Inside I'm Dancing
Chloe with her mother Sophie
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 any more because my body is broken; it doesn't function or co-operate 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. 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 state 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 formally diagnosed with Myalgic Encephalomyelitis (M.E.), a debilitating illness 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; M.E. can be so severe it can cause total automatic failure and what I call "secondary effects" – opening the patient up to a whole world of illness possibilities, such as: Fibromyalgia, POTS, Gastroparesis, Eosinophilic Colitis and Mast Cell AD. Within a body of an M.E. sufferer there are thousands of cells continuously damaging one another. Personally, thanks to the vaccine ingredients and active HPV proteins, my body is replicating foreign (unwanted) cells without a stimulus of a virus, or bacterial bug. The lack of healthy cells to fight back plus chemical changes/toxicity of any kind within the immune, endocrine or lymphatic systems can create a disease development tragedy. This has led to Central Sensitisation, a condition that is associated with the development and maintenance of chronic pain. When central sensitisation 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, looking 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, trying to live a normal life, which wasn’t at all easy. For the first three years, on the outside I "looked well"; with make-up 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 gruelling despite my mild/moderate M.E. back then, yet school was so precious and the good moments are cherished.
I was deteriorating and all of a sudden I became home-bound, 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 almost 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 lying 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, embarrassing 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 suffered with 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 2.75 years and it's become a form of daily life for me and many others with this debilitating autoimmune disease. It’s frustrating. It ruins your life.
Due to a boom/bust cycle and deterioration of my M.E. 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. They weren't too bad at first but they just got worse as the months went on. I've been recently hospitalised for severe malnutrition from Gastroparesis and a shrunken heart that beats irregularly and often peaks at 200bpm (POTS). This last year has consisted of almost 12 months in hospital, I've spent time in ICU with respiratory arrest on life support, I had sepsis x3, I endured a severe rare form of Colitis, had countless procedures, operations, many feeding tubes and I've been catheterising up to 12x 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 M.E. 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 at 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 realised that I should've loved it much more. I never really realised 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 dreams. Being unwell has taken my ability to talk (sometimes), 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, travelling 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 have 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 "teenhood". 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. 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, its 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.
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 learnt how powerful that alone can be. I have discovered the inner strength that 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 mounded and sculpted me into the wiser, stronger, more educated and more thankful woman I am today.
M.E. Support has changed my life in many ways. It helped me realise I'm not alone in this fight and this sickness is indeed real and not psychological, after many medical professionals saying it is. But the biggest way Louise and M.E. Support have helped me is giving me the inspiration to write, blog and overall express myself through words.
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. 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.