Posts by B.B. participants: Naomi Gilchrist

Set up by Katie Fant the 'Bravery Bottles' project is a new project for anyone with a chronic illness, regardless of whether its physical or emotional everyone is welcome to join. Bravery Bottles aims to highlight acts of bravery, such as a hospital stay, going to a therapy session, having a test/scan etc. It’s whatever you personally consider an ‘act of bravery’. Through the project our acts of bravery are recognised, rewarded and our fight made seen. Katie sees that ”anyone living with a chronic illness is brave”.

"How does ‘Bravery Bottles’ differ from other similar projects?

Put simply, the difference between my project and other similar well-known projects is based on the definition of ‘bravery’ within the chronically ill community, in particular who and what is considered as ‘brave’. The majority of other similar projects are aimed at those with an illness that, at times, means lengthy hospital admissions, the need to be blue-lighted to Resus in ambulances, require multiple ITU stays, need regular surgery etc. as their lives are at risk. Having to face ‘acute emergency’ type scenarios like this is, of course, very scary and no doubt deserves recognition and reward - and this project does just that. As well though, it extends to include the people who still have to face, manage and cope with a chronic illness as part of their daily life, but who don’t necessarily have the ‘acute emergencies’ as mentioned previously as part of their illness. Those who have a ‘stable’ illness, or one that doesn’t require emergency hospital admissions, either because of the nature of their illness, or because they have community care implemented to allow them to be cared for at home when they’re more unwell than usual, are often not considered ‘ill enough’ to take part in these sort of similar projects. Not only is this unfair to the patient, but it also encourages competition within the medical community as to who is the ‘most ill’." - www.braverybotles.com

Being part of the project and seeing my little glass bottle filled up bead-by-bead has greatly helped me recognise the resilience I have within myself to just keep going an fight whatever battles come my way and it's a visual reminder of how strong I am and how I got through some really difficult things or the everyday things that I have to endure like blood tests, seizures, dislocations etc.

I have given myself a bravery bead for acts such as:

• Going to an appointment
• Having my spinal injections
• Getting through a bad pain or fatigue day
• Getting though a bad day with my emotions
• Seizures
• Hospital admissions
• 999 call outs
• Having a bad dislocation
• Fighting anxiety
• Having a blood test
• Getting through a bad insomnia night
• Bad symptom day

How to project works:

Each person is given a 'Bravery Bottles kit' which include a tracking booklet, 30 bead and a glass jar charm and a charm bracelet. For each day of bravery a bead is added to the jar. Once your jar is filled with the 30 beads a milestone charm is awarded. There are also extra charms, such as introducing a friend to the project or when its your birthday.

It's a way of recognising and awarding ourself for the 'acts of bravery' we face as a life lived with a chronic illness. As well as this there is access to the participants Facebook group, monthly prize draws and other competitions that you can be a part of.

Posts by B.B. participants: Megan Whitehouse

Obsessive Compulsive Disorder- OCD. Three little words that seem to rule my life with overwhelming power. OCD has been a part of my life for as long as I can remember. For so long I thought it was 'normal' for your brain to be constantly full of a never ending stream of thoughts and worries. 

OCD is an anxiety related condition where a person experiences frequent intrusive obsessional thoughts which are often followed by repetitive compulsions or impulses.

An obsession is an unwanted and unpleasant thought, image or urge that repeatedly enters your mind, causing feelings of anxiety, disgust or unease. A compulsion is a repetitive behaviour, action or mental act that you feel you need to carry out in an attempt to relieve the unpleasant feelings brought on by the obsessive thought.

OCD affects as many as 12 in every 1000 people (1.2% of the population). 50% of cases fall into the severe category, with less than a quarter being classed as mild cases. The symptoms of OCD can significantly interfere with the ability to function on a day-to-day basis as they are incredibly difficult to ignore. 

Every person with OCD is affected differently and has different symptoms, so each person has a different story to tell. Here is how OCD affects me.

I have a range of complusions caused by OCD (some more distressing than others) and they all impact my daily life in their own way.

• Counting up to ten in multiples of two repeatedly in my head. 

• Dermatillomania (Skin picking).

• Everything Organised in Alphabetical Order (Apps, Bookmarks, Lists etc.)

• If I forget to check the time on my phone before I lock it I have to unlock it then lock it again 3 times (just to make sure I've read the time correctly).

• If someone 'tempts fate' I have to 'touch wood' (I can't relax until I do and if I don't it feels like something bad is going to happen).

• Need for constant reassurance (I'm continuously asking for reassurance on the same topic for a sense of 'relief').

• Obsession with even numbers and multiples of five.

• Push the toilet handle three times.

• Rearranging everything in the room if something doesn't 'look right' or isn't in the 'right place' (it makes me very stressed and upset when objects aren’t arranged 'properly').

• Repeating actions three times (counting as I do so).

• Repeating random words and phrases over and over again in my head.

•Rereading a sentence I misread or don't understand three times (it takes me a long time to read something).

My OCD is currently unmanaged so my head is filled with intrusive thoughts for most of the day and my complusions take up an awful lot of my time. It's only when I have an 'OCD Moment' (when my complusions become visible to those around me) that people notice that I'm struggling. 

That's one of the problems with OCD; it's an invisible illness. So much is going on inside of your head all the time but your friends and family around you have no way of knowing because from the outside you look fine. It isn't until the obsessions become too much and spill out that people can see what's going on inside your head all the time.

You know that the complusions you do make no sense and that the 'reasoning' behind them is completely illogical but that doesn't make the fear or the anxiety any less real! The OCD part of your mind is just spiralling out of control and you feel completely incapable of stopping it. The intrusive thoughts of OCD feel like they're controlling your life and cause an awful lot of distress!

If you'd like to know what its like inside my mind watch this video. https://themighty.com/video/i-have-ocd-this-is-what-its-like-to-be-in-my-mind-for-3-minutes/  The constant counting and never ending stream of thoughts is just like what I experience. (The only difference is I count different numbers and have different thoughts/worries).

GUEST FUNDRAISING : Megan Whitehouse - Secret Message Capsule Keyrings

This is another fundraiser from Megan; a valued member of the team.  

The official ‘fundraiser’ has now finished but keyrings are still available for purchase in the ‘shop’. 

PUBLIC FUNDRAISING CHALLENGE

SMARTIES TUBE CHALLENGE - Ends August 31st

Ths first of the public fundraisers is the ‘Smarties Tube Challenge’. This is a well-known project, but for those who haven’t heard of it, all you have to do is buy a hexagonal tube of Smarties - the hexagonal tube is essential, being the focus of the competition. Once you’ve eaten (and hopefully enjoyed!) the chocolate, all that’s left to do is fill the tube to the top with 20ps. A single tube holds £12, so if only 5 people took part, £60 would be raised, which is just incredible! So please get involved so we can raise as much as possible (don’t forget to tell your family and friends about it and get them involved too!).

Posts by B.B. participants: Megan Whitehouse

As this month (May) is EDS awareness month I thought I'd put together a post explaining what EDS is and how it affects its sufferers. 

As an EDS warrior myself this is a very important month for me as raising awareness is so important as this condition is rare and is often missed by doctors so patients often go undiagnosed for many years! 

EDS (Ehlers Danlos Syndrome) is a rare connective tissue disorder that causes the body to produce faulty collagen. Collagen is the 'glue' that holds our body together and is found all throughout our body. In our ligaments, muscles, joints, organs, eyes... This faulty collagen weakens the tissue that supports the skin, bones, blood vessels, arteries, internal organs and more. 

There are 6 'main' types of EDS (these are the most common types). These are; Hypermobile Type, Classical Type, Vascular Type, Kyphoscoliosis Type, Arthrochalasia Type and Dermatosparaxis Type. Though I've only listed the names of 6 types of EDS there's actually 12 known types of EDS that have been discovered (so far) though the other 6 are extremely rare. 

Symptoms vary depending on which type of EDS you have and no two people have exactly the same symptoms but the most common symptoms are; Hypermobile joints, soft velvety skin, easy bruising, poor wound healing, abnormal scarring, joint dislocations/subluxations, chronic pain, stretchy skin and many more.

Common comoribities are; Chiari Malformation, TMJ, POTS, Dysautonomia and CCI. 

Posts by B.B. participants - Nicole Gray

I feel extremely proud of myself for what I've managed to achieve thus far. My education is something I feel extremely passionate about. Circumstances have lead to me facing a great deal of adversity where my education has been concerned. If you'd have asked 13 year old me what my future plans were I'd have replied: staying on at school until I was 18, applying to University, gaining good results in my examinations and finishing University by the age of 22. Unfortunately my life didn't quite go according to plan and I was thrown into a life living with various chronic health problems from the age of 14/15. My once very good school attendance dropped dramatically, so much so that my final few years of school I can probably count on one hand the number of times I managed to attend a full week of school. I faced some very negative comments from other people where they expressed their opinion regarding what they believed I should do in terms of my education. University was my biggest ambition in life however instead of supporting me (which very few people in my life did) I faced comments such as "you'll never get to University so why bother?" "just give up now", I was even removed off my higher English course as my school didn't believe I would achieve a pass in it (thanks to my amazing parents writing a letter to my school I was allowed back on my course). It didn't matter what people believed, I was out to show that I was capable of achieving great things. \

I should have finished school at 18 however on evaluating things I made the smart decision of asking if I could repeat my final year of school as I felt I wasn't in a position to pass my exams due to my poor school attendance, thankfully my school allowed me to do this. After finishing my final year of school during what should have been my summer holidays, I attended a 7 week long summer school set at 1st year University level (I actually only managed to attend 5 and a half of those weeks due to spending time in intensive care, I even had to sit one of my subject's exams at home). My University condition, to study a BA (Hons) in Psychology, was achieving BBBB (I had to have a B in English) in the 4 Scottish Higher examinations (English, German, Maths and Modern Studies) I sat in my final year of school, on getting my results back in August 2013 I had achieved BCC (B in German, C in English, C in Modern Studies and I failed Maths), however on accounts of how well I did at summer school (I got AAB in the 3 subjects I studied) as well as having several different extenuating circumstances I was accepted to study BA (Hons) in Psychology. I will forever be so proud of myself for what I managed to achieve, I will forever remember the moment I found out I'd been accepted to University, I've never been more proud of myself as I was on finding out I had did it. 

Throughout my time studying full-time I faced a great deal of issues related, once again, to my attendance as a result of my health issues. I very much struggled to attend classes. Unfortunately due to this, and due to so many hospitalisations, I could not sit my final examinations which were required for me to pass my 1st year so I was now allowed to progress on to 2nd year. I applied to repeat my 1st year in the hopes of passing the year 2nd time round, this repeat year was granted. I also applied for a place in student accommodation for this repeat year and was granted a place. It was fantastic experiencing my first real independence, I throughly enjoyed the different experiences this independent living gave me and have fantastic memories of my time in student accommodation. Throughout this repeat year, unfortunately, things in relation to my health worsened to the extent during my 2nd Trimester I was unable to attend the majority of my classes (I think I managed a total of 5 classes that Trimester), again I missed most of my examinations and, again, was not allowed to progress onto 2nd year. There were many tears in response to this however after much deliberation I made the heartbreaking decision to withdraw from my Psychology course on medical grounds. I felt completely hopeless, my health had already taken so much from me but it was heart-wrenching feeling like I had to give up something I'd worked so hard on. However, my story was not completely negative and in time I found that despite my initial thoughts being that there was no possibility of "every cloud having a silver-lining" in relation to losing my University place, I found my rainbow after the storm. 

I decided one day, out of the blue, to look into and enquire about 'The Open University'. They provide flexible part-time distance learning with a wide range of different courses. I jumped at the chance of enrolling on one of their courses and registered for their BSc in Health Sciences, I've truly never looked back since. This is my 3rd year with them and I will soon be completing my 2nd module (I'll have a 1/3rd of a degree!). Yesterday I received the result of my 4th assessment where I gained 90%! I feel so proud of myself for everything I've managed to achieve in spite of the health adversity I continue to face. I am doing this for me. I am doing this to show myself that I am capable of achieving fantastic things and that not giving up can truly give you great things. My degree is part-time so I won't achieve my full degree until 2022/23 however I am more determined than ever to do this. I am more than a list of symptoms and a series of conditions. I can do this!

Posts by B.B. Participants - Terri Hester

To the specialist who suggested I take out my mirena coil and try for a baby to see how my symptoms are after birth.To a society who thinks it’s acceptable to expect every woman to want to have a baby.

Stop… Please… Before you do more harm than good. I am 30 years old, I don’t have children, I do however have 6 beautiful fur babies who I love as if they were my kids. I have several illnesses one is a lesser known invisible illness called adenomyosis, even most doctors and nurses have never heard of this condition and yet being on a number of support groups I have found its not as rare as you would think.

Let me tell you a bit about adeno… Instead of the endometrial lining growing where it should mine grows inside the muscle wall of my uterus and because it is inside the muscle it cannot shed, instead every month it continues to build up causing an oversized and boggy uterus. Symptoms include irregular and heavy periods, 24/7 pain in the abdomen, around to the lower back and down the legs, insomnia, exhaustion, depression, brain fog just to name a few (trust me the list goes on for several pages).

Looking back now I realise I have had this disease since I hit puberty however because periods seem to be such a disgusting and embarrassing thing to talk about I thought what I was experiencing was normal, I didn’t know any better. I have never had regular periods and when I have had them I bled so heavily that I found it soaked through my clothes on a regular basis and I had no control over it, not to mention the cramps, my god the cramps…

I turned 21 and was put on the progesterone only pill, for two and a half years I was in heaven, not a period in sight, no more pain, no more ruined clothes. Then one day I had a random period arrive I anxiously awaited the next month to see if aunt flo would arrive again, she didn’t come, I put it down to stress. A couple of months later it came back aunt flo decided she wanted to visit me every month again, I was none too happy to make her acquaintance let me tell you.

Eventually I got used to it again, same old story, no different to when I was a teenager. Soon things began to change. 3 years ago I moved in with my boyfriend, as far as we were concerned we were both healthy adults and in a happy relationship I was 27 at this point. One month I had a period that lasted three weeks finally I came off, again I just put this down to stress. One week later I was back on again this was THE most painful period I had ever experienced and lasted for another 10 days. I remember being in so much pain I was curled in the featal position on the sofa sobbing, enough was enough I finally realised something must be wrong, this can’t be normal I made the decision to go see my gp.

I won’t go into the ins and outs of my 2 year journey to a diagnosis because we will be here forever, what I will say is for a long time I was fobbed off “there’s nothing wrong with you” “you’re normal” “it must be your genetics” I stood my ground and requested tests, I had several blood tests that all came back normal, I had an ultrasound which again came back normal, let me tell you if all the usual tests come back normal doctors will not then think ok well we’ll try looking for something unusual… Oh no…. “Its all in your head”.

I never gave up, I knew there was something wrong as eventually the pain became worse and became constant. One day I went to the doctors crippled in pain, tears building up in the corner of my eyes, he takes one look at me “you look like you’re in pain…would you like me to refer you to a specialist?” It was like I was hearing a heavenly choir, oh my God he was finally taking me seriously, it had only taken 6 months to get to this point.

Finally I managed to get my appointment with the gynaecologist and he was amazing within 5 minutes he said the word endometriosis, but it couldn’t be diagnosed with out a laparoscopy. I went away thinking finally I know what’s wrong and it made sense. The day of the lap afterwards he came to visit me in my bed, “sorry we couldn’t find any sign of endo but I believe it may be a similar condition called adenomyosis we went ahead with giving you the mirena coil because it will alleviate some of the symptoms just like it would have if you had endo, if it works you have adeno, if not we will have to refer you to a bowel specialist” ( the gynaecologist’s go to move because they don’t know what’s wrong with you)

4 months later follow up appointment, mirena worked for one month and then symptoms came back. “Ok we’re going to try this next treatment for 6 months called zoladex. If this works you have adeno, if not I will have to send you to a bowel specialist”(see he did it again)

Zoladex, let me tell you is horrible. A flippin implant being injected into your stomach every 4 weeks to induce menopause at the age of 28 and 29, just wow, a whirlwind of needles, hormones, tears, hot flushes, night sweats and if one more person said to me “you’re not old enough to go through that yet” I swear I was going to go down for murder. Miracle of miracles though, no more pain, what a blessing.

I am now at the point where I have my diagnosis of adenomyosis, I have been on zoladex, injections for 15 months, I had to be taken off them in march of this year as they were causing additional issues, I now have painful joints that crack constantly and my wrists will never be the same again.

Now for the good news, there is actually a cure – unfortunately it’s a hysterectomy.

NO consultant will agree this surgery at my age with no children unless it is life threatening.

I had hoped a second opinion would get me closer to the surgery I long for. So I went along today and this appointment is what prompted this oh so long rant. The whole time I sat there I was made to feel like the only reason I existed on this earth was to have a baby and that by wanting the surgery I was committing some sort of crime against humanity. “I promise you, you’ll regret it” “you may not want kids now but you’ll change your mind’ “I can’t fathom why a young lady with no children would want this surgery” she even turned round to me near the end of the appointment and said to me “why don’t you have the coil taken out, try for a baby and see how your symptoms are after birth?”

I saw red and left the hospital in floods of tears.

For crying out loud how many times? I don’t want a baby and will not be blackmailed into trying to have one, this disease renders a lot of women infertile or if they can conceive struggle to carry to full term. She could be sentancing me to a long struggle, to numerous miscarriages, not only that but the mirena is currently the only thing i have keeping (at least some of) my symptoms at bay I will not have it taken out.

Who does she think she is? But then I got to thinking why does society feel like they have the right to try making a woman feel like she MUST have babies? Why is it socially acceptable to ask when a woman is going to have a baby or why she hasn’t had one yet? So many women these days can’t have kids or even don’t want kids, don’t make it any harder for them. I can say from the bottom of my heart it is hard. I want to run away and cry every time I think of it, I have dreams of being pregnant and when I wake up and realise i’m not it hurts. Not because I want children, I don’t, its because society has ingrained into me that that is what a woman is for.

My battle to have my cure is ongoing and I will not stop until I finally have my hysterectomy, in the meantime I want to raise awareness, I want society to be a bit more considerate of a woman’s feelings. Also I want the stigma around puberty and periods to stop, if I can help one young girl learn that what she is experiencing isn’t normal then I will have done my job.

Terri runs her own blog, which you can visit by clicking here. 

Posts by BB participants - Laura Bennett

Pets and chronic illness 

iiI want to take a moment to talk about pets and chronic illness. So many people with chronic illnesses of many kinds have pets. Pets can be a god send in terms of chronic illness for so many reasons such as:

- Feeling less alone, we all know that people with chronic illness can find things alot more challenging than the average person.This can mean people can go days weeks or even longer without leaving the house or only leaving to go to appts. This can be incredibly isolating, having a pet can give you that connection that sense of having something someone there. They may not be able to talk back to you , they may not be able to have a conversation but they are there and they help you to just be

- Having someone depending on you and someone you need to care for This is especially helpful when you have mental illness or difficulties surrounding ,mood. I know for me my pets have saved my life of on so many occasions, Knowing they depend on me they need me that i can't go anywhere as they wont be cared for is often the difference between walking the tightrope and falling off

- Connection to others- the internet is a wonderful thing and having pets and being in groups for other pet owners can often help you connect with other pet owners all over the world

- A reason to get up in the morning. - pets need care be it only a little or more needy pets that require a lot more sometimes the only thing you can do is care for them, and thats ok , having them there can be a reason you get out of bed even if its not often , i know for me i find that sometimes the only thing i do is feed millie and molly and go back to bed but i did something that day and i still got out of bed

- Calming and relaxing, we all know that cat purrs for example are known to be calming , but all pets can and usually are helpful to their owner to calm and relax in my case i often sit with millie and molly during a panic attack. Despite the fact that they hate being held being near them is enough often to calm me down and help me.

Posts by B.B. Participants - Megan Whitehouse

"The Stress and Anxiety that comes with gastro issues"

I've been suffering from gastro issues for over a year now. It started with acid reflux (troublesome but bearable). Then came the difficultly to swallow. Food would get stuck in my throat whenever I tried to eat, water wouldn't clear it and it would cause a lot of pain until eventually the food slowly went down. The same started to happen with liquids then even my own saliva! Before I knew it I couldn't eat or drink anything without it getting stuck or 'choking' on it. I had to adapt to drinking every drink through a straw with tiny sips at a time.

As soon as this started I went to my GP, concerned knowing something wasn't right but she wouldn't refer me to see anyone as I wasn't loosing any weight. It wasn't until 4 months later when I began rapidly loosing weight that she referred me to a Dietician and a Gastroenterologist.

I saw the Dietician pretty quickly (probably about two weeks later) who decided to prescribe me nutritional supplement shakes. They tasted nice but they didn't help as I was still loosing weight so they introduced an extra supplement- which unfortunately still didn't work and I continued to loose weight.

I finally saw the Gastroenterologist about 3 months after my referral who decided to run several tests including a barium swallow, endoscopy, gastric emptying study, 24 hour PH monitoring study and more but all have come back negative apart from showing acid reflux (which we already knew). 

Over the months that it's taken to complete these tests and recieve the results my initial symptoms have worsened and I've developed more symptoms but we're still no closer to finding out exactly what is wrong. I'm still loosing weight so I'm significantly under weight now. 

All of this has had a profound affect on my mental health in ways I'd never imagined. I constantly feel stressed and my anxiety is worse than it's ever been. Food and nutrition is constantly on my mind, forever planning the next "meal" and calorie counting to see if I'm meeting my Dietician's target (which I rarely can). This never ending "noise" inside of your head is exhausting and certainly starts to wear you after a while.

However I've found comfort in those who are going through similar situations, people who understand, people I can talk to about the seemly never ending grind. They give me hope for a better future. Having Bravery Bottles in my life has also helped me cope, giving me a way to reward myself and acknowledge my achievements and victories over those small battles which otherwise would go unnoticed. 

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