Category: Uncategorized

I wrote yesterday a little about how I’m alone in my journey. Today I feel I want to write a little more on that. I don’t want what I say to hurt others, particularly the feelings of those I care most deeply about or who have shown unwavering support, but I fear that it might have already, or might do so. I don’t mean for it to happen, I know I’m in a darker place and it’s not intentional, but I promised I’d be honest in my journal and honest with myself and others.

I feel, or rather I know, there’s a part of me that in envious and perhaps sometimes resentful of those around me. I want to make it absolutely clear that I would never and will never wish my situation or my condition on any other person – whether I know them or not, whether they are deemed the worst of human kind, I just wouldn’t. The resentment and anger is also my responsibility and I do not wish for anyone to fill their life because I’m jealous. I’m the biggest cheerleader for those around me and these feelings I get do not change that. I will always wish for the best for my people and push them to be their best selves. I’ve said before how grateful I am for the support I receive, for the love and patience shown to me. That it is what keeps me fighting, keeps me putting one foot in front of the other. And that is true, because without that, without them, and without Bella, I honestly don’t think I’d have anything to keep me going – anything to make me want to keep going. I know that’s heavy, but it’s my truth.

That being said, my journey is my own. A path only I can walk, others can give me a gentle shove in the back to keep me moving forward, but they cannot walk it with me. They have their own path to walk down, for some it’s a path into growing a family, others a path that will lead them down an aisle in a beautiful white gown. Everyone’s path is different and no one else can walk it – it’s exclusively theirs. I think that’s where my resentment and envy lies. What I see is people giving me support and love, brief periods of time spent together, drinking coffee or sharing a meal. Then we go back to our respective paths. When that happens what I see is them moving forward, growing and blossoming on their path. Others get to go to work, share homes with their partners, go out for dinner and drinks. They have a beautiful future ahead of them and they get to plan and prepare for it. Their path to me is bright and beautiful. I on the other hand, upon returning to my path, am faced with a blank darkness. No plans, no future.

I think what I’m saying is they get to keep moving forward. That’s not to dismiss anything other people are going through. I believe the saying ‘walk a mile in my shoes’ because no path is easy. An easy path would be terrible for anyone, without struggles and stresses there is no growth. But I’m jealous that they get to go to work, I’m jealous they get to share their journey with a partner, walk their dog and enjoy life on a whim. They can plan holidays, parties, family gatherings and futures. As I said yesterday, I’m stuck in no man’s land with no idea when to expect appointments to discuss next steps in my treatment. I don’t get to continue with life while I wait for these, because my condition prevents that. I don’t get to go to work and moan that it’s only Monday anymore.

I keep finding myself thinking about New Year’s Eve, and I go to pick up my phone and find out what everyone’s plans are. But then I think I can barely keep my eyes open after 9pm and when I drink it makes me high. It sounds silly, but I’d love to have a few tequila shots and let my hair down. But then the fear of how that might react with my pain or my medication stops me. Then I think fuck it, it’s one night a year, I deserve to let my hair down and party a little! But what if I get a hangover? What if there’s a bad reaction to my medication? What if the pain after is unbearable? What if I fall asleep? What if no one is interested in a half-arsed, might fall asleep, might end up in a state, New Year’s Eve party?

I know I won’t find out unless I ask. I also know that I don’t know what tomorrow looks like, so making future plans is difficult because I hate nothing more than the guilt of bailing on someone. I do have plans, a birthday dinner in a few weeks. Honestly I’m beyond excited for it. A night with the girls, out the house, celebrating another year of knowing a wonderful woman and all her achievements. I also know that I have to plan on the defensive, that I might have to take extra meds if it’s a bad day in order to make it. That doing so means I shouldn’t risk having a drink. That the days after will likely be uncomfortable at best. This is a worthy consequence, and so I’m just excited. The rest is background noise. But I wish that background noise wasn’t a part of my life or thought process anymore.

I’m a little fed up I guess. I’m fed up of only being able to read, fed up of this house, my room I have no energy to tidy and having nothing else to fill my time that doesn’t come with a consequence. I’m bored of being bored and I’m fed up of my time mostly being spent waiting for someone to be free to spend a few hours with me. I wish more than anything I could just bundle Bella into the car and drive somewhere new and explore for a whole day. Yet I know most days I can’t even walk in the fields opposite the house. I feel the best years of my life are being wasted and I’m powerless to change it.

I’m in a bit of a rut at the moment. I can’t seem to find the healthy balance my body and soul needs. I don’t think I’ve been able to find a ‘balance’ since this all started but I’m struggling now more than ever.

I’ve said in a recent post that I’m finding myself more aware of my feelings again, particularly loneliness. Loneliness is a very complex emotion. See I’m not alone, I have support in every corner, and for that I’ll always be grateful. But despite the support this is my battle, and I truly feel like I’m walking into it alone – because for all the support I have, no one can actually help me. And I see how devastating that it for those around me, I see how much it hurts them to see my pain and be powerless to take it away. Nevertheless, their love really is what’s giving me the power to keep moving forward in the journey. Alone, but powered by the love, empathy and strength of everyone who’s supporting me.

I’ve been trying to battle the loneliness, or more like distract myself from it, by making sure each day I do something or see someone outside of my home. The trouble with that is it means I’m driving a lot more, which is not something I should be doing. I’m not dangerous, I’m not driving high, but I’m aware that my pain can often be distracting and driving without full concentration isn’t advised. So then I have to put so much more energy and focus into ensuring the road has my full attention, which obviously leads to more pain and exhaustion. It’s silly because driving for me is so relaxing and more of a hobby than a convenient method of commuting. But that was in my old life.

Anyway, excess driving aside, I’m struggling to stop and rest, particularly if I’m home alone. So I’ve been out more, doing more, seeing more people, trying to do some food shopping where I can. And despite my pain being a 10/10 for over a week now I just can’t fucking stop. When I try it’s not resting, I’m led there feeling my whole body and mind trying to fight to stay away from the darker places of my mind. So I’m not resting, it’s purely me restlessly led down. Then I give in, get up and force myself to leave the house and do something.

I’m so consciously aware of how easy it is for me to slip into a darker place, a deeper state of depression, and that scares the fucking shit out of me, because I know how hard it is to come back from. I also know how little fight I feel like I have left in me to do so. So I get up and try to stop that slip from happening. It’s a strange place to be in – knowing that I am inflicting more pain on myself by keeping busy and deepening my state of exhaustion. But I just can’t afford to slip.

It’s also strange that there isn’t anything in particular that is on my mind. My therapy is down to 1 session a week, because I don’t really have a lot to talk about. I enter my sessions not knowing how we’re going to fill the hour, but we do. We always have done, even if it’s just chewing the fat or meditating. But it’s difficult not having anything to divulge to help get me further away from this darker place I’m fighting to avoid. Because everything to say has been said. It’s just the result of my entire situation – my pain, my suffering, my finances, my boredom and loneliness. It’s all been said. And there’s absolutely fuck all I can do about it all.

My neurologist took a month to send a letter to my neurosurgeon requesting a consultation for me. The letter stated that my last two treatments didn’t impact my pain at all and that I’d had ‘partial positive response’ to Indomethacin since I saw him in April. I haven’t taken Indomethacin since January and can’t due to medication I take for my joint pain. And the last two treatments had a negative effect on my pain. I haven’t heard from the surgeon, I haven’t heard about my referral to the pain clinic. Everything has stalled and I feel I have nowhere to turn. I’m also still carrying anger and resentment towards my neurologist about the letter, it’s inaccuracies and its lateness, despite receiving it a month ago. I should have had time to see the surgeon before the year was out and she should have ensured what she wrote was at least accurate.

I’m also mad because I was reading back through my medical correspondence while putting together evidence to claim for the vaccine payout, and I saw my letter from my neurologist in July last year. Post vaccine my pain was between a 4-8 daily, generally sitting at a 6. I’ve spent 18 months trying to get a grip of my pain and all that’s been achieved is make it worse. I know I’m grateful for the NHS and the resources spent on trying to help me. Let alone what I and my dad have paid for each private phone call or appointment with my neurologist before I got her email address. But I’m also so fucking disappointed in the system at the same time. I feel so let down that I’m in a worse condition and I’ve had to fight and damn near harass my neurologist to get the ‘help’ I have received. That even now a blatant false statement was made in that letter – a statement that the surgeon might see and deem me a low priority case because apparently a medication I cannot take is helping me.

Like I said, I’m carrying a lot of anger and resentment which is not helpful in anyway. It doesn’t change things. It doesn’t fix me and it’s detrimental to my mental well-being. But if I let it go, if I accept that this is where I’m at, I feel like all the fight will leave me. I can’t afford for that to happen. So no, there’s nothing new to discuss in therapy, because nothings moving forward. I’m in a state of limbo, battling to keep my head above the water. I think that’s the best way to sum up how I’m feeling – I feel like I’m drowning. Everything has stopped moving forward and I’m stuck in no man’s land with no idea what or what is coming next. How long must I keep treading water trying to keep my head above the waves?

Do you ever wonder if something that affects you, affects others in the same way? Well, I am.

So I bought a new duvet – which in itself isn’t something I like to do. I have to have a ‘silent’ duvet, not one of those duvets that rustle. It can’t be feather, because they don’t smell right and the feathers move. My duvets need to be uniformly stuffed, so as there is no bunching – just an even distribution of the weight. Also feather ones always rustle. I’ve also never used anything above a 4.5 tog, loaded with a blanket or two when required in the winter. Said blanket or two hasn’t been cutting the mustard so I had to cave and buy a 10.5 tog, non-rustling, evenly distributed duvet.

Anyway, then comes the second hurdle. When I was a kid my parents bought my sister and I 101 Dalmatian duvet covers. It ended up that they both became ‘mine’ because I couldn’t sleep with a different cover. And I did mean couldn’t and not wouldn’t in that sentence. It ended up that I used these covers well into my teens because of this. In case you hasn’t noticed change in my routine or just change in general isn’t my strong point. It’s like a comfort blanket. But I’ve carried this issue into adulthood. Perhaps once every 2-3 years I buy myself a new duvet cover set. It’s not an easily made purchase, it has to feel right and look right for me to even consider the purchase. Once I buy one and commit to using it that is my only duvet cover. In my mind at least. The previous set gets moved into my bedding/towel storage ottoman, which in truth is actually their final resting place.

I ensure I have my bedding washed and dried within a day and usually find myself making my bed right before I get into it. Because I won’t indulge buying two of the same set. That would be a waste of money because I know I’d only use one of them. I’m the same with sheets. Previous victory purchases get sent to their grave in the ottoman and I simply wash and use one sheet. Despite having around 4 others in the ottoman.

The specially selected duvet arrived yesterday afternoon and I really wanted to use it. Unfortunately I didn’t want to sully it by putting on my duvet cover without washing it first, so I opened the ottoman. I pulled out my previous duvet cover, exhumed it if you will. It didn’t feel right but I really didn’t want to wake up cold, or worse, severely overheated after falling asleep with my heated blanket on again. So I gave in and put my new duvet with my old cover on the bed, ready for a nice warm sleep. I think I woke, that I remember, at least 5 times. I just didn’t feel right or smell right. I felt like I wasn’t in my bed, I wasn’t comfortable and had this really uncomfortable sickly knot in my stomach. I used to have it if I tried to have sleep overs – they’d always end in phone calls to my parents late at night to collect their crying daughter because she couldn’t sleep because it wasn’t her bed. So she didn’t feel safe and comfortable. It was this all over again, minus the tears.

And I wonder if I am the only one that deals with this? It does get worse too. My sheet has to be TIGHT. No wrinkles, no loose material, no folds. I have a sheet strap, which is essentially 8 stops of elastic with clips that pull the sheet right underneath the mattress. I can also feel if theirs is the smallest spec of something too and I have to get up and brush down my entire bed until I’m certain it’s clear. Also loose pillow cases are a sin. All that loose material around my face trying to suffocate me – not on my watch!

I know this isn’t my usual stuff, but I said I’d share what I write and what I write is often a surprise to be. But it’s also a way for me to dig deeper into my mind. I often find more comes out by writing and then I can take that to therapy. I don’t know if this belongs in therapy, but apparently it’s on my mind after a broken nights sleep.

I haven’t written once in my journal since last week but I had therapy yesterday and so I figured maybe it was time to put some thoughts down.

It’s been a rollercoaster. Last Wednesday I found Bella had a couple of tumours in her mouth, one covering a tooth and so she wasn’t interested in eating anything other than rice. My vets couldn’t give me a set price for the operation. She needed a scale and polish and possibly an extraction or two and so the cost was going to be unknown. So I decided to take her to animal trust in Shrewsbury which was roughly a 3 hour drive, but meant a known cost. So we did that Monday. Somehow I managed to leave at 5.15am and survive the drive alone, with Bella protesting from the back. I thought of booking an air bnb but decided that if I was to drive back the following day when I’d already be feeling terrible I’d just be prolonging my suffering. So mind over matter kicked in, as it did for the first drive and I finally got home just before 11pm. And I am still suffering, which was totally to be expected. And for Bella, it was totally worth the consequence. Her teeth are gleaming and the tumours were resected as much as possible and she’s eating again!

But I’ve also noticed, aside from feeling like poo, that I am becoming a little less detached. By body is telling me what I’m feeling again, albeit gently, so I can acknowledge and act accordingly. For instance, I am exhausted and in a lot of pain. But I am also aware I am in a state of restlessness and feeling a little lonely in my suffering. So while my body and head are telling me to stay in bed an wallow in self pity, I’ve heard the restlessness and loneliness warnings and acted on it. I took my dad for lunch Tuesday and spent some time with Darc before therapy yesterday. Little things to break the feelings of being alone. More like just a distraction but it’s working. Today I have dinner plans with Est after some time cuddling Bella now her breath of death is gone!

I appreciate my body and mind for allowing these feelings to be known again. It’s these little warnings that give me a quick boot up the arse. In my situation it is very easy for me to lean into the darker spaces of the mind and soul. It’s easy to say to myself it’s ok, you’re justified in how you feel. And it’s true – the dark feelings and thoughts are justified. I can hear them, respect them, and choose to do something about them, regardless of how much pain I’m in or how exhausted I am. I choose to ensure I feed my soul with the good stuff to help balance the darkness of my mind

And while that was a little essay of moaning about having to push beyond my limits on Monday I must also remind myself that it was a victory. I got Bella the care and treatment she needed within less that a week of finding the tumours. I managed to pull through and give her what she required of me on that day. I did that. I didn’t do the sensible thing and ask for help. Some how with Bella I have always managed to push aside my own suffering to fix hers. And I did. And so that was a fucking tremendous victory.

My car required rear brakes and so to help me with the surgery costs, my dad offered to let me use his car to take Bella to Shrewsbury. He then also offered to pay for my brakes, and surprised me by also getting the car serviced while it was in. I’m truth I was drowning in panic when I saw the vet and realised I’d have to use the money put aside for another impending operation to Bellas eye to now fund a totally different operation. Choosing to use this money was not easy, I felt so conflicted because it was for vet bills but just not this particular one. But that’s the thing with having pets – like us surprise health issues crop up but they don’t have the NHS. They rely solely on us, their family, to protect them at all cost. Dads offer of help truly eased this panic, because I then didn’t have the added pressure of using even more of her vet bill money on a car. A car that I shouldn’t even have anymore. It was a chain of family helping family. I, jumping to Bella’s aid in whatever she needs and my dad for then easing the burden on me.

There was also the added bonus of getting to spend some time with my brother, sister-in-law and their children on Monday. Their friends opened their home to me, a complete stranger, so I had somewhere to rest and recharge while I waited all day to collect Bella and travel home again. The wonders of human kindness shown to me that made my day just a little bit easier and therefore allowed me to be able to drive home again on the same day, though they did offer me a place in their home for the night if I needed it.

Humans truly are wonderful and this last year and a half has shown me just how true that is. In my time of need friends, family, strangers and acquaintances have shown me kindness, love, support, generosity and selflessness in whatever way they can. Purely from the good of their heart, to make my journey of suffering a little brighter or a little easier, even if just for a moment.

I’ve just returned home after taking Bella for a walk into the field. I didn’t feel like it, my body protested with every step but Bella needed it. And it turns out so did I.

I’m exceptionally fortunate to have acres of open fields opposite my front door. There are plenty of entrances and paths between fields that allow the walk to be as short or as long as I’m capable of. I got back from my fortnightly job centre appointment, grabbed Bella and headed straight off.

It’s sunny here today, though what we British call a winter sun – paired with a biting wind to push you onwards.

It was beautiful. The low sun glistened off the blades of grass, still wet from earlier rain. I wore a coat, undone, with a thin tee so I could feel the wind whipping against my skin and through my hair. A gentle reminder that I am alive and still able to experience the privilege of nature. Taking deep lungfuls of the fresh, unpolluted air that smells of rain, wet mud and trees.

I found an area that was mostly dried by the sun. A perfect spot for me to kick off my boots and socks and feel ground and the grass beneath my feet. All the while watching Bella. In her element, kicking up as much grass as she could, with her huge toothy smile and her face turned up to the sun. A quick sniff and scout until she found another patch of long grass to kick up as she’s always felt is her duty.

I even got to watch a low flying Hercules, which from my angle was dusting the tops of the trees a few fields along. Listening to it hum alongside the birds signing soprano from the surrounding trees. Hearing dogs bark off in the distance, out of sight. Acknowledging in that moment that the whole field around me was just mine and Bellas. A great open expanse of beautiful greens and ambers all to ourselves.

My blog can get a bit dark as are many of my days. But I wanted to share this walk with my readers, and my future self. A gentle reminder that you need only step into nature to feel deeply cleansed of whatever burdens you. Even if only for a short while. A moment where you feel alive and vibrant, the energy of the sun and the wind doing it’s very best to feed your soul. You’d be surprised how grounded kicking your boots off can feel too, once you get passed the thought that a dog has almost certainly peed on the grass you’re wriggling your toes in. Push that thought aside and just breathe deeply of the fresh, unpolluted air and know that in that moment you are safe, you are ok and you are surrounded by things, and Bellas, to be grateful for. I watch how carefree and present Bella is in these moments and I will always try to practice the same.

Today wasn’t a walk. Today was a meditation.

It is a burden, I’m saying, to live where I live.

Tess Gallagher

This was a word I used in therapy last week to describe how I feel about my condition and my situation. It was towards the end of the session and I told my therapist I’d write on it and see what came up. I have therapy tomorrow and I’m homage to my younger school years, here I am doing some last minute homework.

I’ve said a few times recently how detached I am feeling, numb to my situation for the most part. And I know it’s a coping mechanisms, it’s my minds way of saying there’s so much going on here for you to process and cope with. To many emotions, mostly I think.

I know that I want to see this journey through its natural course. If I were to be able to wind back time and not get the vaccine I wouldn’t. I have learnt too much from this journey, that I otherwise wouldn’t have been able to as I wouldn’t have had all this time and space had I not become ill. That being said, if someone offered me a magic fast forward pill to a time where I am healthy and well, truly living, I know damn well I wouldn’t be able to resist the temptation.

The truth is I am bored. My situation has led me to have a cynical mind. Everything I do is a balance of consequences. If I do that, that’s going to increase my pain for this long – Is it worth it? For instance I went to a classic car show at the NEC Friday. I rarely do anything like that, because of the consequences. But I just really wanted to go. My dad and I do two or three car shows a year and that’s always been one of them. I wanted ti be normal for a day. But I know it would cost me dearly. I took my walking stick, but it was still the best part of 6 hours on my feet, keeping my mouth shut about how much agony I was in and popping an extra pill halfway. That being said I really enjoyed it. But I am still paying the price today, Tuesday. It was a decision I had to make – was I willing to pay this price?

For most people life it’s a choice or balance of consequences. It’s a I want to do that, I have the time to do that, so I’m going to do that. It’s not always that simple, I’m aware, but that’s the general gist of normal plan making. Mine is that I want to spend a few hours having coffee with a friend, I have the time to do it, but it will cost me the rest of the day and possibly some or all of tomorrow feeling like someone is dragging barbed wire through my eyeball and out my ear, whilst simultaneously hitting the base of my skull with a rock. I know, I came to the same conclusion as you – the coffee is worth it. Genuinely, it is. Because of what I gain mentally from spending those few hours with a friend. Those few hours where I can push through and pretend I’m normal and not in pain.

But I am bored. I’m bored in the usual sense of spending so much time doing absolutely fuck all. But I’m also bored in the sense of I’m bored of having to play the game of balancing consequences. I’m bored of having to be so cynical when someone suggests coffee. I want to be like ‘fuck yeah I can’t wait to see you!’ Not internally having to be like is that going to be worth the consequence, what else do I have on that same day or the day after, which would I rather do because I probably can’t do both. It’s so shit. It’s hard to be positive when you have to think of life in that way.

So yes, what I am going through has become a burden. And I know it probably has for those around me too, because I just not a beautiful ray of sunshine a lot of the time. I’m a little stormy rain cloud. I think this is why I’m feeling so detached, why my mind is trying to protect me from feeling this all the time. Because if I allowed these thoughts and feelings to run freely I don’t know if I’d cope. I don’t know if there would be any coming back from the place they want to take me.

On Friday I had a lovely day. It wasn’t my best with my head pain but I spent a lovely afternoon with Darc just relaxing and catching up.

After, I knew my mum needed a few things from Tesco and as I was out I offered to get them. By this point I was in a lot of pain but it was just a bottle of milk and a few pots of soup. Nothing wild. I’d picked myself up a coat from upstairs and went in search of the soup. I ended up with 3 tubs because I’m indecisive and headed to the milk. Picking up a couple of pints and slung it in the basket.

It was at this point I knew I’d fucked up. I had to carry the basket with two hands, clutched to my body with my back leaning backwards with the weight. Yes, the weight. Of a few pots of soup and some fucking milk. I felt so humiliated to be struggling so much with so little. I waddled my way to the till and unceremoniously deposited the offending items to the conveyor and loaded them into a bag. For ease I put the coat on, then grabbed the bag like a normal person would and realised it was still too heavy to carry like that.

So I hefted up the bag with both hands, clutched it again to my body and waddled to the car, where I fought to get the door open with no free hands. I finally succeeded, depositing the bag to the passenger seat then dropped into the drivers side and I wept.

I was so deeply humiliated, facing defeat by what was literally just a few items. I know they weren’t, but my mind was telling me that everyone was watching, judging, not helping. There was a time when I wouldn’t need a basket for that few items, a time when it was the sort of weight i could swing from my pinky finger and barely notice it there. It was such a shock to realise that some soup and milk was the undoing of me.

I don’t often do the shopping as I can’t make it round the supermarket for a full shop. If I’m out I often pick up a few little bits we need, but nothing more than a bottle of milk or a few salad bits or veg. I think because of that it came as a huge shock that I was struggling with so little. It just brought reality crashing down and slapping me in the face. There are things I make allowances for to help me cope that are just second nature now. Like I know if the kettle or filter jug are above half full then I need to use both hands. But I tend to do that anyway as my coordination has been impacted by the drugs I take and I get the shakes. I’ve scalded fingers a few times, enough to introduce measure to make me safer. Like using both hands. But I don’t even think of these allowances I make anymore, they’re second nature.

And then I go and pick up too much in Tesco and reality hit me and suddenly my mind is reminding me of all the little allowances I have to make that prevent me from seeing just how much I struggle.

I’ve kind of become numb and unresponsive to my life and the things I write about. And then something happens that makes me see and feel it all, there’s suddenly no more hiding. It’s a bitter pill to swallow.

My reality was brought to light at the end of last week when my friend Ricky wrote my letter to Kate Bingham. I’d sent him a mind dump and he used that and my blog to produce a very emotional, poignant plea for help. That brought me to tears and really moved me. Not just it’s contents but the effort Ricky put in to help me, by producing such a beautiful letter. I know you’ll read this, so I want to say thank you again Ricky, this meant so much! But reading my story written by someone else was so very hard. As I said, I’m numb to what I am writing most the time. It’s just a brain dump that I then publish without rereading. Then reading what Ricky wrote was my undoing. I sent the letter straight away, just as soon as I’d cleared the tears from my eyes so I didn’t bottle it. But it bought my reality to light once again, made me face the weight of the last 16 months. It’s impossible to be numb when reading your own story as if for the first time.

I spoke to my mum about writing something to Kate Bingham or someone else and what I should be asking. And like mothers do, she made some very good points.

1. I deserve help. This shouldn’t have happened to me, but it did and I should have to suffer more than necessary.

2. Why am I not a case study? No one has checked what the virus did to me that has caused this exacerbation of my condition. This exacerbation that has lasted beyond the life of the vaccine in my system.

I’m gonna skip to point 2. I, with this rare headache disorder, had a significant reaction to the Pfizer vaccine. No one has looked past the symptoms. No one has thought, what caused this to happen? What if it was something specific in the Pfizer that caused this, and that in fact people with Hemicrania Continua should only have a different vaccine. I am aware that what has happened to me has stopped other sufferers of this condition, whom I’ve spoken with in our peer support group, to not get vaccinated for fear of a similar reaction. A couple of them are even in healthcare.

Who am I supposed to go to to discuss this? Who will hear me, I mean truly hear me, and care enough to investigate past treating just the symptoms. I am part of a minority with this condition and with having had a negative, long term, reaction to the vaccine. But surely that doesn’t mean I should be an over sight. My neurologist has continuously toed the line of ‘it’s a coincidental’. I truly believe she is wrong I don’t say that to disrespect her knowledge, her studies or her authority in the field of headaches. I say it because I had this condition under control for 6 and a half years. And within hours of the vaccine I lost that control. I say it because I know my body, I know my condition and I knew how to manage it. Something, following the vaccine, changed that. I lost control and have been unable to get it back. This condition is known to only fully respond to one drug, Indomethacin. It’s used as a diagnosis tool. That drug was and is no longer effective, following the vaccine. Why?

But it seems only I want to know why. Perhaps I haven’t shouted loud enough. Perhaps I haven’t shouted in front of the right people. But I don’t know who the right people are. Who will help me protect others with this condition? I’ve already spent 16 months as a lab rat, they may as well get something useful out of it. And it’s not even just to help others. I want to know why this happened to me. I feel I deserve an answer to that.

And my mum is damn right on the first point too. I am deserving of help. This shouldn’t have happened to me, or anyone. But that’s just the way these things work, sometimes medication and vaccines just don’t react well to some people. But past financial help I don’t know what help I need or can be offered. Medically as my neurologist says, I have tried everything except the implant. She is at a loss and can no longer offer me her help. The weight of giving me a life back lies firmly with my neurosurgeon.

There is a government vaccine payout of £120k for those impacted by vaccines, including the covid vaccines. But first I have to prove that I am at least 60% disabled and then prove that that disablement is as a result of the vaccine. It takes a minimum of 6 months for them to even look at your case, and that’s not including covid vaccine cases. If I went down that road, and I got granted the payout, I’d no longer be entitled to universal credit. So I’d have to make a choice as to whether £120k would cover me financially for an unknown amount of time until I’m recovered, or whether the stability of UC is the better option. That payout isn’t compensation, but I don’t get compensation and financial help. I’m not trying to be greedy here, but I cannot retrospectively apply for this payout when I’m recovered. Compensation wouldn’t make up for what the vaccine did, but it sure might help the rebirth of Chloe Price. In my blogs I’ve discussed a lot about my debt, my mental health, my personal growth and discovery and how I intend to live my life on the other side of this. The compensation would allow that change to be easier for me. But if I want it, I’d have no choice but to use it to live off while I am unable to provide a living for myself. It’s not right. That compensation could actually be used to send me to uni and train as a psychotherapist, to clear my debt, to buy my own home, to go on a holiday. The sort of shit compensation is for. I’ve rambled but it makes me mad that I am in this place.

It’s not just the financial help I deserve, I just don’t know what other help I want or need to ask for. But financial help would help me and help others who have helped support me during this period. Not least my family and friends, but also my therapist. Throughout this whole ordeal I have had to maintain private therapy, sometimes up to 3 times a week. I can’t afford my essential bills but I know I cannot afford to forgo therapy. This situation has been at times unbearable to suffer through. To find a reason to want to make it through the day, to want to see tomorrow. Now I would never give up my therapist. In fact I’m grateful the NHS mental health service failed me, because from that failure I found the therapist I now have. The therapist who has gone above and beyond, who has helped me dig deeper than I ever thought I’d be able to. Who wanted me to find me as much as I did, sometimes probably more.

Truly I would love nothing more than to be able to do something for everyone who has helped me in this fight. Those who have used their voice when I couldn’t find mine, who have helped keep me fed, who have helped me attend my appointments, who have even helped me wash my hair. I truly could go on, but mostly, those who have helped me want to see tomorrow. Every coffee with a friend, every family dinner, every laugh, cry and hug, all of that is what’s kept me going. Last week in therapy I discussed how I get a mental low following seeing friends and family. I can push myself for a few hours to see others, to pretend my pain isn’t there. I mean it hits me hard after but it’s a few hours of feeling normal. And then it’s gone, and there’s more pain, and I’m alone again. I was upset telling my therapist how I just wish these things, seeing friends and family or walking my dog were my reality again. Why can’t I feel normal forever? But she pointed out that they are my reality. Those two hours really did happen, and I really was there for it. Everyone who has gifted me time, patience, understanding and love deserve thanks too. Because I’m not naive enough to think I’m the only one that this impacted. Also Bella deserves a whole life time of unlimited beach access for what’s she’s given me. I don’t want to move to the coast but I’m sure as hell gonna make sure she gets to see the sea as often as her heart desires. I want to ensure that as I rehabilitate she does too. She has handled this sudden change in her life and routine so well, especially for an anxious dog that relies on routine to feel safe and calm. She’s accepted fewer walks, spending the majority of her time in bed with me and fewer adventures outside the four walls on the house. She’s brilliant, I know I am biased, but every tantrum she throws is valid. Because I throw them too.

Let us not be ashamed to speak what we shame not to think.

Michel de Montaigne

Friday in therapy we tried a new exercise, a constellation. Many things came up, a few thoughts, but mostly feelings and pain. Feelings such a fear, anger, sadness and shame. We discussed the shame on a deeper level, the feelings of fear, anger and sadness are largely expected and have been discussed at length before.

The shame came from a different place. It came from the item we associated with solution. Initially my thoughts were of the implant, diet, exercise and therapy. All things that should become part of my solution, or so I hope. But then shame came up. There are probably deeper feelings behind that, but they come together to create shame.

I had to think about what I was feeling shameful about and what came up was that I’m not doing everything I should be as part of my solution.

Diet for instance – I have an impulse and binge issue around my diet. The impulse being around impulsively eating fucking everything in one go. Particularly when my pain is bad, so evenings usually, I impulsively binge eat. I don’t know if it’s in search of a distraction from the pain, or for comfort. But it’s what I do. If I go to a shop I will often impulsively buy a bag of maoam. Then I will start eating them before I’ve even got home and I will eat the whole packet. The binge. When it comes to eating dinner, I have this almost compulsion to eat everything on my plate. Whether I’m full before I’ve reached halfway I really struggle to stop myself eat everything anyway. Then I’m sitting, watching a bit of tv, in lots of pain, and I have this impulse to eat again. This usually ends up being something sweet. This kind of diet does not go towards my solution. I should be eating more nutritiously. I shouldn’t be over eating, impulse eating or binge eating. I should be eating the sorts of foods that will fill me with nutrients and energy. Most days I’m not capable of preparing or cooking good nutritious food and that is not helping me.

I should have reach out to the doctors by now to discuss getting help to better my health overall. If I am to have this implant I need to make sure I’m in the best health possible to receive it. Currently I am overweight due to a mixture of my diet, lack of exercise and my medication. A doctor offered to refer me to their weight clinic to help me get my weight to a healthier level, now I’m not clinically obese but I am not a healthy weight. This is also having an effect on my joint issues, this hindering my mobility further than the condition alone would. Anyway I snapped, I was triggered by this doctors offer and I didn’t handle it gracefully. What should have happened since is I should have called back, apologised and accepted the referral in order to better my health. Exercise wise I am massively hindered by my energy and pain. I should be asking the doctors for a referral for hydrotherapy which would be a much more manageable way to start incorporating exercise into my routine. Because weightlifting is just not an option for me right now – I don’t have that in me which is very hard to accept and admit. But any help that is offered in order to keep my weight in a healthier range I should have accepted. Now I do need to make a grovelling phone call and ask for the help I need to improve my health.

BUT there’s still more I’m shameful about, still on the subject of health. I started smoking again in the first lockdown. I started smoking in my young teens but managed to kick the habit and I felt so much better for it! After about 5 years I’d occasionally social smoke, or if I was out out. I switched this to vaping, still not healthy but significantly better. And then come the first lockdown I picked up smoking. Now 2 and a half years later I’m still smoking. I keep trying to quit, when I had the funds I was trying patches which did help me cut down – until I started having skin reactions to the patches. I tried using a vape to help me quit, which did help until I caved and had a cigarette. I’m not a heavy smoker but I’m still a smoker and it’s just not good enough. I shouldn’t be adding more poison to my body while writing in my journal how I’m fed up of all the drugs I have to put in my system daily. Yet here I am adding to it. Ask me why I haven’t quit and you’ll usually find me saying something like it’s my only vice, particularly if I’m feeling flippant. Truth is I don’t know. All I do know is that I’m finding it very hard to quit and is another thing to ask for help with from the doctors.

Another thing to ask the doctor for help with is the findings from my osteopath visit last month. He found significant tension around my skull, face, neck and shoulders. Particularly around my skull and around C3, C4 in my neck on the right hand side (the side of my pain). The session itself didn’t provide me with any relief but I came away with knowledge of this tension. In fact the osteopath said ‘I can feel how much constant pain you’re in, it’s so evident’. He could see my invisible condition. As the session didn’t provide relief there was no point travelling to London for further treatment. That doesn’t mean I shouldn’t be seeking further treatment, this level of tension is obviously not going to help my pain. And while the tension is there, am I going to be getting the most out of the treatments for my HC? I don’t know. What I do know is that while travelling to London for treatment isn’t necessary, seeking more local treatment is. Because if there’s any chance it might help that I need to seek that.

The shame comes from things that are in my control that I am not doing anything to control. Some of it comes from my difficulties in asking for help. I expect some of it comes from the fact that so many things are out of my control, so many things that I can’t do, and so this is my inner child being defiant. It’s a petty protest and my health is suffering the effects of it, because the protest isn’t impacting anyone else. Just me. It’s a typical ‘you’re your own worst enemy’ situation. But that’s ok. I mean it’s absolutely not, but what I mean is that my situation and my solution is a process. It’s not always easy, and it wasn’t until therapy that a lot of this came up. I’d had the odd thought here and there, but I never followed that thought or dug into it any further. Probably because I knew what I’d find. But I will reach out for the help and support I need with these things. I won’t make promises about the when, but I will.