Posts by BB participants - Nicole Gray

'Fight like a warrior' 

I’ve lived with chronic health problems for over 9 years now. I’ve faced a lot of difficult to deal with situations but one of the hardest things that I’ve had to contend with is something that most people wouldn’t even consider to be something associated with chronic illnesses and that is how much I’ve struggled in relation to my self-esteem, confidence and body image. 

As a teenager, I wasn’t the slimmest of girls, I was what most considered to be “chubby” but I think at first it was just “puppy fat” and related to going through puberty and maturing from a girl to a young adult. Chronic illness changed that. I went from what seemed to be weight caused through a “normal part of growing up” to weight gain and retention that was the result of medications and difficulties being active. One of the medications I was placed on a great deal was steroid courses (prednisolone). In short bursts they don’t carry many side effects and are fantastic drugs but when you start to be placed on them longer term you can run into issues. I was on constant high doses due to frequent severe asthma attacks and severe allergic reactions. I was faced with rapid weight gain, fluid retention, excess hair growth, excess sweating, swelling to the back of my neck, horrible stretch marks that covered my body and I’ve not even began to touch on the mental health side effects I face. What I do want to say is that this is my own personal experience with steroids, please don’t be scared of steroid courses as everyone reacts to medications differently, some people have little to no side effects at all. My biggest issue with my weight gain. My weight ballooned to 16 stone (224lbs/102kg) and I felt at the lowest point I’ve ever felt regarding my body image and confidence. People would constantly point out my weight, I faced comments in real life as well as the online world, the place I viewed as my escape from my reality. 

I began to worry about never being able to lose weight and it only getting worse that was until March 2015. In March 2015, I began to be unable to tolerate anything orally (food, fluids and medication). It didn’t matter what type of oral intake I tried or what medication I tried I couldn’t keep anything down. I was hospitalised for over a month as a result of it whilst we tried to get on top of my symptoms. My weight began to drastically drop. In a short space of time I’d gone from 16 stone/224lbs/102kg down to 14 stone/196lbs/89kg. Doctors had become increasingly concerned and as a last resort decided to trial me with an NG feeding tube. It thankfully worked, I managed to tolerate feeds and was sent home shortly after with tube feeds at home. 

Whilst my weight no longer made me feel down I now struggled with feeling extremely self-conscious about having a tube stuck to my face. People would be cruel surrounding it. I struggled with going out in public as I was constantly aware of people’s eyes falling upon my face and seeing my feeding tube and staring at me, sometimes people would go as far as laughing, pointing and speaking nastily to those they were with about me. My confidence plummeted and hit the lowest point it had ever been. This affected me greatly, my mental health began to suffer dramatically and I faced feeling unhappy all of the time. 

By January 2016 I felt I was on a downward spiral. I never felt happy and those around me really noticed. I felt I’d lost so much to my chronic health problems. I used to be someone who tried to see the positives in difficult situations but I just couldn’t seem to find any good. I begged and pleaded for something good, something positive but it just felt like it was never going to come. 

April 2016 a friend on Facebook had posted photos of when she’d competed in a beauty pageant. I felt instantly drawn to the idea. It seemed absolutely crazy as it’s something I’d never considered previously. I’d always assumed that beauty pageants were for girls who were really tall, really pretty and very slim. When I’d thought about beauty pageants I instantly thought about girls strutting their stuff on a stage wearing a skimpy bikini. Without thinking too much I found the UK version of the prestigious international Galaxy pageants. I found their application form, inputted my information as well as sending 4 photos and clicked send. 

Less than 2 weeks later I received an email from them saying I’d been shortlisted for the grand-final. My heart kind of skipped a beat reading the email however I still didn’t think much of it. I never in a million years saw myself as a pageant girl and I thought the directors of the pageant would almost laugh my application off. I put it to the back of my mind and life went on as it had been doing. 

2 weeks later I received an email that has truly changed my life! Reading it I couldn’t quite believe what I was reading, it felt like any minute someone would pinch me and I’d wake up. The email read “Congratulations, you’ve been selected as a finalist for Miss Galaxy Scotland 2017!” I’m not ashamed to admit that I cried reading the email. On telling people they were shocked as I’d not mentioned to anyone I’d applied on the basis that I never in a million years dreamed I’d be selected as a grand-finalist! 

From the get go I got stuck in but I had a great deal to learn! I found out that there was so much more to pageants than the physical onstage round. There was charity work, fundraising, appearances, platforms (a cause or charity you support as a finalist/queen) and much more. I began to have such fun preparing for the final! In a very short space of time I’d gone from feeling at my lowest to feeling happier within myself. As my time as a finalist drew to a close I felt eager to take to the stage and compete for the title of ‘Miss Galaxy Scotland’ but I also felt really sad that my experience was nearly over. 

10^th March 2017 I took the stage, as one of 15 girls aged 19-29 representing Scotland, to compete in the prestigious UK Galaxy pageants. I still had my NG feeding tube and worried about the reactions from other people. Walking on stage I felt a confidence I’d truly never felt before. I felt on such a high, completely on top of the world. The best part of all, I felt beautiful. I found myself feeling very emotional throughout the whole event. I didn’t win the overall title of ‘Miss Galaxy Scotland’ however I was awarded ‘Miss Congeniality’, an award chosen by the other contestants as who they viewed to be the friendliest contestant. It was truly one of the best experiences of my life and I found a new lease for life that I hadn’t had before. I feel I achieved so much during my time as a finalist. I made over 36 appearances (ranging from public appearances, visiting charity projects, supporting awareness days and more, I raised over £500 for 2 different charities (The Anaphylaxis Campaign and The Christie Charity). 

I’m currently a finalist for a second pageant, Face of Scotland, where I compete in May in the senior category (girls aged 19-39). If I win the title I get the chance to go to Disneyland Paris representing Scotland in the final of Face of Europe and the World. As a finalist I’m supporting 2 different charities (Headway Kent and Les Hoey MBE DreamMaker Foundation) and I’ve already made a start on doing different appearances. I also continue to use my pageant platform.

My platform for pageants has become advocating for those who have chronic illnesses and mental health problems, raising awareness of different conditions and also showing other people that no matter what you’re faced with in life, no matter the conditions you may suffer with throughout your lifespan, no matter what medical aids you may have to use in life you’re truly beautiful and nothing should take that away from you. Illness can truly make you feel horrendous, not just physically but mentally too, and it can diminish your self-esteem, like mine did for me, but you are not your illness, you’re much more than a list of symptoms and conditions, you deserve to feel proud of yourself, even if it’s just for getting through the day, you’re doing amazing.

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.

Easter Fundraiser 2018

As you all know by now, I have set up a project - 'Bravery Bottles' (www.braverybottles.com) - 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 (https://www.justgiving.com/crowdfunding/katiefant), 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 www.paypal.me/braverybottles

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!

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The winner of the Easter Raffle was Melanie Venables - congratulations!

              

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.

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! 

https://alleysadventurescomplex.blogspot.co.uk

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 staff..it 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.