February 28th was “Rare Disease Day”. I have many rare conditions, but to be quite honest they’re not rare at all (bar one); just unknown to the world due to lack of awareness or poor public willingness to believe that they’re actually real. Therefore myself and my conditions have barely any acknowledgement nor understanding.
Firstly I am Vaccine injured. Yes, injured by a vaccine. I had an adverse reaction to the HPV vaccine for cervical cancer and I’m not afraid to admit it. The small majority of the world will never believe, nor entertain the idea of that vaccine being the predominant cause of all of my debilitating, life altering, sometimes fatal diseases. Sadly it’s the pure, raw and alarming truth. It’s reality, my reality, and my everyday life. I will unfortunately forever be scrutinised, penalised, hated and get a huge amount of backlash for saying it how it is. Vaccine damage is happening, and people should never hide their story because they’re afraid of what people think.
Secondly, I have developed what I call ‘secondary effects’ from the vaccine causation in form of many severe diseases. Such as: Myalgic Encephalomyelitis, Fibromyalgia, Gastroparesis, POTS, dysphasia, MCAD, and Eosinophilic Colitis+ more undiagnosed. It’s as if you can’t have one autoimmune/ autonomic disorder without developing the other.
Myalgic Encephalomyelitis, also known as and abbreviated to ME, is a condition which causes central sensitisation. In short, CS is an ongoing process in my poorly functioning body. It is known as the evolutionary ‘cycle of never ending pain’ which occurs in the CNS- it’s almost impossible to break and difficult to control. When central sensitization occurs, the nervous system goes through a process called “wind-up” and gets regulated in a persistent state of high reactivity; sending real (but false) painful messages and activity to the brain, which then causes the automatic reaction of intense widespread pain without a physical stimuli (such as stubbing a toe.) CS isn’t just associated with pain, but touch (hyperesthesia) , smells (hyperosmia) , light (photosensitivity) and noise (hyperacusis).
ME also causes symptoms such as headaches, muscle pain, muscle weakness, paralysis, heavy limbs, never-ending flu like symptoms, swollen/painful joints and relentless exhaustion known as chronic fatigue.
Fibromyalgia is similar to ME, but it has slightly different symptomatic characteristics. Fibro’ is known to be more of a ‘nerve pain endurance syndrome’ because patients endure so much nerve related pain- which is often described as hot toxic liquid injected into the arteries and veins because many suffer with intense hot burning sensations branching out across their entire body, along with voodoo doll like symptoms (stabbing, slicing, jolting, pinching) as well as many flare up trigger points throughout the body, plus burning, tingling and numbness.
Gastroparesis is a condition which causes the stomach to paralyse, and in severe cases paralysis of the entire GI tract- from the oesophagus to the anus. In my case my stomach and food pipe is fully paralysed; my stomach will not absorb or tolerate any food or feeding formula even if I could swallow. My intestine/bowel is partially paralysed which delays gastric emptying (opening my bowels). I’m tube fed via my jejunum (small bowel) with an elemental formula which is already broken down so my body doesn’t have to battle hard to digest or absorb it; it provides me with all the nutrients I need to stay alive. I also have medications via my Jejunostomy to take the edge off my entire body pain, to prevent seizures, heart attacks and POTS episodes. Gastroparesis causes reflux, nausea, vomiting (I use my Gastrostomy tube to drain my bile), malabsorption, malnutrition, weight loss, hair loss, loss of appetite, constipation and excruciating stomach pains/ bowel cramps.
POTS- short for Postural Orthostatic Tachycardia Syndrome, is a cardiovascular neurological disorder which can be dangerous left undetected or untreated. POTS affects the autonomic nervous system and causes symptoms such as: chest pain, palpitations, fainting, dangerously high heart rates + very low blood pressure on standing, but in severe cases led down or sitting up. It also effects the endocrine, lymphatic, respiratory, and urinary systems which are systems that are out of the individuals control. For example, someone may not have control over their bladder or bowels, oxygen levels may drop, hormones may change and the body may be lacking vital vitamins such as iron, potassium and magnesium. POTS links with Gastroparesis, and hypersensitivity/ MCAD/Mast Cell reactions/ high histamine release in the body causing an anaphylactic type response.
Eosinophilic Colitis- EC a form of Inflammatory Bowel Disease (IBD) Is the rarest of them all. Only 12 people in the UK have developed it. It’s different to the commonly known ulcerative colitis because inflammatory markers are not just shown. In EC Eosinophilia is found in the blood and many Eosinophils are found in the colon. Layers of Eosinophilia cells build up in the bowel forming a thin white coating, areas of break through erosion, severe but un balanced inflammation, blood, patches of ulcerations, clusters of puss, and floppy scare tissue. Eosinophilic colitis needs to be treated with strong courses of IV steroids and oral steroids until it has calmed down or in remission.
Lastly, dysphagia. Dysphasia is difficulty to swallow E.g. Food, liquid or in my case saliva. This condition is common in those with Gastroparesis, delayed gastric emptying and other Gastrointestinal diseases,
Every inch of my body hurts so bad everyday. My stomach is cracks and pops- it’s my natural alarm clock meaning “drain that bile now before you explode with vomit and scream for hours on end because it’s built up too much”. I’m swollen all over, my nerve endings are as hyperactive as someone persistently being tasered by the police, It feels as if I have barbed wire wrapped around my muscles; it’s tangled, every move I make it embeds deeper into my lifeless limbs. It’s a tearing sensation, an intense throb all over and I’m being repeatedly hit and stabbed and splashed with boiled water which keeps me awake. I’m shivering from multiple seizures, my lips are blue and I’ve gone a translucent grey colour. I feel as if I’ve been left out in the pouring rain with nowhere to go. I can’t hide. I’m a prisoner of my own body. There’s no effective treatment. There’s no cure. I can’t escape from this!
There’s no antidote for vaccine damage-it can’t be reversed or prevented…but there’s many techniques and methods to accept and cope with the crazy life it causes.
Do you have a rare disease? Whatever it may be, never be afraid to tell your story.