Vaccine injury-It’s not “one in a million” 

Being vaccine injured and speaking about it publicly not a lot of people believe, they think it’s incredibly rare, and they want proof. I’m constantly told “it must be one in a million” and “it’s a coincidence”; it’s definitely not, in fact it’s not even one in one thousand- it’s approximately 105 people who are severely unwell per 1000 injected, I will show you why…

Unfortunately there are not many accrete statistics from the UK to present to people who don’t believe how many are injured by the HPV vaccine. So here below is a recent Aluminium poisoning vaccine review, plus the USA vaccination case study (which is said to have its information collected after 2 years of Gardasil 9 existing). It provides the public with a statistical insight; proving that a mass amount of teens get injured by Gardasil- in this text it is referred and compared to an unbelievably small percentage per 100,000 cervical cancer cases.
The Source: http://vaccineimpact.com/2014/stronger-more-toxic-gardasil-vaccine-approved-by-fda-will-more-girls-suffer-and-die/ 
“For the first time, Merck (the manufacturer) has disclosed what may indeed be close to the true rate of serious adverse events people are suffering after the use of Gardasil and will probably continue to suffer if they consent to using (the “new” and “improved”) Gardasil 9. The only difference would be that the rates may be higher when used in the general population (instead of a monitored study) because certain ‘at-risk’ groups are excluded from this small clinical trial participation but not from vaccination programs.” Child vaccination programs take place across the globe-each country have there own rules and regulations, for example: the US give 3 ‘shots’ in one whereas the UK gives 3 over the course of 6 months. US citizens are more likely to be injured due to the ‘shot’ volume (which is triple the UK’s recommended dose.) Therefore, taking that into consideration the rate of those vaccine injured outside of this trial is likely to be significantly higher; especially if a specific state or country labels the HPV vaccine as mandatory. 
–Here is the main case study criteria word for word from the article which is backed up by statistics and table diagrams–
“2.3-2.5% (of severe adverse reactions) doesn’t sound that bad until you compare apples to apples. Cervical cancer rates are always quoted as # per 100,000. Given the above information {from the source}, for every 100,000 people using Gardasil 9 there would be 2,300+ serious adverse events. The cervical cancer diagnosis rate in the United States is 7.9/100,000.

What health official in their right mind is willing to anticipate 2,300 serious adverse events to try and prevent 7.9 cases of cervical cancer?”
Then “In addition to the serious adverse events, you now have (at least) an additional 2,400 people who will be left with systemic autoimmune disorders. How can any health official possibly think Gardasil 9 is worth this kind of risk?”
Here’s Both Gardasil & Gardasil 9 (commonly used HPV vaccinations world wide) statistics combined-
Severe adverse events…

Number of shots given:

Gardasil-13,234 +

Gardasil 9-7,378 

=20,612 in total.

Percentage & number of Serious reactions/events:

|2.3% |305 +

|2.5% |185 

=490
For 20,612 people in the controlled case study with Gardasil and Gardasil 9 combined 4.8% (490 people) got incredibly severe/fatal reactions. 

Therefore, for every 100,000 injected an estimated 4,800 people have severe reactions to prevent ONLY >>7.9 out of 100,000<< cases of cervical cancer!
Autoimmune Disorders…

Number of shots given:

Gardasil 13,234 +

Gardasil 9 7,378 

=20,612 in total.

Percentage & number of autoimmune disorders 

|2.4% =321 +

|3.3% =240

=561
For 20,612 people in the controlled case study with Gardasil and Gardasil 9 combined 5.7% (561 people) got life long autoimmune disorders.
Therefore for every 100,000 injected 5,700 people get severely sick with systemic/autoimmune diseases to prevent >>7.9 out of 100,000<< cases of cervical cancer. 
Overall, in calculation (4.8%+5.7%= 10.5%) of (490+561=) 1,051 people got majorly SEVERELY affected out of 20,612 people who got injected in this particular study. Therefore, per every 100,000 injected 10,500 people can get severely sick from both Gardasil or Gardasil 9. Furthermore, to conclude, thousands will have poor quality of lives to prevent or protect ONLY 7.9 out of 100,000 cases of cervical cancer- which is shocking. In theory, that’s basically HALF of the TOTAL people vaccinated (20,612) within this american scientifically controlled case study. 
Imagine if these case studies would of taken place in every single country across the world!
The aluminium levels that hide within the product which inoculates our future generation of adolescents is a story in itself. View the source link to see the toxic levels within the vaccine which is printed on the product insert; the insert which is restricted to be seen by parents and the public.
Are these statistics worth the risk?   

I know my answer. What’s yours! 

There’s no hospital without a bit of hell! 

I did good to stay out of hospital for almost 6 weeks after being in for an entire year. I’m at my local hospital unfortunately but hopefully I’ll be out soon!
Staying out of hospital is like trying to thread a thin needle with a big piece of thread blindly. Basically an absolute nightmare. You think you’ve got it in, then you haven’t. There’s that uncertainty of “will I thread this needle today, or will I miss and not bother?” Hit or miss! In a creative way, that’s what trying to stay out of hospital is (to me) when you live with a long term, unpredictable list of illnesses from a constantly controversial vaccine. You’re sick every day but there’s always times when you need urgent medical attention. I should’ve rung an ambulance 12+ times in the last couple of weeks for firstly a sepsis precaution protocol (I had a temp and a blotchy rash on my chest which came and went), then secondly because I’ve been growing an unusual bug in my urine I was ‘attempting’ to try multiple antibiotics via my Jejunostomy (bearing in mind I’ve developed severe hypersensitivity’s to oral antibiotics and paracetamol {which go directly into my bowel} a year ago but I’ve never needed anything other that Trimethoprim to solve the problem-which I’m thankfully fine with!) Annoyingly I had EXTREME reactions to the antibiotics which are needed to get rid of the bug, meaning back to back (my normal) mast cell reactions and major side effects including instant paralysis of my left arm traveling across my chest along the collar bone, intense chest pain on top of my POTS, I didn’t know who or where I was, my eyes were fixed then rolling, I was high as a kite vomiting, trembling, the celling and walls were caving in and I was hallucinating for 5 hours straight seeing mostly lizards😂It’s funny now, but it definitely wasn’t at the time. As we always do, if it’s something mum and me can control we wait it out-so s that’s what we did. I was getting worse {infection wise} so I tried it in crushed tablets which did virtually the same thing. I then had a completely different antibiotic in a different family; third time lucky…which did the bloody same! I had enough and I was deteriorating more and more, so after those episodes past and the doctors had no other options and were completely baffled, even more baffled at the fact that I said “I’m fine with IV’s!” So unfortunately the only option was to have a strong course of IV cipormycin (generic name: gentamicin) in hospital because it’s too much responsibility for the district nurses. 
A story in itself, the ambulance came took me to the local (hospital, not the pub!) taking all of my medical equipment because I know they wouldn’t put up IV fluids straight away let alone my connect my ‘special’ compounded fluids to my central line (nobody in a&e and the ward know what to do with it AND nobody is trained to simply mix and put up my feed because they’ve “never had a patient like this before” B.S they’re all to lazy but blaming it on my ‘complexity’. We warned everyone of my seizures (had one within 15 minutes of arriving) etc. plus my entire medical history then (I kid you not) the doctor, nurses and sister of the ward looked at each-other and said “mum, would you like to stay?” because I’m to much of a responsibility and liability. They’re lovely enough, but they all freaked out. They’ve done nothing apart from hang an IV and leaving my mum to do the rest instead of put your feet up, and rest! Now I’m in a side room it hardly feels like I’m in hospital at all apart from the grubby interior and smell of hospital food. I just don’t know why they don’t want to challenge themselves when day in day out they witness the same shenanigans on the urology ward? I’d jump at the chance to try something new! Anyways…Moving on!
Of course, after you have had a smooth ambulance journey with lovely paramedics who really understood my situation, allowing me to have entanox to make me comfortable, not wanting to leave because they would love to learn more about my conditions and also meeting a lovely nurse (who’s friend is injured by the vaccine for HPV) upon arrival-something has to go wrong; somebody has to destroy an easy admission requested by my GP as urgent and important. A junior doctor {who looked about 17} was sent to me with the registrar knowing that he has not got the experience nor knowledge to talk to me, let alone examine and consult someone of my ‘complexity’. I thought a first A&E/hospital admission with my tubes and central line would be straight forward, but I guess not. I was told it wasn’t an emergency and he doesn’t understand why I’m here and thought it was wrong (for someone higher than him) to phone an ambulance to get me urgent medical attention and tests because I have signs of sepsis and needed to get rid of an infection intravenously which was all written on the admission form. We ask “what’s your sepsis protocol”.. “oh, we don’t have one… plus you don’t have sepsis you bloods fine… why are you here *smerk*” 1-what kind of HOSPITAL doesn’t have a protocol for the silent killer of sepsis or septicaemia and 2- I was told to call 999 immediately if I had a rash on my chest, fever of 38+ , vomiting and feeling extra unwell in myself. I had them all on and off for 3 days and was really out of it on Tuesday morning, I never ask my mum to ring someone unless I’m bad, so she rang the doctors and he came out straight away and called an ambulance. My GP and I don’t want me to end up in ICU again with sepsis so it’s best to be safe than sorry. You can’t take a chance on life. Anything can happen I’ve learnt that! Then the idiot who lost his bedside manner started quizzing me about my tubes and my line. “Why do you have tubes” -I have Gastroparesis. “But I don’t get it, why can’t you swallow, does it just hurt to swallow is that why you can’t?” -no my esophagus is paralysed; even if I could my stomach wouldn’t take it. “Why don’t you try” “why do you have a central line, you don’t need it” “why don’t you have the water down your jejunum then?” “What’s the difference between IV fluids and water”- I have calories, sodium and glucose + everything else that I need in it. It went on for EVER. I answered each question scientifically on point and he hated my replies and the questions I asked him😂. I literally had 20 questions fired at me when the rest of my medical history has nothing to do with him, apart from my over all health which is infection-suspected borderline sepsis. He told me, without looking at me or mum In the eyes, ” I’m not convinced, it’s ridiculous that you’re here, I’m just not convinced that the medication is going to make you better. You’re conditions are chronic, not acute. The hospital is not the place for you. I won’t be giving you antibiotics; but you can see the consultant if you don’t believe me” I saw the consultant and she listened and understood relatively well and when she said “you’ve got a temp of 38.9 I’m going to admit you, you need the medicine asap!” The junior shook his head and walked off. 
After explaining my entire life story on the ward I got the gentamicin and having another tonight and maybe tomorrow. I forgot how strong that stuff is. Plus it’s true, they haven’t got a protocol for sepsis!!! How insane. They’re not even taking cultures from my line or giving me a chest X-ray or ultrasound.; standard procedures…NHS cutbacks I guess. So we’re hoping that if the bugs reached my line it will kill every thing but me!!

I hope I get out this hell hole fast.

Today Isn’t Just Pancake Day- It’s ‘Rare Disease Awareness Day’

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. 

Chloe’s Chronicals Of Chronic Illness-My HPV Vaccine Injuy

Hello everyone! For those who do not know me, I’m an 18 year old girl who has a bundle of debilitating chronic conditions after being injured by the HPV vaccine. October 2016 I died and came back to life due to the severity of my damaged ANS-I was resuscitated and put on life support until my internal organs recovered and until I could breathe without a ventilator. 
The onset of symptoms noticeably came after my second out of three injections.
Before I got sick I did many things girls age 12 should do. I hiked, mountain biked, went to the park, rollerbladed to the shops, had social gatherings, went to the cinema, birthday parties, I had friends.
I was a dancer. And I think that speaks for itself. I had an artistic, busy and athletic lifestyle. I danced 6 days a week; at at the studio, at school and I also stretched and worked on technique religiously at home. I loved to goto after-school sport and dance clubs every night. I loved the fact that I had a regime and something to look forward to every day. I was on the right road to getting A’s at GCSE.I lived life to the max, life has always been important to me, more so now I’m isolated from the real world. I danced to feel free, in control and to have the time of my life. I used my body to create a piece of art. I made memories which I now use as a coping mechanism and a tool to guide me and help me deal with a life full of disappointment, hardship, illness and pain. 
I wanted to have a dance career; my heart bleeds with the torture knowing I may never walk again, let alone dance again. 
I love art and fashion so I went into fashion design but my conditions took a downward spiral, I didn’t even get a quarter way through the course. 
Everyday is a battle against the never ending symptoms-against pain, random and exhausting fits, mast cell reactions, the agony when meds, feed and water is pushed down my tube. Then there’s the war with the invisible aspects people don’t see: the nausea, migraines, vision problems, light and noise sensitivity, the multiple injection wounds from injecting daily to reduce blood clots. You don’t see the paralysed stomach or delayed motility of my GI tract, the raw inflammation and ulceration in my colon, the over active nerve endings, blocked signals in my brain and spinal cord, and of course the intense chronic pain that you don’t always see in public because of the ‘stay brave and cry later face’. It’s all hidden until you tell the world your story.
The adverse reaction to the vaccine and the conditions I have developed over the years has had a huge impact on my life. Now my life is complicated, and that’s not because I’m in a complex relationship like others my age. But because my future is uncertain. Tomorrow is another day but I never know what tomorrow or even the next hour will bring; I can’t predict the future and I can’t plan ahead. I don’t know if I’ll be able to have kids as I know many 18 year olds who are infertile thanks to Cervarix or Gardasil.
I may have a broken body which persistently disobeys me, however I am lucky enough to be a mentally strong individual who’s managed to build up her own coping mechanisms and psychological techniques despite negligence and terrible past experiences. Despite hardship I find happiness. Despite pain I find inner peace. Mindfulness may help others in my situation, and yes it will keep the demons of depression and anxious thoughts away. However, no amount of mindfulness and positivity will change the immense pain I endure and magic the mobility and loss of sensation back into my once healthy, sporty, dancing body of mine.
I guarantee my future won’t be how I planned it, but it will be full of determination and dedication to continue raising much needed awareness. 
“A successful person is a person that can build a firm foundation with the bricks that life has thrown at them”~Chloe✨

It’s Okay NOT To Be Okay.

Hey you, yes YOU! Are you sick of being sick. Or tired of being tired? Me too! It’s a totally normal reaction to feeling basically alien compared to ‘normal’ physical or mentally healthy earthlings. Crying, anger, negativity and frustration isn’t a sign of weakness, it’s a sign of staying strong for way too long. It’s okay to feel sorry for yourself. It’s okay to feel as if you’re unable to carry on caring on- our lives are beyond tough, but you are so much tougher! “It’s okay not to be okay” as Jessie J says, but it’s not okay to not have an off day. Grieving over your old life, or grieving in general..believe it or not, it does you good! It’s also common (and expected when you have to live a life battling against your body, mind or both!) Whether it’s mental or physical, without an occasional off day we would never learn what a good day is. We’d never know the difference between happiness and sadness. Most importantly we’d never know how to deal with our emotions, especially individually.. We’d never know what makes us happy on a sad day and we’d never come across or explore self expression, self care and self love. The 3 S’s are imperative in our life in order to survive a terrible day. With the right tools we can turn anything horrible and bad into something good or great! You can do this💪🏼 love, care and express yourself and happiness won’t be far away✨
Yesterday’s example:*takes selfie* 

I look kinda good today, if it weren’t for tubes no body would realise I was really sick. I feel kinda great today-I’m full of confidence, I feel pretty and despite being in agony I am content with my body and how it looks. 
In all honesty yesterday afternoon I look absolutely well and truly awful; the tables have turned. I’m beyond exhausted, running on empty. I didn’t go back to sleep this morning after my meds like I’d usually do. I’d sleep in til 1:30pm have my meds chill a bit and sleep again. I’m usually ‘awake’ by 4-5pm. 
Every inch of my body hurts so bad (as it does everyday) my stomach is cracking and popping- 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. 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 escape from this. I can’t hide. I’m imprisoned in my own body. 
Nevertheless, (as stated above) there’s always something good and great to compensate the horrible and bad in every day. 
My ‘good’ was looking brighter yesterday morning, and my ‘great’ is feeling body confident=chronically stylish💁🏼all day thanks to my mum helping me get changed into my lush sequin crushed velvet cold shoulder top! (I put the matching bottoms on two days ago, I have fashion ocd-I had to match!!) 
What’s your good and great? What made you happy today? (even if it was a terrible day..) comment below to find your hidden happy😌✨
Top Tip-Try writing 3 things your grateful/happy/thankful for, for 21 days. Your mindset, situation or mental health diagnosis may change for the better due to consistency and repetition. 
It’s worth a try🙌🏼

One Step Forwards, Five steps back-This week Has Been Like The Cha-cha!

This week started off great, got bad then got rapidly worse.
One step forward, five steps backwards… it reminds me of the chacha slide! “One hop this time, reverse (x5)”

Monday I had reiki and could feel and flicker my right foot – the aftermath and the healing energy lasted around 18 hours.

Tuesday the central line training nurse signed my mum off so she’s able to connect, disconnect and change dressings without supervision, so I’ll never see her again but that’s a good thing in a way because the less medical professional visits, the more it feels like home! The district nursing team came along with a lovely social-care worker and the continuing care team. They’ve been amazing as the company who supplies my enteral feeding equipment refused to give us any more syringes since I left hospital ( almost 4 weeks ago). We’re using ONE USE ONLY syringes and sterilising them so mum can measure my meds and gravity feed me through my Jejeunostomy. We were advised to bin them but we only had enough syringes to last 24 hours-We use 25+ a day. There’s 30 in a box! so after ALL 7 health professionals making complaints we finally got some, but “it’s too costly” so we still have to use single use syringes for 3 days..washing them with soapy water (which is a massive infection risk) because “if we use a baby steriliser the measurements will come off” but if we don’t, the tiniest bit soap in the small bowel is not a good outcome. Sounds like something small but it’s such a stressful situation. All this cuffufle was happening in between me have weird reactions to paracetamol, yes, you heard that right. I told mum the syrup through the jej makes me go loopy but I was feverish so I gave it a go. I was high as a kite- it felt as if I was on Fentanyl, apparently my eyes were rolling, I went grey and i was slurring my speech. The same happened with the crushed tablets 4 hours later but not as bad! I’m never allowed paracetamol again. I just hope I can tolerate IV in worst case scenario.

Wednesday we met the community dietitian and nutritional and stoma nurse specialist. They were angry (as we were about the syringes) and about the poor post op care I’ve received after gastrostomy and jejeunostomy. I was told to not move my tubes for 3 weeks; after that I only twist the gastric one. When the nurse examined them and taught me how to do it properly she found a complication; which will only get worse (I’ve been screaming everyday with it since I left hospital as it is!) it won’t go up or down or fully twist. they’re almost certain that cells have acclimated and the stomach lining has grown over the disc which holds the tubes securely inside. The only way is to check it out via endoscopy (and cut it out)…which is not a safe option because the last time I had the procedure I vomited into my lungs, ended up in ICU and died and came back to life! My doctors said if I ever need another one I’d have to have GA and intubate which effects my body in an awful way. Surprise, surprise the doctor and specialist gastric nurse in Bristol haven’t phoned back yet despite the urgency. I’m stuck in pain hell.

Thursday I had a meds restock, the weirdest thing happened. The diazepam syrup, oral SOLUTION I’ve had for 10 months was changed to oral SUSPENSION. As soon as I saw the diazepam split when water was added I knew something was wrong. When the diazepam finally got down the tube I started having seizures, which is meant to prevent/ stop them. My body continued to be tight and fit for hours, this time it was different to my normal as I couldn’t hear my mum speaking to me and I struggled to breathe during it, and despite feeling strange normally, the strange feeling I felt was on a whole new level! I had 8 back to back seizures, occasionally I had 30 second intervals were I was gasping for breath and going in and out of consciousness due to the amount of pain, movement, and total utter exhaustion. My memory from the past week and past couple of years wiped from my brain. I knew who I was but didn’t know where I was, what happened to me, or the conversations I’ve just had and so on. I was completely delusional and freaked out and upset by it. Apparently I was trying to grab the walls, and although I finished school three years ago, I was shouting “I’m too sick to goto school mum” then ” I want to goto school and be a normal person, can you take me” while crying. Then my left side of my face went funny, my speech slurred, I felt trapped in my body and I was still having seizures. All I remembered was mum asking if I wanted her to ring an ambulance, shook my head I begged her not to. (Our local hospital is crap, and they couldn’t do much any way.) it also wasn’t a total utter emergency. Meanwhile mum said I was saying I didn’t know what the hospital was, my eyes were fixed and I was hallucinating. After 8 hours it all stopped. We presumed it was just an extreme seizure episode because I haven’t had a severe one for a while, but that was insane- the memory loss lasted 4 hours but slowly came back. Then I had another dose of diazepam and had one big and two little attacks… I then read the ingredients and realised it’s not the exact ingredients as my original one. That’s the problem. This proves my body is extremely hypersensitive inside and out. The doctors have never heard of that happening in their entire career, but it is me they’re talking about!!

Friday, had antibiotics for bladder infection. Allergic reactions to life, and I had more uncontrollable seizures after refusing the diazepam. This time I wasn’t delusional, the fits were just violent; jerking and tearing my G and J tubes😰 it feels like I’ve had the surgery all over again!! I also found out a care company sent out a basin with no draining hose and they won’t send me one out or refund it, which upset me more cause I can’t wash my hair and haven’t been well enough to focus on self love or self care.

EDIT: To top Friday off…my scar has split open! 😳😖

Hopefully tomorrow is better.

Feeding Tube Awareness Week 2017

Feeding tube awareness week this year lands on the 6th-10th of February.The mission of this Awareness Week is to promote the positive benefits of feeding tubes while providing evidence to prove that tubes are a lifesaving medical intervention- not an accessory or private cosmetic detox regime (as highlighted in the media in 2016.)The week also serves to educate the public on how many different forms of tube feeding there are. As well as showing the world the purpose of enteral feeding and the many reasons for why it is needed. 

The theme of this particular week is “Fueling Life” because feeding tubes make it possible for those unable to eat or drink to get the valuable nutrition and hydration they need for life in order to survive. Without it they’d be running on empty and would be severely malnourished and would eventually die.

My aim is to change the stigma. Feeding tubes aren’t just for those with anorexia. They are not just for people going through chemotherapy. They can be needed from birth or randomly, at any stage of your life. Most people are tube fed due to a gastric motility disorder, an autoimmune disease or in my case, Gastroparesis and a Eosinophilic colitis. 
Having a tube isn’t rare. If you see someone on the street with any type of tube please don’t stare or laugh. Smile at them, approach them in confidence and congratulate them. Why? Because they will be so thankful and remember it for the rest of their tubie lives.
Be kind. 

You never know if you’d be needing a feeding tube to save your or your loved ones precious life one day. 
#FeedingTubeAwarenessWeek #Gastroparesis #EosinophilicColitis #FeedingTubeAwereness #FeedingTubeAwarenessWeek2017