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✨

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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