18/3/18 - I am currently selling raffle tickets for the Easter Fundraiser' (information on how to purchase tickets can be found here).


3/3/18 - I am currently going through the process of redesigning this blog so that 'Bravery Bottles' is separate from my personal blog; where I post about my illnesses and life updates..this means that sometimes, my blog may be closed from time-to-time, but I’m always available to be contacted at

Friday, 16 March 2018

Guest posts by B.B. participants - Casper Dawson

I’ve been meaning to write a blog for Bravery Bottles for quite a while, but I haven’t been able to think of an idea that anyone would actually like to read, until today that is. Today was an awful day, and although it may sound like nothing to some of you reading this, it has been a massive thing for me.

I am autistic, so I like routine, I don’t like things not going the way I was expecting them to, I’m not sure why, but I know I’ve always been this way and chances are I always will be. I got up this morning and got dressed, took my medication as usual because my acid reflux tends to play havoc on towards the end of the week, again, I’m not too sure why, it’s been that way for years. I can almost hear you thinking ‘why is he writing this? Is anything actually going to happen? This sounds like a normal day to me.’ And it was, I left the house and went to the train station as usual, already nervous for the journey ahead, public transport has never been my strong point and today I was supposed to be attending my first shift as a personal assistant. Supposed to be being the key term in that sentence.
I got my ticket from one of those far too confusing, totally not built for small people machines and went to sit down on the platform, which was when I heard a somewhat concerning announcement: ‘There has been a train strike on the tracks, all trains to be delayed until further notice.’ Now, this may minorly inconvience some people, but for me it honestly felt like the end of the world. ‘What if I’m late? What if the kid’s in the playground crying because I can’t get there?’ My head started spinning with a million questions and what if situations a minute. I could feel a panic attack coming on. This was when I started to pace.

When I’m pacing, which is one of my main self stimulating behaviours i get funny looks, my friends and family always say i ‘make them nervous’ but when in public, i always get really strange looks, especially when I’m chewing a chewable necklace, which i often do when pacing, it helps to calm me down, but to onlookers it just looks like very strange behaviour. I was pacing and chewing whilst thinking of something to do, surrounded by what felt like 100 people on the platform (however it was probably more like 10) like I normally do, attempting to block out the dirty looks i was obviously getting, it wasn’t working. I texted my boyfriend for advice, he’s used to me worrying about seemingly normal situations. Although he isn’t autistic himself, he really understands.
’Just phone and explain to her mum, it will be fine. I promise. X’ was his response, i was questioning why i hadn’t thought of this myself, but whilst in meltdown my mind is doing everything but thinking of a sensible solution. So that’s what I decided to do, make a phone call to the child’s mum to tell her my situation, she knows I’m autistic and so is her daughter so is very understanding. A phone call might seem like nothing to most people reading this, but to me, especially whilst in a meltdown can seem like the end of the world.

My mind was in overdrive of what to do if she didn’t answer, i wasn’t quite paying attention whilst I was waiting for an answer. It got to the 4th ring and i heard a ‘Hello, Casper? Is everything okay?’ From the other end. She answered. I physically breathed a sigh of relief and explained that there was no realistic way i could get to school this afternoon. She was very understanding and even stayed on the phone to me until I’d calmed down and stopped myself from having the meltdown that had been triggered. I felt a lot better after I hung up, knowing it would be okay and I didn’t need to panic half as much as I already had done.

I am starting my first shift on monday instead. Hopefully I’ll have no issues with public transport then, but if i do, i know I’ll be okay. I’ve proved it today, and i think i certainly deserve to give myself a bead for today. I survived a public meltdown and have come out of the other side knowing I can handle anything public transport throws at me.

Wednesday, 14 March 2018

Easter Fundraiser 2018

Hello everyone! 👋

As you all know by now, I have set up a project - 'Bravery Bottles' ( - for those living with any type of chronic illness, anywhere in the world. In its simplest terms, it is a positivity project aimed at redefining the common definition of 'bravery' within the medical community, by way of awarding yourself for facing fears, completing acts, or overcoming obstacles that are outside of your comfort zone; whether others would agree that it's 'brave' or not.

The project is mostly self-funded, with the added help of generous donations from friends, family, and strangers alike through the project's JustGiving Page (, competitions held online by participants, and events that I've held myself.

However, the amount of applicants to the project has far exceeded all expectations, and with the total number of applicants now edging close to 200 members, raising funds is crucial for the future of the project, and for it to be able to continue to run as it is currently.

So, this is the official announcement for my next fundraiser!

I am holding an online raffle to win an Easter hamper (see photo) in order to raise money for ‘Bravery Bottles’) 

The hamper, (arranged in a wooden box), consists of a ‘Build a Bear’ rabbit soft toy with a carrot outfit, a pair of rose gold earrings and matching necklace, various crafts and hobby related items (including seeds and a small watering can), multiple Easter gifts, and a whole array of Easter treats.

If you would like to enter, I will be selling ‘virtual tickets’ from now, until Easter Sunday (1st April). Tickets cost £2 each (there is no limit to the amount you wish to purchase), and all payments are to be made via PayPal (which anyone can use as long as you have either a PayPal account, or a credit/debit card that you can use to pay with). Once successful payment has been made, I’ll be in contact with your raffle ticket number(s), so please don’t forget to leave your name & a method of contact (either email or mobile phone number).

The direct link to make a payment is

Please don’t hesitate to contact me with any problems and I’ll be more than happy to assist you.

Thank you so much, as always!

Katie xxx

Friday, 9 March 2018

Guest Posts by BB Participants - Jo James

As crazy as it sounds, I have just been down to sit in a little enclosed area on a costal path, that leads to the harbour and I sat, watching and listening to the sea and felt at peace. I live with illnesses that drain my energy, feeling constantly stiff and sore, confused and upset and unsure of the world I now live in. For the past month or so I have been struggling with a bout of suicidal thoughts and feeling as if it would be so much easier to slip away. I am past the attempts, because I know that I have not even the energy for those. Having witnessed the struggle of so many around me who have once too tried to take their own lives, I realise how this is not the way out. Children would lose parents, partners would lose their soulmates and best friends would lose the other part of them. Most of this depression has come from being stuck indoors. Mobility and motivation have felt far away from me and like many people my own age, I have taken to the internet as a source of hope and connection. Yet somehow, this has not been the way forward either. Today I went out as a very last minute arrangement, to attempt to grab some shopping and post a letter. I had some rocks with me, part of a trend that is resurfacing (originally called Friendship Rocks) where people decorate a rock or pebble and leave them around parts of the places they live for people to find. This was what made me chose to go down the path to the harbour, to rehide some of the rocks I had found and post the pictures for others to find them. I placed the rocks on some appropriate surfaces, photographed them and then got to part of the path where I could see a large part of the beach. To me, the ocean is something magical, straight out of a fantasy novel where it teems with so many forms of life that call it home and yet it also seems to have a life of its own. So many parts of it move so differently. The waves can be different shapes and sizes, the currents ever changing. I’ve been so lucky to move close to the sea, close enough to see from a window and know that there are so many beaches close by, so many hours of endless miles of beautiful golden sand and beauty to explore. I have yearned every day that I have been cooped unwell, to be down on these beaches, soaking up all that goodness, no matter the weather and hearing the waves gently lapping away at the nerves and anxieties inside me. It is difficult now to get close enough to embrace this, to lose time searching for treasures like shells and sea glass. My body can no longer so easily take me there, as it used to. It feels so strange to me, how we can feel so alone in the world, can go through so much misery and cling on to life, truly hating it, when we are so close to such beauty at the same time. I have looked out of this window onto the beach and not cared about its existence, seeing it with dead eyes that no longer wish to look upon anything. And yet earlier today I went to it and saw it again, differently. It changed my perspective on life, even if only for a temporary moment. I sat with my eyes closed and let my ears feel it, my body relaxing for what felt like the longest time in ages. I found new hope and courage, just by being near (not even really that close!) to something that made me feel like *me* again, let myself really embrace the calmness and the peace that I felt and realised that low feeling that we get is such a mask. It’s like gazing into infinite blackness, but it is not reality. It’s a state of mind. What I was seeing before me; humans and dogs clambering over rock pools, surfers sitting out on their boards on the water-that is reality. That is real and no matter how many bad days I go through, where I no longer want to feel, when every second feels like an endless test-I know it will be there waiting for me. My happy place.

Monday, 5 March 2018

Guest Posts by BB participants - Alley Daley

Living with Multiple Complex Chronic Illnesses
It’s difficult to know where to begin with this, there is so much I could talk about and yet settling on one subject seems to be so difficult. So, I’m going to tell you about my life, about the ups and downs, and how I’ve managed so far. My name’s Alley and I’m 23 years old; and have a long list of physical chronic illnesses, and a few mental health issues as well. I’m going to list them for you now;
• Elhers-Danlos Syndrome Type 3
• Myalgic Encephalomyelitis
• Gastroparesis
• Postural Orthostatic Tachycardia Syndrome
• Partial Paralysis below the waist
• Chronic Bladder Retention
• Non-Epileptic Seizure
• Cranial Cervical Instability
• Irritable Bowel Syndrome
• Depression
• Anxiety
• Complex Post Traumatic Stress Disorder
I didn’t add my autism to the list because for me, I don’t see it as a mental health condition or illness, it just means I see the world in a different way, and sometimes this can impact on how my other conditions affect me. For example, the sensory (light, sound, touch, smell etc.) sensitivity caused by my ME is exacerbated by my autism. However, my autism causes me to have many good qualities such as creativity, attention to detail, honesty, loyalty and observance. People with autism can be good at being non-judgemental, analytical and good with animals. I have written a more in-depth blog post about autism on my own blog, which I will link to at the bottom of this post. 
I’ve had some health issues all my life (including some joints dislocating and abdominal pains,) but the main problems started for me after a horse riding accident I had when I was 17 years old. Before the accident I was an A grade student, who was working with horses and hoping to go far in the equine world. I was fit and relatively healthy, I had a decent group of friends and a good life. 
Since the accident, things have been up and down. Long stays in hospitals have become the norm, both for physical and mental health problems, and although my mental health is much better controlled than it used to be, my physical health is on the decline. 
I’ve had feeding tubes and still have severe difficulties with eating and nutrition due to my gastroparesis. Each mealcauses severe pain and nausea, and whilst I’m maintaining a healthy weight, getting nutrition into my body is one of the most difficult and miserable tasks of the day. I get through by eating fairly plain food like scrambled eggs, and drinking fruit juice to keep my sugars up. But if I even drink that too fast the nausea is unbearable. However, I’m so grateful that my feeding tubes saved my life, they brought me up to a decent weight from being underweight and very poorly (I’m still very poorly but nowhere near as bad as I was just before I got the tube.) I’m grateful for being able to manage to keep weight on without the tube, but sometimes I miss it, due to the fact I didn’t have to experience such terrible symptoms whenever I was fed because the tube bypassed my stomach.
I have a relatively severe case of Myalgic Encephalomyelitis, which is a neurological condition that affects my brain and spinal cord, causing severe fatigue, sleep problems, cognitive issues, dizziness and fainting, muscle pain and weakness, digestive symptoms, sensory sensitivity, flu-like symptoms, post-exertional malaise and so much more. In my severe case it causes seizures and partial paralysis too. I have had ME for almost 6 years, it was triggered by my accident and I’ve had periods of being completely bedbound for months on end. Luckily now I’m able to sit in my wheelchair for a few hours a day, a couple of times a week. I sometimes also spend time laid on my sofa when well enough, so I can maybe watch a little television. ME is such a difficult thing to cope with, especially as there’s no cure and doctors often say ‘there’s nothing more we can do for you.’ However, I’ve met some amazing friends through having ME and it’s taught me a lot about patience and perseverance.
My other main condition is Elhers-Danlos Syndrome, Hypermobility Type, which is a connective tissue disorder where collagen is not produced correctly in the body. It causes joint pain and dislocations, fatigue, soft skin which can bruise easily, digestive problems, and so much more. Gastroparesis and Postural Orthostatic Tachycardia Syndrome (increased heart rate when changing position from lying to sitting or sitting to standing) are both comorbidities of hEDS. My diagnosis was a very special moment for me as it explained all the problems I had as a child. Since my diagnosis I’ve been welcomed into the chronic illness community with open arms, and as EDS is a rare condition, it’s great to meet people who also go through the same struggles as me.
So, how do I cope with all this pain and illness? Well I love animals, they make up a huge part of my life and although I’ve had to downsize my numbers of animals due to poor health, I still have 4 cats, 4 rats and 2 hamsters left. The cats are called Bagheera, Winnie, Boots and Toothless; the rats are called Eeyore, Bear, Velvet and Suede; and the hamsters are called Ariana and Walnut. The cats especially help me through the long painful nights, and Bagheera can detect when I’m going to have a seizure and alerts me, stays with me through the fit, and then claws me to help me come around. It’s amazing what animals can do and how much of an impact they have on both physical and mental wellbeing. I also love graphic design and crafting with polymer clay. These hobbies are a distraction from the everyday grind, and really help me to relax and think about something other than medical things. 
Bravery bottles has helped me too, I’ve been making bracelets (when my hands allow me to) to sell and raise money for all the amazing work Katie Fant does. Keeping track of my acts of bravery with beads has helped me realise just how much I get through each day and how determined I am to keep going despite the circumstances I’m in. Katie has become a great friend to me and the recent ‘design a bag’ competition has been great to participate in. Thank you so much for letting me hijack your blog Katie, and I hope you’ll return the favour by writing for Alley’s Adventures!

Friday, 2 March 2018

Guest Posts by BB Participants - Annie Plant

Living life as an outsider in my own family has caused me to feel like an outsider to the world.

At school I started to depend on people while being cripplingly afraid of others. I was always frightened of anyone it didn’t matter if I knew them or not, nor if I trusted them or not, I was terrified. I spent 18 months crying everyday about leaving the house. If anyone got cross or shouted, I would freeze in fear or run away. Here came the start of not wanting to go to school, not wanting to leave the house. Things got worse in school - I was going, but crying every day. 

Then the bullying started and my fear of people got worse. I was awful to be around. I was so scared and lashed out at people to keep myself safe. I got in trouble alot and so was shouted at alot which made things even worse. I was living a life of fear. 

Because of this I moved primary school 6 times and we decided that I’d undergo intensive treatment and exposure. That was awful for me and I hated going. But I still went anyway as I didn’t want to be terrified anymore; I didn’t want to live in fear anymore. 

I started high school feeling safer and less afraid of people but I was with a member of staff at all times to help to encourage me to be safe. I became dependent on this staff member though, and when they left I fell apart and unsurprisingly, I developed a greater fear of people again. I would have my set routes around school, and if anyone spoke to me I’d collapse in a heap and not move until I was found. I underwent another intense course of treatment to overcome my fear, but I was terrified of going back so only went to 3 sessions out of the 12 as i couldn't cope with the intensity of it.

I went back to high school after a week stay in hospital due to having a breakdown. I came out of hospital and had a pretty horrific event happen that im not going to describe here as it may not be appropriate to do so, but it meant another hospital stay and more treatment (but for something else this time). Going back to high school was so hard; I was also about to start my GCSES and oh my days I was not ready or up for sitting them, but I didn’t not want to take them. Because of this, I had an individual room and 4 members of was horrible and i hated it. But I did them all of them and went on to college. 

Fear-wise things got better but i was in a lower mind set and the suicial thoughts and feelings got more extreme and worse - I was planning my death every day and it was horrible. I was in a dark place and got with the wrong group of people and everything fell apart. I’m even getting emotional as I write this now and I’m skipping out a chunk of time that I would rather not remember and moving on to now.

I’m still very afraid of life. I’m slowly getting stronger but I’m currently in a very dark and dangerous place. I’m generally not 100% safe everyday but I’m getting there; I’m less scared of people shooting me in the face. I’m so scared of leaving the house and that’s a huge sense of anxiety and I guess that my life will just be like that for now.

Wednesday, 28 February 2018

Rare Disease Day 2018

Today, traditionally being the last day of February. is ‘Rare Disease Day’, raising awareness of, but more importantly, making decisions about, the rare diseases that so many of us live with, and highlighting the impact that these decisions have on our lives. 

In Europe, a Disease is classed as ‘rare’ is it affects less than 1 in 2000 people, with more than 6000 recognised and documented conditions being classed as ‘rare’. This means that 1 in 20 people will live with a rare disease at some point in their lives; more often than not, a cure not having been found for the disorder or condition. Not having a cure is one of the thing that those with chronic, rare illnesses struggle to come to terms with the most; the reality that the symptoms they have, will be there forever. 

There is continuous debate about the illnesses that are characterised as ‘rare’, especially when it’s an illness that is predicted to affect so many more people than are officially diagnosed. A rare disease could affect literally a handful of people, but could also include hundreds of thousands of people. Symptoms can lie on a spectrum to undetectable (and hence under, over, or mis-diagnosed because of the lack of fault gene not yet being identified), to illnesses that are disabling, life-limiting, life-threatening, and debilitating to the point of complete reliance on someone else. 

In my eyes, whether you have a condition that’s rare or common, officially diagnosed or not, with the genetic fault identified or not, whether there’s a chance of the disease going, whether there is treatment to control it or even cure it, or if you have a condition that will be with you for life, there’s no right or wrong way to deal with it. Everyone comes to terms and adapts their life in their own way, and this being the 6th Rare Disease Day that I personally am ‘celebrating’ as a person with a rare condition. 

Many will know me as the ‘old Katie’, especially those who I sent to school with. They’ll remember the person with no illness, who could walk, talk, study, communicate, participate and live the life of any person my age. Those who I knew a bit mater will remember the starting of me becoming ill; allergies, epipens, and far too much time spent in Student Services! Later on from that are the people I met at uni - at the start of both years I attempted! - who knew of me being ill, having multiple ambulances called, and so selflessly took on the role of looking after me when I wasn’t well; an occurrence that became too frequent to continue with my studies. The people I’ve met since, who have known me from day 1 as wheelchair bound, severely unwell, and: feeding, breathing, urinating, and administering medication through tubes and lines - many of which have saved my life on a number of occasions. 

I’ve been thinking and thinking about what to write about this rare disease day, and I’ve decided that I want to firstly just briefly mention how grateful, proud, busy, yet purposeful I feel since starting ‘Bravery Bottles’ - a project of which many of you will know of by now, seeing it on my social media accounts. I didn’t for 1 minute expect to have the response I have got from it, but with over 150 members; 100 of which being part of the loveliest, most supportive, understanding support group. The only thing that we, as participants of the project have in common, is a chronic illness. Given that there is no restrictions on what these illnesses are, a lot of strangers have been brought together, and out of it has blossomed some beautiful friendships. 

The other thing I wanted to mention, are the friends that have known me since age 14, long before I was ill, and have stuck by me ever since, not once letting my illness change the way their perception on me as a person and have never once made me feel left out or not considered my needs when making plans. They’ve been there to give Epipens, call ambulances, speak to my parents, visit me in a multitude of hospitals, driven miles to visit me, included me in every conversation, been there to cheer me up when I need it, and quite simply, have just been the best friends I could ever have wished for, in the situation I’ve found myself in. Sian, Claire, Shelby & Amy; I don’t give you girls enough credit for difference you make to my life. The bond we all have is so special and one that I know will last a lifetime; I just wish there was a way for me to show you how much you all mean to me. Thank you for being the best friends, and for letting me just be ‘Katie’ when we’re together. I love you all lots & lots. 

So, back to Rare Disease Day, show your support, donate if and what you can (you’ll be surprised what a difference even £1 can make when it comes to charity projects), appreciate that there are lots of people suffering; even if you may not see it, and most importantly - show that you care for those who are rare. 


Monday, 26 February 2018

Guest posts by BB participants - Julie Barrett

Hi everyone. I’m Julie, I’m in my mid thirties and live in South West England. I have multiple health conditions that have mean I need to use a wheelchair full time and rely on family to help me with day to day things that most people take for granted. Over the last eighteen months or so my health has rapidly deteriorated. Apart from a weeks stay in hospital recently, I’ve not been able to leave my bedroom since early November 2017 (I’m writing this at the end of February 2018). That’s the boring, depressing stuff got out of the way- now I’d like to introduce you to the chap who gets me through the tough times, keeps me safe, helps me with everyday tasks and saves my life on pretty much a weekly basis. Please say hello to my assistance dog Elgin.
He is a three and a half years old Labrador who was trained by an assistance dog charity called Canine Partners. Elgin has completely transformed my life, and has saved my life by on numerous occasions by fetching help when I am choking and losing consciousness (I have problems swallowing due to a medical condition ). Several when I’ve been home alone and choking Elgin has managed to save me himself by thumping me in the back with his head or paws then nudging my throat hard with his nose, he then frantically licks my mouth (it’s gross but it makes cough and splutter and start breathing again so I don’t mind the grossness lol). We think he’s learnt to copy what Mum does to stop me choking which is incredible. 

He's given me back some of the independence I lost when I became a wheelchair user and is my little ray of sunshine. He helps me with things like dressing and undressing, fetches the phone when it rings, picks up dropped items, gets things off low shelves in shops for me, opens and closes doors, raises the alarm if I fall when transferring to my wheelchair and dozens of other tasks. He also alerts me to low or high diabetic sugar levels, and he alerts me about ten minutes before I have a severe muscle spasm or seizure. This gives me time to take some medication so that the spasm isn't as bad and doesn't cause as much damage - they are so violent that they often dislocate my joints. 
I’m currently fighting severe repeated infections and feel very ill with it and very low mood wise. I’m being treated at home with daily nurse visits as I don’t cope well with hospital stays (I especially hate being away from Elgin). He is what’s keeping me going - I’m determined to be back to my ‘normal’ soon so that I can enjoy spending time with him outside of the house. Love you boy, you’re my hero.

Friday, 23 February 2018

Guest posts by BB participants - Meghan-Alice Hughes

Hey everyone, what I want to talk about today is being an adult with Autistic Spectrum Disorder. Now a lot of people might be like “there’s nothing special about being an adult with autism?!” but to me there is! There’s this particular feeling you get as an autistic adult that you can’t replicate. It’s the balance of being treated like an 8 year old whilst also being expected to act like everyone else your age.

I wanted to write this more as a “please stop expecting so little and yet so much from us” to the people who know us. (obviously this post is made from my own experiences, but they are ones which I have shared with others my age/older who have said they have also had these experiences/share these thoughts)

I see people my age on social media everyday doing things I could never ever do, and yet they’re things that are almost expected of me. Things like going into town on my own, a common thing to do for a “regular” 25 year old and yet is one of the most terrifying and meltdown-inducing things I could ever think of attempting. Things like going out to bars and clubs, another thing that makes me want to crawl into a hole where no one could ever possibly find me.

But also things that people my age have been doing for most of their lives that still cause panic attacks in me, the main one being brushing and washing my own hair. An everyday, normal thing for most people, yet something that causes me an immeasurable amount of stress everyday. I’m lucky now that my fiancée does my hair for me everyday so that it always looks presentable , but until last year I washed my hair every other day and had a panic attack every. single. time. But now she washes it for me, which still causes stress but so much less than doing it myself. And she brushes and styles it for me so I don’t have to do anything. (i’m very lucky)

However when people find these things out I can see how it goes in their head. The “well she’s 25 but my 6 year old can brush her own hair…maybe I should treat her more like a child.” And to those people I have one thing to say; please stop.

I am not a child. I am an adult who struggles. I am not your six year old. I am 25 with a master’s degree, and yes I might not find it in me to be able to do certain things you expect me to do, but I do not need to be treated like less of a person for it.

Not being able to go places on my own without feeling terrified isn’t fun. Not knowing that i’m meant to respond, or how i’m meant to respond when people talk to me isn’t fun. Not finding it in myself to fight off a panic attack to be able to do my own hair isn’t fun. And neither is being judged for these things.

Sometimes it feels like autism takes a lot away from me as an adult, but sometimes it gives you so much more than it takes.

For example, i’m so good with the girls at rainbows and brownies because I share a lot of their interests. I’m good with animals because it’s easier for me to understand them sometimes than it is other people. I’m honest, and everyone knows that if I say something to them I mean it. And it’s given me an amazing community to be a part of, the asd community i’ve found on instagram (find me @otherkindofnormal)  has made this whole entire mess of feeling left out of my own life feel better. It used to feel like I was watching life happening and never knew how to make myself fit in with it, like no matter what I did I was on the outside. Feeling closer to people younger than me but expecting to socialise with people my age who just didn’t get it. But now I have this whole group of people that get it like really truly get what’s happening, and honestly after 20+ years of feeling left out – it feels amazing!

Monday, 19 February 2018

Guest posts by BB participants - Hayley Tackett

Hi my name is Hayley and I’m 20 years old, but my story starts way before right now. 

As a baby I was very sick and my knees dislocated since before I could even walk with no explanation. I’ve had 6 surgeries to correct that as I’ve grown through the years. At the age of 13 I was diagnosed with Endometriosis, and two years later another major tragedy seemed to strike. I was have major hip pain, that nobody could explain besides telling me it was all probably in my head and that I just wanted attention(all of this while I was in the hospital for a month). 

At 15 (almost 16) they said they were going to send psych in and probably have me committed. Soon after 3 am someone came in my dark room, and said he didn’t even need to examine me; that he already knew what was wrong. I look at my dad like “Here we go!” And as my dad started to shut him down. The doctor said “Hold on, let me explain. I’m a rheumatologist, and your daughter has Juvenile Idiopathic Arthritis and that has been what she’s been dealing with her whole entire life, that’s why everything dislocates.” That’s what I got for my 16th birthday, someone that finally believed me and knew I wasn’t lying!! 

Still 4 years later, were looking for the proper medications for me, I’ve been on over 27 different arthritis medications throughout the years. Currently I’m on infusions of Remicade (chemo) and a high dose of steroids every 4 weeks, as well as methotrexate shots weekly. Plus all of my other 17 meds. 

And I’m going to be a camp counselor for kiddos with chronic illnesses this summer. To show them that your illness doesn’t own you. I also run a support group with almost 200 members on Facebook. Without all of this, I wouldn’t be who I am today!

Tuesday, 13 February 2018

Feeding Tube Awareness Week

As last week was 'Feeding Tube Awareness Week'; the purpose of which obviously being to raise awareness of living with a feeding tube, something that doesn’t happen by itself. Living with a feeding tube isn’t how people usually perceive it, and amongst everything else in terms of my health, nutrition and feeding is something that I don’t talk about as often as the rest of my tubes. My feeding tube is just 1 of the 4 long term medical adaptions which essentially keep me alive, yet my feeding tube is one which I don’t tend to focus on as much as the others.

I think that it’s crucial to begin by saying that firstly, there are lots of different forms of artificial nutrition, and secondly, which is perhaps of bigger importance, is that there are lots of different reasons to require a feeding tube. Obviously, ultimately, it’s to enable proper nutritional intake, but the reason for not being able to take nutrition orally differs from one person to the next.

Without going into too much detail, there are 2 different types of tube (each having different sub-types however); nasal tubes, and surgically placed tubes. The destination of these tubes (e.g. stomach, bowel etc.)

Personally, I’ve had a variety of different tubes since becoming ill. For the first few years, when my diagnosis wasn’t clear, I dipped in and out of being fed by tubes temporarily; when I was going through a bad flare in hospital. For a long time, I was fed through a naso-gastric tube (also known as an NG tube) when I was particularly unwell, but could always go back to food as the flare started to pass.

As my gastro-intestinal problems got worse, and eating became more painful and brought on more symptoms, so did the NG feeds. I went through times of needing a tube to aspirate (drain) the contents of my stomach, using a tube called a Ryle’s tube - which is essentially a thicker NG tube that takes contents out of the stomach as opposed to putting it in. The problem with this then turned to nutrition again, and as I could no longer be fed through my stomach, I had an NJ tube placed. This is still a nasal tube, but it goes to the Jejunum - the start of the small bowel - by passing the stomach but still providing adequate feeding.

Nasal tubes aren’t a long term solution, and when a diagnosis points towards malnutrition being a long-term problem, surgical tubes are usually placed. This can be done via endoscopy or x-ray, and again can be placed in a few different places, but ultimately the difference wtith these tubes is that it does not get passed through the nose, and instead via a surgically made stoma.

In December 2016, my consultant decided that a surgically placed tube was the best option for me going forward, and it was then that I had a RIJ placed. This stands for ‘Radiologically Inserted Jejunostomy’, and in simple terms, is a tube that is placed using X-Ray in the Interventional Radiology unit at the hospital, and is placed into my Jejunum (small bowel), bypassing the stomach.

This is the tube I have today, although it still isn’t as straightforward, nor successful as you’d assume. I find feeds hard to tolerate still, meaning I have to feed at a very slow rate (the equivalent of 4 teaspoons of feed per hour). This isn’t ideal because, to meet my nutritional requirements, I have to feed over 20 hours per day with only a 4 hour break. In an ideal world, the usual protocol is to feed overnight so that I could be tube free all day, but unfortunately for me currently, I can’t withstand the higher rates of feeding condensed into a shorter time frame.

Looking forward, I hope to reach a point where the RIJ becomes a successful way of feeding for me, but, as things stand, the prospect of requiring TPN (Total Parental Nutrition) - a way of administering nutrition that is tailored to your exact requirements through a central line) is becoming more real. I hope to be able to avoid this, but, it’s a waiting game to see how much my body can tolerate as the volume of feed I am given through my current tube is gradually increased.

My feeding tube, apart from nutrition, is a way for me to gain the hydration I need (water can be run), but more importantly, is the way I receive the majority of my medication given that my stomach doesn’t work efficiently. Without my tube, not only would I not have efficient nutrition or water, but I also wouldn’t get my meds - some which are vital to keep me alive.

It’s another situation in which another tube in my body is not something I want, but it’s something I need, and know that without, I would be in a much worse position. I’m grateful that medical advancements and our National Health Service means that I can live a fairly normal life, albeit with a tube, but a tube that keeps me alive.

Monday, 12 February 2018

Guest posts by BB participants - Chanel Sambrookes

Fibromyalgia - guest post by Chanel Sambrookes

So the thing I’m going to write about is my illness and it’s called fibromyalgia syndrome (FMS) or known as fibro for short and fibromyalgia is a long term condition that causes wide spread pain from head to toe, aswell as widespread pain it has a lot of other problems that come with it. 

Common problems include: 

Extreme fatigue
Problems with mental process known as ‘fibro fog’ 
Muscle stiffness 
Irritable bowel 
Sensitive bladder 
TMJ problems (Tempomendibular joint) 
Increased sensitivity to pain 
Any many more 

There’s no exact cause of this illness but triggers and doctors aren't very educated with the condition which can be so annoying as they put EVERYTHING down to it and tends to put you down! They sent you to Physio which makes it a lot worse they say ‘oh you need to keep fit’ it’s ok them saying that but unless your going through it you don’t know what it’s like and how you pay for it the next day by not being able to move and function! 

I only got diagnosed with this in October but since being diagnosed it’s all made sense thinking back to when I was younger it’s crazy to think Iv been like this since the age of 7/8 and only being diagnosed at the age of 18! (I’m 19 Now) also! There’s no test to diagnose it either! They have to do multiple tests to rule out other illnesses first such as autoimmune disease and Rheumatoid Arthritis ect not enough research goes into this and it’s sad because it needs to be taught so people have more of an education about it instead of them just saying 
‘oh your tired’ 
‘Take painkillers you will be fine’
‘It’s in your head’ know things like that! But oh well ay! Tomorrow’s a new day! 

Thanks for reading don’t know if I done this right I've never blogged before haha! But was worth a go! 

Friday, 9 February 2018

B.B. participant fundraising - Megan Whitehouse

Have got an extra special 'thank you' to make to Megan Whitehouse, who is a participant of Bravery Bottles, having multiple chronic illnesses herself. 

For the past couple of weeks, Megan has been selling 'names' for a 'Guess the name of the bear' challenge, all money raised in aid of Bravery Bottles. Megan chose the teddy and it’s name in advance (which only she and I knew!), and she came up with a list of 40 names; the real name obviously included in that list. After uploading photos of the bear (in its own wheelchair too!), she published the list of names, and sold each ‘name’ for 50p. Once all 40 names had been sold, Megan then announced the real name of the teddy - and the person who had paid for that name was the winner, and has been sent the bear & wheelchair as the prize.

Megan organised the fundraiser completely on her own, exclusively for the purpose of fundraising for the project. As the project has grown, it has needed increasing amounts of money invested into it. I’ve had so many generous donations on top of the couple of fundraising events that I’ve held - and I’m so grateful to everyone who has helped/donated in any way. However, the project is becoming more and more well-known, which means more people signing up to be part of it (which is incredible!). As a result though, the more people participating, the more money required - for stock, supplies, postage and shipping fees, awards, printing, admin fees etc., all essential to keep the project up and running, and running in the same way as when it was created; free of charge to any person, with any chronic illness, anywhere in the world.

It’s thanks to Megan, and other members who are in the process of holding/organising fundraising activities like this one, that the project has become as successful as it has. There are so many people who want to contribute to the project, but are simply too unwell to attend the events that I hold or to hold events themselves, so raising funds online through competitions and draws like Megan’s, means that more and more chronically ill people are able to sign up and benefit from a project that rewards the bravery they undoubtedly show, as a result of the challenges that come with having a lifelong illness.

Megan - thank you so much for your fundraising. You’re an asset to the project and I’m so grateful for organising and holding the event and for the money you raised as a result. Congratulations too to Alex - the winner. The bear’s name is Cookie, and I’m sure will be well looked after in its new home🙂

Monday, 5 February 2018

The parts of Chronic Illness that leaves invisible scars

Part of the process of setting up 'Bravery Bottles' has involved looking back over the past few years, and even further, to write about my childhood and the plans I had for the future; "I had plans to finish school, get the A level results I needed, graduate from Uni, and ultimately, become a Lawyer", I found myself writing. "Life seemed to have different ideas though, and it was aged 16 that I became ill." It was this sentence that stopped me in my tracks, and made me realise something that I hadn't realised before now..
Although I say that I ‘became’ ill aged 16, looking back, I was showing symptoms from a much earlier age; just not to the extent of anything out of the ordinary, and my various injuries and ailments over the years were just dismissed, as anyone would, as ‘normal’ (albeit clumsy) childhood ailments. It was at age 16 that I suffered my first, life threatening allergic reaction, and my health has been on a downward spiral since then, but whenever I talk to anyone about my illnesses, I tend to automatically tell them how I suddenly became unwell, aged 16. Looking back though, this isn't strictly true.

I've displayed symptoms of this illness all of my life, its just the ailments that tend to present first, are ones that often (and quite rightly) get dismissed as 'normal'; injuries and illnesses that aren't uncommon as a child. This got me thinking, not only of the physical effects that chronic illness has had on my body, but of the mental and emotional impacts; the 'invisible' scars that have been left, that even I hadn't noticed.
For as long as I can remember, I have always been a very ‘academic’ person; career-driven and motivated by exam success, school was never a chore for me - especially as I transitioned from my small, well-known, friendly primary school, to the all-girls Grammar School I’d always hoped I’d be accepted into. As my studies expanded and opportunities widened over the years, so did my future job prospects, and after exploring the options of teaching to translating, I eventually had my mind set on becoming a lawyer; a goal that kept me motivated, interested, and focused all the way through my GCSEs and into the start of sixth form.
It was at this point though, barely 2 months into my A Level studies, that life seemed to have different plans set out for me than the ones I’d developed and set out to achieve. I’d just turned 16; a time where academically I’d gained a place at sixth form to study the subjects I’d so carefully picked, when socially I’d found myself in a friendship circle that was only expanding, and at a time where developmentally, I was moving out of childhood and into adulthood, that I was struck down by a deterioration in an illness that I'd had since birth, but for some reason, had only become problematic when I reached 16. To make it harder, at the time, the illness was a complete mystery, and remained so for a further 4 years. 
Even harder though than the illness itself, was dealing with the effects of the illness. Physically, my body being pumped full of life-saving drugs on a regular basis; with no one having any idea of how gain any control over my symptoms; let alone stop them. Seeing my appearance changing by the day because of hard-hitting drugs - steroids that caused rapid weight gain, chemotherapy drugs that caused dramatic hair loss, and anti-rejection transplant drugs that wiped out any trace of immune system I had left, all with very little to no improvement in my overall health. 
Mentally, being forced to adapt to a life where I spent more time in hospital than at home, where the life-threatening nature of my symptoms meant frequent and necessary admissions to Intensive Care - a place where people of all ages were comatose and being kept alive by machine upon machine, seeing people of all ages take their last breath, couples arranging last minute marriages - the groom from his bed before his imminent death, both successful and unsuccessful attempts at CPR by a ‘Crash team’ of anaesthetists, overhearing conversations about newly diagnosed terminal illnesses that no one wants to hear, let alone be put in the position of discussing, and witnessing families being ripped apart by heartbreak and grief at the loss of their loved ones - all such mentally scarring and hard-to-process situations that no one should ever have to experience at any age, let alone at the tender age of 16 - the age when I first found myself experiencing these situations.

And finally, the emotional impact that it had; perhaps the hardest part of all and the part that has left the most scars. Just reaching the age of being given more independence, more freedom, and the chance to gain more life experience, snatched from you in front of your eyes. The feeling of being ‘left behind’, as you see the friends you’ve grown up with, transition from childhood into adulthood, from school to college/sixth form and university; graduating and venturing out in the world. Going from living with their parents to becoming parents, just at a time that my life was interrupted; my plans stopped in their tracks by a mystery illness, which converted my blossoming career as a high-flying lawyer, to a long-term hospital patient, the only expertise I have being in my own illness.
Now, aged 21, I have deteriorated to the point of needing round the clock care. I will achieve all that I want to; and I will eventually graduate with my law degree - however long it takes. But I've come round to the fact that good health, quality of life, and spending time with those who are important to you, are what matters in life. In terms of my illness, I do have better and worse times; classing the ‘better days’ as the ones where I’m able to leave my bed and get around in my wheelchair. A lot of the time though, I am bed-bound, which was the reason for extending my blog and starting ‘Bravery Bottles’ - to give me a hobby, distraction, and to meet and bond with like-minded people, all suffering from chronic illness like me, and its been one of the best decisions I've made. 
I can only hope that its a project that continues to develop and grow over time, because the more people that can benefit from it, the better💜

Doughnut Sale - thank you!

This is just a huge “thank you” to everyone at Blackfen School who came to my doughnut sale last week, or donated some money, in aid of ‘Bravery Bottles’.

The support I always get when I hold an event at school is phenomenal - the students just want the food; completely understandable and relatable from charity events that were held when I was in their position! But combined with the staff who know me, or know of me through mum, or who are interested and willing to learn more me/what I do, the final result is always one that makes a huge difference to the project.

It’s really hard to gauge the amount of food to bring to a fundraiser - especially at school. You can’t ever tell how many girls will turn up, how many will want to buy what you’re selling, how many students bring money to school, whether they’ll still be hungry after only just having their lunch etc etc but, in general, at the end of each 50 minute event, there’s very little that hasn’t sold, but that’s after I’ve sent my loud-mouthed, known by everyone, scary, bossy mum round to sell whatever is left at a discounted price!

When I was buying the doughnuts this time I was completely stumped by how many to buy; trying to guess how many teenage girls would be interested in buying £1 doughnuts on their lunch ‘hour’ is harder than you’d think.. I was trying to work out in my head how many, realistically, I’d sell. My estimate? 100. Reality? Closer to 1000! This sale was by far the quickest I’ve ever held. In less than 15 minutes, I’d completely sold out, leaving a queue of girls doughnut-less and disappointed, but the ‘Bravery Bottles’ fund up by £140 - an incredible amount raised. 

This fundraiser taught me a couple of valuable lessons: 1) Doughnuts are VERY popular, but 2) they sell out VERY fast. So, in the future, I’ll regularly be having ‘doughnut sales’, the only difference being that I make sure I’m armed with a lot more than 100 doughnuts!

Saturday, 3 February 2018

Design a bag competition

This is a competition that's running at the moment, which, divided into separate stages, gives participants the chance to create a design that is printed onto bags and sold. 

There are a number of rounds involved from the initial submission, to finding an overall winner, which are detailed below:

Stage 1: [ENDED] - participants to submit their designs.

Stage 2: [ENDED] - All submissions have been uploaded and published, open to anyone to purchase. Out of the 20 designs, only 8 will continue into stage 3, so participants will be encouraging whoever they can to purchase their designed bag!

Stage 3: [CURRENT STAGE] The 8 finalists will then have their designs subject to a public vote; the 4 designs with the most votes at the end of this stage will technically all have 'won', but there is a final stage to determine which place, and which corresponding prize they have won.

Stage 4: This final stage, as mentioned before, is to order the winners and award the prizes. For this to happen, the 'shop' will re-open for the final time and for the final chance to have people put in orders for your bag. Running alongside this will be another vote this time only for other members of the project. 

The amount of purchases from round 2, combined with the public vote in round 3, added to the number of final purchases and private votes in round 4, will determine what each person will win.


All 20 entrants, regardless of the amount of sales made, will receive a bag with their design printed on it, as a token gift for entering,

8th, 7th, 6th & 5th place, on top of receiving their bag, will get a framed photo of their design with a certificate, bonus charm, and 'BB Bargain bag' (necklace, suction hook & bead pot) - usually available in the BB shop.

4th, 3rd, 2nd & 1st place = designed bag, ornamental heart, personalised keyring/necklace, & a bonus charm


4th PLACE - 6-month magazine subscription
3rd PLACE - Afternoon Tea for 2
2nd PLACE - Makeover & Photoshoot for 2


So, to all participants - good luck!

To everyone else, please get involved by purchasing and voting for your favourite bags, and follow the project through until the 1st March to find out the winners!

Thursday, 11 January 2018

Doughnut Sale Fundraiser

For the staff and students at Blackfen School for Girls - my next fundraiser in aid of Bravery Bottles is at the end of this month; 29th January. I’ll remind you again closer to the time, but put it in your diaries; I’d love to see you all there!

Wednesday, 3 January 2018


Sorry this post is a few days late - I’ve been SO busy the past few days, doing everything and nothing at the same time! I had intended to write a long reflective post on 2017; talking about all I’ve been through with my health,  and also set myself some goals for 2018. Everything I would have wrote is quite predictable though, so instead I thought I’d do something slightly different, and write down 5 lessons I’ve learned in the past year.
2017 has taught me that:
  1. Family are everything - the only people you can trust to stick by you through the good, the bad, and the ugly, and when everyone else turns their back on you, you can always rely on your family to be there for you no matter what. I’m so lucky to be surrounded by the most amazing family I could ever wish for, who give me the best quality of life possible with the care they give and the things that they’re willing to sacrifice for me. 
  2. Your health is the most important thing in life; and your mental health is as important, and needs aa much care and attention as the rest of your body. Living with a chronic illness means you get to know your own body, your own symptoms, and your own ‘normal’ better than anyone else, and even when it’s in your nature to be selfless, at times you inevitably have to be selfish and put your own physical and mental health first for the sake of your own sanity and wellbeing. 
  3. Cherishing the time you have with those who mean the most to you is essential, because unfortunately, nothing nor anybody lasts forever. Take photos and make as many memories as possible, because even though in the short term they may hurt, in the future, they will make you smile and get you through the hardest times. Losing someone who is such an important part of your family and such a big part of your life is so difficult and grieving is vital to accept and come to terms with life without them. 
  4. Chronic illness can ruin even the most organised, well thought-out plans, so always have a plan B, because not having a plan at all is simply not an option (and can be detrimental on your mental health). Having something that’s a distraction - whatever that may be, and whether it’s what you originally planned or not - will get you through days, weeks and months at a time, with a feeling of purpose and worth. 
  5. Friends come and go when you least expect it, but when life gets rough, your true friends will shine through. It’s those friends that are there for you no matter what, who you can talk to anything about, who you can go days and weeks without talking to and it not make a difference to your friendship, and can go weeks and months without seeing and pick up where you left off as if it were yesterday, who never judge you for who you are, nor let any part of your illness change how they act around you or about you. 
This year has certainly been a a rollercoaster of ups and downs, and without being too negative,’it’s a year I’m glad to see the back of. However, it’s very easy to have the bad parts cloud your thoughts and blur the good parts. The most prominent things that stick out of this year are the many surgeries I’ve had, including both thumb fusions, full dental clearance, more central lines including yet another portacath, Hickman lines, PICC and midlines. This year my health has  deteriorated to the point I’m at now; reliant on my port multiple times per day for self administered IVs, a PEJ tube for my nutrition and the remainder of my meds, and an indwelling urinary catheter for my failing bladder.  I’m also completely wheelchair bound now (having been unable to stand without fainting within a few seconds at any point this year), and am now even more reliant on my family for round the clock care. 

However, you forget the ‘little’ things, such as finally receiving the level of care in the community that I need - which as a result has meant my one and only hospital admission was February last year - a massive step forward in itself. Having been able to spend so much time at home has meant being able to do the things I enjoy, plan things in advance, and invest my time into things like my blog and ‘Bravery Bottles’ Project. 

Above all else though, this year will obviously be remembered as the year we lost our beautiful nanny. She’s missed more than she would ever have imagined she would have been, and is thought about by all of us every second of every day. She fought a long and hard battle, and in the end, the suffering she was being put through made her death a welcome relief, not only for her but for us too. That doesn’t make it any easier though and she’s most definitely left a hole in our family, but a hole that I know, over time, will get filled with the happy memories and love that so many people remember her for. 

I’ll round off this post by saying thank you, to every single one of you. Just knowing that people are reading my blog is amazing, but the support that comes off the back of that, in the form of messages, post, donations, participating in my project, sharing my blog on your own social media, attending my fundraising events, or just simply being there for me, ready to listen and help when I need you, means more than I could ever put into words. You all contribute to my happiness, and I’m always overwhelmed by and so grateful for the support, love and care that I receive every single day, thank you. 

I hope you all have a happy, healthy 2018, surrounded by those who you love. I’m only ever a message away from any of you who need it.