’s asking for a lot. That I am desperate to find something to help cure me, but I also don’t want that something to be medication. It’s a tall order by anyones standards. But it’s my truth.

The last few days have been very heavy following the revelations of where I am mentally last week. It’s been tough and exhausting and overwhelming. My head has been on fire and my body has been on shut down. Today is better, I’m a little less exhausted and a little more human. Though my head hasn’t changed.

My therapist asked me about why I struggle to show up for myself and demand to be seen and heard by doctors whether that’s about my mental health or my head. When the surgeon said in April that he wouldn’t be doing the implant, again, I completely shut down. I wasn’t present in the room and my dad had to take over. I should have stayed present and demanded more for myself.

Then she asked ‘are you scared of getting better? Do you not want to get better?’ That hit me. It made me really stop and think. Because it wouldn’t be as simple as getting better and everything being back to normal. It would be another uphill struggle of rehab because this disease has had a hell of a toll on my body and life. It wouldn’t be just jumping back into life. It would be a slow and exhausting journey and I don’t know what that looks like. Rehab, slow training, slow return to work, slow rebuild of my cognitive function and agility, slow everything. And I know that whatever treatment turns out to be my saviour comes with increased pain first. That’s something I have to face, that my head will always react negatively first and I have to somehow push through that to see if there’s light in the other side.

Equally, should I find a cure I’d be faced with a clean slate. A new start at life. What do I want my life to look like after this? Do I return to the same life? Do I stay with the same career in the same job? Do I return to training and aim to compete again? Do I stay where I was? The only answer I do know is that I need a life with as little stress as possible that’s as true to myself as possible.

You see it’s just not as simple as being better. Now I’ve had some time to think on it I know the answer to my therapists question. Yes. Yes I am scared of getting better. That’s not to say I don’t want to, but it’s still a scary prospect because it’s another long journey with many hills to climb and battles to face. I’m terrified of staying where I am in this constant state of suffering and I am scared of getting better. But I know which fear I’d rather face.

I’ve been trying to write for the last few days but I just couldn’t find the first word to put down. But after therapy and talking through what I am feeling I now know the first word that I couldn’t find.

Desperate.

I am desperate. Desperate for a cure, desperate to be seen and heard, and desperate for help. Because I’m also desperate for my suffering to end. I was at the doctors for an unrelated matter and I was sitting in the empty waiting room, with its clinical decor and bright lighting, and I was picking the hell out of the skin on my fingers. Shaking, sweating. I noticed and held my hands together and next thing I know I was picking again. In the moment I just had this overwhelming feeling and this voice in my head screaming I need help, now.

In truth I’ve been struggling a lot more than even I was aware of. With suicidal feelings appearing more often than I’m comfortable with. I have therapy 3 times a week, and I’m taking mirtazipine. But my dose hasn’t change since I started it nearly 2 years ago. And despite the cocktail of drugs I have to take I absolutely hate taking more. I take the drugs I absolutely must to help me cope with my pain but anything additional I am really against. So anyway, on my way out of the doctors I arranged a call with a doctor to discuss my dose and whether all my medications are ok and safe together. See no one reviews my medications and my neurologist doesn’t check what else I’m taking on top of what she’s prescribed. My GP and other doctors generally refuse to deal with issues that arise due to my medications because they don’t understand my medication regime or know anything about my condition, but they also don’t try to understand and choose not to know. I am largely unseen and unheard. And the phone call with the doctor just reminded me of that.

The doctor called and said ‘how can I help?’ I informed him that I am having real issues controlling picking at skin around my hands and scalp, I’m having suicidal thoughts or feelings daily and while I’m in therapy 3 times a week I feel like I need more help to try and make it easier for me. I asked him if my medications were ok together and whether I should consider increasing the dose of my antidepressants. So to me what I said was a clear cry for help, right? All he said was my meds are often prescribed together and so not a problem and we’ll double the dose and see how I get on. ‘I’ll send those to the pharmacy, have a good day’. No ‘are you ok?’, ‘are you safe?’, ‘is therapy helping?’. Nothing to acknowledge that I’ve just told him I’m suicidal and in need of more help. Just another doctor leaving me unseen and unheard.

But that is my reality and I am struggling. I’m struggling to believe in any treatments, I had one good day and have had nothing but shite since. I know a part of finding a cure is to go through these medication trials but I feel so deeply that I’m just being sent aware to suffer for another 3 months. Always another 3 months. My neurologist wasn’t hopeful for my treatment to work, which of course means I’m not hopeful. I’ve also done plenty of research to know that there is little hope in it. But what there is is plenty of research into studies and feedback from others with this condition to say that the occipital nerve stimulator implant is the most hopeful option for me. And each time I’ve been sent to the neurosurgeon to discuss the implant and I’ve been sent away to try different options. Different options with slim chances and in turn prolonging my suffering.

I am not coping. I can put on a good attitude and hide it when I absolutely need to to protect my true self and state being seen, but I also want to be seen. It’s very conflicting and that conflict is constantly battling inside of me with every interaction I have. I don’t want to pretend I’m ok or say ‘it is what is is’. But it’s my autopilot. I find it so hard to ask for or accept help, and I find it very hard to say what I’m really feeling.

When you see someone you say ‘hey, how are you?’ It’s something that’s been ingrained in us as an acceptable greeting. But do we mean it? Or is it just an empty gesture? Something where you inwardly groan when someone says ‘actually not great’?. That’s how my mind views it. That’s not to says when someone responds to me saying they aren’t ok that I inwardly groan, because that couldn’t be further from the truth. But it’s what my mind tells me will happen if I tell the truth. Because how can someone respond to me discussing my suffering? It’s overwhelming for me to acknowledge it and support myself with love and compassion. We are taught to ask how someone is in greeting, but are we taught how to respond? To truly hear what someone is going through and form an appropriate reaction or response? I don’t recall ever being taught how to respond if someone says ‘not fucking great’. It’s not in the script we’re taught. I’m suffering and even I’m not sure how to respond to someone else suffering. I don’t even know what I want to hear back from others. If I don’t know what I need to hear how can someone else know?

I feel like I’ve gone down a rabbit hole. But I asked for help from the doctors and felt unseen. But I then had a very productive therapy session Friday afternoon. A session where I was able to talk and pause and talk as and when my thoughts made themselves known and I could then voice them as they appeared. It meant I was able to truly see the thoughts and feelings I have but haven’t been seeing. It meant I was seen and heard by my self and my therapist. It meant I could come out of therapy and talk to my mum. And then my friend came over and I could be honest with her too. My therapist told me the more I voice it, the more I expose it, the better it will be, the less scary it will be and the safer I will be. Because these thoughts and feelings are fear.

Fear of not finding a cure, fear of never having a meaningful existence again. Fear of my suffering having no end…unless I end it. Because I am desperate for my suffering to end.

That terrifies me. I feel my spirit has so much fight and life and energy left, but it’s trapped in this broken vessel. I don’t want to be trapped in a broken vessel anymore. But it would be an injustice to give up now. It could be a waste.

We did a inner child exercise during my therapy, and my inner child told me ‘don’t give up over what could turn out to be just a moment’. See if I find a cure within the next year and I live until 90 then 2 years out of 90 will be nothing but a small moment. Though my suffering has been going on for far longer than 2 years I view the real suffering starting the moment I got my Pfizer vaccine. So 2 years would be but a moment. 2.2% of my life.

So I guess this is my journal to myself to ask and accept help. To be open to receiving and seeking. To stand up and fight for myself. To demand that my suffering no longer be prolonged by these near hopeless drug trials. Someone called it dartboard medicine which sums it up perfectly. Well I am done with throwing darts to decide my fate. My current drug trial is supposed to be 3 months, but I will do one more jab and if that makes me worse again I will refuse to continue further. Because I cannot cope with anymore suffering. So I will write a letter and inform my healthcare providers of this decision, I will back it up with a letter from my therapist and I will demand to be seen and heard. I will promise to myself that I will fight to get through this suffering, I will fight for its end but an end that isn’t the finality of my existence. Rather the end that means I get to reshape my life how I wish to, with a clean slate and better health. Because prolonging my suffering while doing these drug trials is no longer a safe option for me given the mental toll it is taking.

I am not safe.

That’s such a terrifying realisation and even more terrifying to say aloud, or write. But I will see and nurture myself with more compassion now, because I’ve been giving myself a pretty hard time over something that isn’t my fault. This entire situation is so unfair. It’s unfair that I ever got this disease to start with, and it’s even more unfair that it’s suddenly brought my life tumbling down around me. This is not how I saw my future, and now I can’t see one at all. And that will be my motivation. To fight to see my future and all the possibilities that could and should be.

Since my CGRP inhibitor jab Friday I’ve been feeling truly awful. It’s amazing that when you think you’re suffering more than you could even imagine, it still manages to become worse.

And then I woke up today, 5 days since my jab and my pain is somewhere between a 6-7 out of 10. For reference, I haven’t had pain below a 7 since February. But I don’t intend on jinxing it, it could just be a random ‘good’ day, and I’ve spent the last 3-4 weeks mostly bed bound. Especially since the jab so perhaps it’s just I’m well rested and so I’m coping better for a day. Tomorrow will be the decider of course.

But it’s nice. I say nice, it’s horrible. I’m still in uncomfortable levels of pain, not feeling up to doing anything but it’s the best of the bad. Prior to Botox I was able to sit and do puzzles on these ‘good’ days. I know, I sound like a little old lady. But finding things that I have the mental capacity and agility to do without significantly increasing my pain is near Impossible. Reading my kindle on the lowest brightness with inverted text is the one activity that has zero bearing on my pain. When I’ve been able to do puzzles I only manage about a couple of hours tops before the increase in pain stops me continuing. But while I sound like a little old lady, it’s finding things like these which make some days a little more bearable. Something to fill my time, break my monotonous days up a little bit. So if that comes at the price of reminding you of your Grandma then so be it.

Because I’d love nothing more than to fill my days with activities I love. Powerlifting, track days, restoring TVRs, hiking for hours with Bella, picnics or bbqs with friends. I’d give anything to be able to fill my time with these things. Because while I’m going through all of this and I’m unable to do these things or work of have any meaningful form of existence all I can think of ‘Christ I need a holiday’. Like when you’ve been so busy with work and you just need a week or two to switch off. I need that too, but aside from my empty bank account, if I did go on holiday my troubles would still follow me. It would just be the same shit in a different location. So that’s my plan when I get better, is to actually take a holiday somewhere, preferably either my plane or somewhere in the UK with Bella. Because I rarely did holidays, even before I got ill. In my adult life I’ve taken 2 holidays. Though thankfully a couple of weeks before my vaccine was the second of those holidays where I spent a week in Scotland with Bella, my brother and his family. Now more than ever I know what I want my life to look like coming out of this. It will consist of taking every moment and opportunity to fill my heart with joy, because I now see it’s the small things that matter to me.

I did try and have a normal day in May. I tried my best even. I turned up at Castle Combe to see old friends at a TVR track day with my dad. Obviously I didn’t have a car, but I tried to enjoy the experience none the less. It was incredible but absolutely not worth the aftermath. I was having a terrible day so I bowed out of going and my dad went alone. As I was sitting home feeling sorry for myself with a heavy dose of FOMO I snapped and grabbed my keys and left without giving it a second thought. Just a quick prayer to the powers that be that I could do the drive to the track.

I surprised my dad by walking into the cafe and joining him for lunch before we did our usual tour through the paddock catching up with old friends. A friend called across the paddock and asked if I brought my lid…I hadn’t. So he grabbed a spare from his van and grabbed me a passenger band and we headed out. It was exhilarating and fantastic to be thrown around the track until the break pedal was getting a bit too long. It’s never the same as being the driver but it was fantastic. I was like a child fulfilling a make-a-wish dream. But if I felt shit before I felt horrendous after. A terrible and painful mistake that I will probably remember for a long time for the immense joy it brought me and how alive I felt in that moment. Thanks Danny Birch 🤙🏽

Track days and car meets are a passion that both my dad and I share. Fixing and restoring cars, slinging them round tracks and going on European track days tours. And of course spending hours going through cheap tool stands at various car shows looking at the same tools that generally end up being a one use disposable hunk of junk. A once regular event on my calendar that turned into one of my many pipe dreams. Like all my old hobbies and interests.

My pipe dreams were once a reality and I know some day they will be my reality again. Except when that happens I know I won’t take a moment for granted. I will also probably cry tears of joy at regular intervals during these activities. Because when they happen again they will mean so much more to me than I ever thought they could.

Friday I started a new experiment. It’s how I refer to my treatments. As there is no cure for my condition, and the only drugs it’s known to respond to no longer works or is tolerated by my body. So we are left playing a game of battleships.

E4 – nerve blocks x 3

B2 – Lamotrigine

F6 – neurosurgery

A7 – pregabalin

B5 – Botox injections x 31

E1 – CGRP inhibitors

A2 – nerve stimulator implant

Fridays experiment was E1. My first self administered injection which is to be repeated every 4 weeks. The nurse said patients tend to see signs of it working around the 3 month mark…the patients she refers to are migraine sufferers. The condition this drug is designed to treat, not Hemicrania Continua. I should also add, I’m only on a 3 month trial. I know what you’re thinking, what a thoroughly thought out plan.

As with every single treatment I’ve tried, it’s immediately made my pain worse. My pain was significantly increased following neurosurgery in November and I failed to have as many lower pain days. When this started in June I’d occasionally get days where my pain would be between a 4 and 6/10. Those levels haven’t been seen post surgery. The lowest I got was 7/10 once a week roughly. Then there was the Botox in May. Since then I’ve had a total of 6 days where my pain has been a 7/10. So a drastic reduction in ‘good’ days.

But as with most things I start, my head immediately reacts, now I just have to wait (I won’t hold my breath) and hope that this is the treatment that causes my head to react positively. To see a downward trajectory in my pain levels and the consistency of them. I think injecting myself every month sounds a darn sight nicer than the gruelling surgery required for an implant. Though studies suggest that is the experiment that has a high chance of success.

To be honest at this point if the implant has even a 50% chance of working I’ll walking into that operating room with bells and whistles. The truth is that while I’ve spoken about my struggles with finding and holding onto hope throughout this whole journey, knowing that for 6 whole years I had this condition managed gives me hope. My pain was at a level that could be ignored and accepted, a level that let me lead a fulfilling, normal and exciting life. One where no one knew I had this condition, or the stack of pills I popped daily to keep it that way. Because I had that for so long, I know it’s possible. That it’s something that can be achieved and I won’t stop fighting until I have that back.

See having a rare disease like this is only half the battle. The battle that I and so many others with this condition have to fight is with the healthcare system. Our battle isn’t really with the many consultants or neurologists we deal with, though sometimes they bare the brunt of our frustrations. The real issue is that such a rare condition lacks incentive. As a result, there are very few studies and very little research into what is ruining my life, and others. So there’s no cure, there no knowledge on what causes this condition. As far as the healthcare system is concerned it’s a pain that just is. They found one drug that it likes to respond to, that is horrendous and damaging and that so few peoples bodies are even able to tolerate. But that’s them done for the most part. Outside of that option it’s back to a game of pulling treatments out of a hat and seeing what does or doesn’t happen.

So here’s to my next experiment. May you be the one that’s gets me my life back. May all the experiments I endure go some way to helping those that have the unfortunate experience of following in my footsteps.

I guess at some point I had to stop waffling in other journal entries and write this one. The tale of the condition that brought my life crashing down. That stopped my journey dead in in tracks, before it started retreating.

That’s how I view it, whether that’s wrong or right I don’t know. But it’s taken me back a fair few steps. See no one who’s lived a full existence of independence expects to suddenly be a child again. A 29 year old child, back home with their mum, who’s back to mum duties of caring for their kin.

It started in December 2015. I was working full time and studying on the side. I was also training though not yet competing. I was at my desk, engrossed in designing reinforcement for units in a big project we had on. Then the pain started, just 30 seconds of it roughly. But by the end of that 30 seconds I was a shaky, sweaty ball of tears. Gone as quick as it started, almost having me believe it was my imagination. It started happening more. More frequently and for longer periods. By early January it was permanent. Probably not much different to the levels of pain I experience now and also just on one side of my head.

In my early teens I started getting migraines, which the doctors assumed was what was happening to me now. But MRIs in my teens also found a cyst on my pineal gland. So off I went for more scans to find out whether something had happened to the cyst to be causing my new pain.

All clear, the cyst was as it had been previously and so ruled out as the cause. I trialled several medications, amitriptaline, topiramate, atenolol. The list goes on with a few others I can’t remember. We settled on tramadol. The only way I know how to describe what this did to my pain is to refer to a childhood toy. Most probably had one. That strange plastic spiky ball, made of lots of little parts, that could be pulled out into one ball or brought back into the small spiky thing. That’s what tramadol did to my pain, it took it from this big ball and collapsed it down to a spiky bastard. Far more easier to cope with. The downside was to reach that point I had to take the maximum dose. You can probably guess how useful that made me.

I was high. So fucking high, all the time. But I pushed through everyday at work and study. My work was shoddy, my assignments written in a drug fuelled haze. Eventually we paid to see my childhood neurologist privately due to a near 2 year wait to see her via the NHS. Her secretary have me her deepest apologies that her next available appointment wasn’t for 2 days. HA!

Anyway she tentatively diagnosed me with Hemicrania Continua. There’s no reason or cure. One day it just appears, one day it might disappear with no reason. But that it was usually seen in older patients, that to find someone so young with it was unseen by her before. It’s also know to respond to only one drug, Indomethacin. So provided a trial of this showed significant results then my diagnosis would be locked in.

So I started to process of weaning off the tramadol and then started the Indomethacin. And my pain was nearly gone. As I said there’s no cure, only this one drug to manage the pain. So my pain was around a 1-2/10. Much better, thank you very much.

I still had flares, where my pain would suddenly increase, and I learned to increase my medication accordingly till the pain was back under control and then reduce it back to my maintenance dose. Though the drug itself came with its own complications. It’s the worst of the NSAIDs. Causing me horrendous reflux and gastro pain. It even caused me a blue light trip to a&e early on due to vomiting blood. So then I had drugs to help protect my insides from its damage. And I continued like this for 6, what I see now as, blissful years.

Then I had the Pfizer vaccine on the evening of June 17th 2021. Looking back I wish I’d done some research. Everyone by this point knew the dangers of the AstraZenica vaccine, but the Pfizer was deemed safe. If I had done some research before I’d have known that it often exacerbated existing headache conditions. But I didn’t so there’s no point looking back and dreaming of the what ifs.

June 18th I woke in immense pain. As usual, I increased my meds, and kept increasing my meds and then increased them some more. But it wasn’t working like it always had before. My maintenance dose was 25mg and I’d increased it to 200mg. I paid privately to see my neurologist who prescribed me Lamotrigine. It’s an epilepsy drug that apparently for whatever reasons sometimes helps. It didn’t. On the same day she also did a nerve block on the side my pain sits in, the right. This was into the occipital nerve at the back of my skull. This didn’t work either. We waited to see what would happen. Nothing.

Back I was receiving another 2 nerve blocks, this time bilateral. She also referred me for a fresh set of MRI scans and referred me to a neurosurgeon to discuss a nerve stimulator implant.

Again the nerve blocks didn’t work, and this time they increased my pain a little more. September I had my scans and an appointment with the neurosurgeon. I found out he had no intention of going straight to the implant, instead he wanted to try pulse nerve radiofrequency lesioning. Basically a one time nerve stimulator zap, bilateral, to my greater occipital nerves and my right trigeminal nerve, while also flooding these areas with local anaesthetic. All done key hole. I also found out I have mild chiari malformation.

So I said sign me up. I was warned there was a chance it might now work, or a chance it might make me worse or a chance it might work first time. Or also a chance he’d have to repeat it again. Lots of chances all in. So I had the operation November 11th. By this point the increase in my Indomethacin had increased my gastro issues and also caused bronchospasm which was causing me great difficulties breathing some days.

The operation came with a final warning that the recovery could be up to 6 weeks of increased pain. He was right, it absolutely did. It was awful, all the way up to Christmas. I was mostly bed bound since June anyway. Generally I’d wake and take meds, sleep till lunch where I’d get up and have a cuppa and some meds. Then I’d sleep till dinner, eat and take meds and then sleep through the night. Lather rinse repeat. I’d have some good days where my pain was a 4-6 out of 10, but following the op I had no good days at all.

I couldn’t cope, and I was getting fobbed off by my doctor surgery who wouldn’t/couldn’t deal with me because they didn’t know enough about my condition, surgery or medication regime to help, despite me saying I could no longer afford to privately find my treatment. My op was on the NHSs wallet, but everything else was on mine. Nerve blocks, appointments and even just phone calls cost me every time. So following a long demanding email to everyone involved in my care so far I got an NHS appointment with my neurologist in January. Indomethacin and Lamotrigine were to be stopped and I was prescribed pregabalin.

I eventually started this in February and I started to have hope. Light at the end of the tunnel. Something was working! I was having more good days, less days spent in bed. Unfortunately, it was short lived. Suddenly my pain blossomed…again. Like a rollercoaster, when you think you’re at the end then you hear the clicks of the carriage rising towards the sky once more. The difference being I love rollercoasters. I’m an adrenaline junky, always have been.

So once more I paid for an additional phone call to my neurologist in March. 16 minutes and £180 later I was told to increase the pregabalin. Which made me incredibly high and gave me significant cognitive issue, yet did nothing to reduce the pain. She also sent a letter to my neurosurgeon to expedite my post op follow up.

Having had enough of paying anymore I started emailing my neurologist, and was advised to reduce the pregabalin back down as there was no point in being high if it didn’t help the pain. So I reduced the dose and waited to see the surgeon at the end of April. In the meantime I worked on trying to repair some of the cognitive issues. Such as my wonderful neat and free-flowing handwriting. I was suddenly unable to control a pen, writing at the level of a 5 year old. The memory, and communication issues are still there. Some things I guess will have to be dealt with when I can finally stop these drugs.

Anyway I digress. I saw the surgeon, and you’ve probably all read my journal entries discussing his ‘3 lots of hope’. So in May I had 31 Botox injections around my face, head, neck and shoulders. Thankfully these were symmetrical! Before Botox I’d maybe have one day a week where my pain would drop to a 7/10. A ‘good’ day. Post Botox I’ve had a total of 6 ‘good’ days where it’s dropped to a 7/10. So Botox was and is a no from me.

I’ve just started the next treatment. A CGRP Inhibitor injection. A fairly new treatment for migraines. When I saw my neurologist for my Botox she said there’s not a lot of studies on it’s use on Hemicrania because it’s not really used for it, because it often doesn’t work. So of course I’m full of hope with this new treatment. I have to be because my third and final option sounds horrendous and I would have hair shaved and a Frankenstein scar. Jokes aside though, I really do have to have hope that something, somewhere along the line, will work. That suddenly I’ll have pain at a manageable level and I’ll be writing these journals detailing my rehab back to normal life. Because that’s what I dream of now.