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.