How I Developed Myalgic Encephalomyelitis After Getting the HPV Vaccine
I used to live by the motto “Don’t wait for the storm to pass, learn to dance in the rain” – but unfortunately in my life this is no longer the case. My life is stormy. I can’t dance through this pain and heartache anymore because my body is broken. It doesn’t function or cooperate with me. Why? Because I’m severely injured by a vaccine which triggered myalgic encephalomyelitis.
Throughout 2010/2011 I was given three doses of Cervarix, also known as the HPV or cervical cancer vaccine. I noticeably became unwell three to five days following the second injection in January 2011. I was experiencing relentless fatigue, muscular pain and an overall unwell “something isn’t right” feeling. Yet doubtfully, without any hesitation or seeing the correlation, I (regrettably) continued to have my third and final injection which considerably worsened my already poor situation of health.
My once healthy body has attacked itself, resulting in an autoimmune response, causing autonomic dysfunction. I’ve lost my precious immunity. In February 2012 I was formerly diagnosed with myalgic encephalomyelitis (ME), a debilitating illnesses with no cure. This was only the tip of the iceberg, so to speak; lurking within deeper waters are hidden challenges, battles and hurdles and we will never know when or what will eventually surface.
Having to live with a long-lasting chronic condition is completely unpredictable, uncontrollable and extremely painful. ME can be so severe it can cause complications which can result in total autonomic failure and what I call “secondary effects” – opening the patient up to a whole world of illness possibilities, such as fibromyalgia, postural orthostatic tachycardia syndrome (POTS), gastroparesis, eosinophilic colitis and mast cell activation disorder. Within the body of someone with ME, there are thousands of cells such as immunoglobulins or mitochondria that are continuously damaging one another, causing abnormalities and complications.
Personally, thanks to the vaccine ingredients and active HPV proteins, my body is replicating foreign (unwanted) cells without a stimuli of a virus, or bacterial bug. The lack of healthy cells to fight back (leukocytes, lymphocytes, granulocytes, monocytes) plus chemical changes/toxicity of any kind within the immune, endocrine or lymphatic systems can create a disease development tragedy – and, in severe cases, death, induced by a immunotoxicant. This has led to central sensitization: a condition that is associated with the development and maintenance of chronic pain. When central sensitization occurs, the nervous system goes through a process called “wind-up” and gets regulated in a persistent state of high reactivity- causing persistent widespread pain and malfunctioning organs.
I was once a dancer. A healthy 12-year-old who enjoyed sports and loved school. I didn’t want anything more than to gain a dance GCSE and get A’s, but unfortunately my body failed me. I wanted to audition for a dance college and work. I looked forward to a life on the stage, performing at dance conventions across the country. Dancing abroad. Being involved in the dance world, taking every opportunity, grabbing it with both hands and living the dream.
In my mind I was prepared for everything. But my body? It was getting weaker. The force of chronic illness grew within me. I tried to hide the pain from others, covering it up with a smile; I tried to live a normal life, which wasn’t at all easy. For the first three years on the outside I “looked well.” With makeup on I could be mistaken for a normal, healthy teenager. But the inside of me is a completely different story – there’s no way to escape it.
I am a prisoner within my own body. School was important to me. I never left the house for anything else due to the challenging process. Being able to attend school was a marathon and incredibly grueling, despite my mild/moderate ME back then. Yet school was so precious and the good moments were cherished. I was deteriorating, and all of a sudden I became homebound, wheelchair-bound, then completely bed-bound. Now multiple simple day-to-day things have become impossible for me to do. I just want to be in a wheelchair and visit a shop; I haven’t seen a shop in over three years.
The severity of my pain is getting worse. It’s beyond my control, and shoots up way over my tolerable pain barrier which I have strongly built up over the years. It’s not just an ache… it’s a bone-crushing, deep, dull, stabbing, pulsating, musculoskeletal hit by a bus dragged along the motorway kind of pain. Which even morphine-based drugs hardly touch. Just laying down still causes agony. Not to mention the tonic clonic seizures which cause memory loss and loss of speech, the added fatigue which is not relieved after rest or sleep, the dizziness, fainting, cognitive dysfunction, light, noise and smell sensitivity and severe nausea. An unwanted bundle of evil which I would never wish on my worst enemy. It is a lifelong illness, with no effective treatment.
All these different pains are at war with each other – when the tingling and numbness collide with the migrating, throbbing, bone freeze-thawing-type pain, the battle is at its peak. Ironically, neither of the pains ever die fighting, they usually come back and attack stronger. But my body will never surrender.
Over the years I have experienced paralysis now and again – from being one limb, just my legs or from the neck down. To this present day I have had permanent paralysis for two and three-quarters years and it’s become a form of daily life for me and many others with this debilitating autoimmune disease. It’s frustrating. It can ruin your life.
Due to a boom-bust cycle and deterioration of my ME, it progressed into fibromyalgia in 2013. Now more recently, over the last three years, I have been suffering immensely from heart issues and arrhythmias, gastro, lung and bladder problems. Which weren’t too bad at first, but they just got worse as the months went on. I’ve been recently hospitalized for severe malnutrition from gastroparesis and a shrunken heart that beats irregularly and often peaks at 200 bpm (due to POTS). This last year has consisted of almost 12 months in the hospital. I’ve spent time in the ICU with respiratory arrest on life support, I had sepsis three times, I endured a severe rare form of colitis, had countless procedures, operations, many feedings tubes and I’ve been catheterizing up to 12 times daily for bladder retention. I am under investigation and queries for possible other autoimmune diseases as my body is now susceptible to anything.
I am completely bed-bound and basically living my life lying down. My ME is classed as being in the “severe” category where I now need 24/7 supervision… The list goes on! I need a lot of assistance due to all of the above. It’s life-limiting, and isolating, but there is always hope and a reason to smile, laugh and surround myself and others with happiness every single day.
“Hope is being able to see that there is light despite all of the darkness.” – Desmond Tutu
Having these illnesses has basically changed my life. The way I look at the world. How I appreciate the smallest of things. I don’t take anything for granted. I view life from a completely different perspective, and I get easily pleased with the smallest of achievements! If I could turn back time I would really appreciate and be aware of every single step and every breath I took without tingling, numbness, being in agony or collapsing. I’d appreciate the ability to eat food and cherish the taste (because I’m now tube-fed directly via my bowel and I have severe allergies). I’d appreciate feeling refreshed after sleeping. I’d appreciate showers and easier self-care. I’d appreciate freedom.
I loved my pain-free life regardless, but now I have realized I should’ve loved it much more. I never really realized how much I loved life, or how much I would miss my “old” life until it was grabbed from me – leaving me in a world full of mystery and loss.
Being chronically sick has shattered my goals, plans and my dreams. Being unwell has taken my ability to (sometimes) talk, walk and generally live, let alone follow my dancing dream and do various things a typical teenager should do. I missed out on the concerts, festivals, parties, theatre trips, college, uni, traveling adventures and so much more. I’d do anything to have the healthy life I had six years ago. I wish I could have my teenage years that had been stolen from me back…
However, as much as I despise being so ill, ironically, I would never erase the experiences which have come with the pain, sickness, heartache and all the horrible events that I have endured during my “teen-hood.” Why? Because despite a life full of hardship, hurt and negativity in addition to a bunch of severe diagnoses following from a vaccine injury, being unwell has come with many positives that strangely balance out the negatives.
My “new” life created a new story with blank pages. My blog, “The Chronicles of Chronic Illness,” began. Each chapter was unexpected – I was forever wandering into the unknown with a variety of new adventures, new goals, new dreams and a brand new altered perspective on everything. I knew my story would be written and printed as new things occurred. It’s history, and no matter how much I would like it to disappear, I know it can never been undone or deleted.
That’s why I decided to find the best in every situation to create a story worth being told (Chloe’s Chronicles of Chronic Illness – My HPV Vaccine Injury Journey). This never-ending fight for my life has taught me an awful lot. I have witnessed and overcome many things that people will never do in their lifetime. I have found happiness despite darkness and I’ve learned how powerful that alone can be. I have discovered the inner strength I never thought I had. I understand how much willpower, determination and endurance it takes to get through every minute of the day.
I know who I am. I’m Chloe and I am a warrior. Life has moulded and sculpted me into the wiser, stronger, more educated and more thankful woman I am today. Life is unpredictable, but I am hopeful. I hope that one day, despite the storms, I will be able to dance in the rain and be in much less pain.
“Hope is being able to see the light despite all of the darkness.” – Desmond Tutu.
P.S. If you or anyone you know got diagnosed with a chronic condition after the HPV vaccine (even if you think there’s no correlation), please contact me.
This post originally appeared on The Chronicals of Chronic Illness.
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