17/4/18 - I have finally been admitted to hospital for the long (yet vital) process of starting TPN. The admission starts in my local hospital, and I will then be transferred to Southampton Hospital to complete the training and logistics of life on TPN at home (assuming that's what my medical team decide is the long-term plan.) Applications will re-open after that.

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

Sunday, 22 April 2018


Friday, 20 April 2018

Guest 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

Friday, 13 April 2018

Guest 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.

Friday, 6 April 2018

Guest 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. 

Wednesday, 28 March 2018

Updates, changes, and announcements on my health, blog, and Bravery Bottles!

I've been meaning to write a post for ages now with latest news on my health as well an update on 'Bravery Bottles' - the positivity project for those with any type of chronic illness, of any age, anywhere in the world - which I’m sure you all know of by now. 

When I first set up the Bravery Bottles, I never once imagined it would get the attention and participation it has done. The response I’ve had to the project (in applications mainly, but also in response to fundraising, competitions, the 'participant only' Facebook Group and other social media involvement etc.) has been incredible - albeit a bit overwhelming at times! However, it's reached the stage of having so much content, that its inundating and overpowering the
health side of my personal blog, taking the attention and focus away from it - something I

never meant nor wanted it to do. 

For this reason, there are some changes I plan to make both to my blog and to the project. The main change I intend, is separating the two, making Bravery Bottles a website in it's own right, and that's what I've been spending a lot of my time working away at 'behind the scenes'. The remainder of the changes will be outlined throughout the post and summarised at the end, but in general, the pink section is about my illnesses/blog, the blue therefore being about Bravery Bottles, and those sections will be made into separate posts once the groundwork for both has been established. 

Anyway, this post has been a long time coming; the running and organising of the project, as well as the changes being made, necessary fundraising being done, along with my rapidly deteriorating state of health having delayed it. But here it is...long overdue, but better late than never!

I’ll begin with an update on my health conditions, which
unfortunately means starting on a negative. For those of you who know me, know that I try to keep as upbeat and positive as possible, to not let my conditions limit me from what I want to do, but quite frankly, my health has reached rock-bottom, and I'm putting on a false smile to try and get through the obstacles that my illnesses have put in my way. 

Although hard to admit, my illnesses have worsened and overall wellbeing deteriorated as a

result, meaning that this is the most unwell I've ever been. The conditions from which I suffer are now rendering me bed-bound the majority of the time, and completely wheelchair bound the rest. I'm still completely tube-fed, although any day that a gastro bed becomes available at my local hospital, I will be admitted to switch from J-tube feeds, to TPN (Total Parenteral Nutrition), as I'm finding my current feeding regime quite hard to tolerate. TPN bypasses my digestive system completely, and is administered through the large vein at the top of my heart, accessed via my Port-a-cath (in the short-term, until another Hickman/Groshong line is fitted).

Although EDS is not a 'progressive' disease in the typical 'medical' sense of the word, the pre-existing problems that I already suffer from, which are mostly caused by the secondary 
conditions associated, are worsening each time they are assessed. I have new symptoms cropping up seemingly by the day, I'm becoming more reliant on help for the most simple of tasks, and in terms of the level of medical care I require from my family - who are my carers - has at least tripled in intensity in a matter of months.

In terms of the effects that EDS has on my body, I'd actually say that although being the 'primary' condition, its the one that causes me the least amount of problems. Don't get me wrong, I still have joint pain and dislocations on a daily basis, but with painkillers (in the form of Fentanyl), muscle relaxing techniques, knowledge on the anatomy of joints and how to relocate them, and a high pain threshold (both my own, and the person whose hand I'm squeezing!), it's the part of my illness that I personally feel is the easiest of my conditions. Although not good in the long term, the more a single joint dislocates, the less painful it becomes; my thumbs, in my case, being a prime example as I could move them in and out of socket without even noticing. 

The last update I gave on my joints was on the fusion of my left thumb, which was done under nerve block, fairly simply, with good recovery and a successful outcome. I suffered very little pain with it, and the scar healed well. Based on the 'good' experience I had with my left thumb, the surgeon (with my agreement and consent) decided that although my right thumb had only dislocated a handful of times (no pun intended!), we knew that it was only going to get weaker and looser, so that now was as good a time as any to carry out the same operation on that thumb too. A valuable lesson was learnt that day; do NOT base the expected outcome of surgery on one joint on the series of events that took place during or after surgery on another; regardless of it being the same joint, just on the opposite hand - because my right thumb has been nothing less than a nightmare! 

The operation, like previously, was done under nerve-block, which wasn't as effective as it was before but with pain tolerable (albeit with the help of an extra dose or two of sedatives), the initial operation was done fairly drama-free. However, I knew from the first day that it wasn't right. As the block started to wear off I was in excruciating pain, that lasted for weeks, and even being plastered, it didn't set my thumb in a stable enough position for the bones to fuse together. I therefore had to have the operation 're-done' but on a larger scale with more metal work, and although it has worked this time, my thumb has set at an inconvenient angle, and I still have significant numbness and tingling caused by (what they assume) is damage to the nerves due to the trauma. 

I have a constant, continuous level of joint pain anyway, (the back of my chest/shoulder
areas and hips being particularly painful, especially at night), but this pain is obviously aggravated by trauma.
 I dislocate/sublux almost every joint in my body, some are more painful and dislocate more frequently or to a worse extent than others, but I can usually 
relocate them myself  (or with help when I get stuck in awkward positions - often my hips or knees, and usually in the middle of the night!). I seem to go through 'flares' of the same joint being problematic for a while, and then it settles down again. 

The joint giving me the most problems currently is my jaw which, when dislocated, is the most pain I've ever experienced! If you've been reading my blog for a while, last year I had a full dental clearance (i.e. every tooth removed) due to a serious infection in my gums, which had made its way into the bone and was triggering all of my other conditions to go into 'panic mode', leaving me really poorly. However, for a long time (8/9 months), we couldn't pin-point the origin of this infection, so was on a myriad of wide-spectrum antibiotics. Given alongside this to try and ease some of my symptoms was an IV anti-sickness drug, which, when I eventually was able to stop, became clear that my body had developed a physical dependancy on it. Having seen a specialist and had tests done since that point, it's become clear that in the same way my body needs extra steroids due to being on Prednisolone long-term, my body is also dependant on this other drug; my cells do not function correctly without it.

My teeth went from being almost perfect (no fillings in my adult teeth, never having needed braces, never having a tooth removed), to a mouth full of broken, chipped, crumbling teeth, in a matter of months. When they saw the x-rays which revealed the extent of the damage, the seriousness of infection, and the fact that only a few teeth could be saved, it was obvious that removing them all was the only viable option. 

I did write a blog post on my teeth towards the end of last year, promising to follow it up when I had had my dentures made and fitted. It was a long process of waiting for my gums to heal completely, and to actually get them made and fitted took 5 appointments (each at least 2 weeks apart), but after 6 long months of no teeth whatsoever, I recently got my sparkly new dentures, and I've got to be honest, I love them! However, as my dislocating jaw is a relatively new symptom, I do worry that they are contributing to it in someway - either by overworked muscles or something similar, and, when it does dislocate, it usually locks shut, meaning that trying to remove my dentures, to then relocate my jaw, is a challenge, and an absolutely agonising one at that! However, I have high hopes that over time, my mouth will get used to them and they'll pose no further problems.

The reactions (tongue swellings, rashes/flushing, and abdominal pain) caused by the Mast Cell Disorder haven't improved in over a year now. I have 5 'episodes' per day, every day, each requiring huge amounts of Fentanyl for the pain caused by my bowel. I could never be without my tracheostomy now because of the unpredictability and severity of these swellings. Extra reactions are triggered when I come into contact with one of my many allergies (and these at times require using my Epipen, even despite my tracheostomy), but other triggers include infection, stress, pain, shock, and the symptoms of my other conditions - such as when I suffer a faint, for example).

On the topic of fainting, my PoTS has dramatically worsened. I haven't been able to stand for more than a second or two without fainting, for over a year now, and hence I had to switch from self catheterising to the indwelling catheter I have today, to limit the amount of times I have to get up and therefore faint. My bladder, being a problem on its own anyway, means that I am waiting for a surgically placed catheter too. My faints used to only be caused by standing for too long, but now, I faint when sitting in the car, when I'm out in my wheelchair (my legs horizontal), transferring from my wheelchair to another chair or bed, and even just by sitting too upright when I am in bed. It's become a vicious circle that is proving hard to break. After a faint too, its not just as simple as carrying on - it leaves me confused and disorientated to the point where I don't even know where I am, so cannot be left alone for my own safety. This confusion, it's become clear, is linked to the physical medication dependancy, and an IV dose brings me back round. However, the daily allowance is limited and side effects awful, so all is not as simple nor as clear-cut as the ideal situation would be.

Those of you who live with multiple chronic illnesses and manage many symptoms on a daily basis in the same way as I do will understand the mental impact this has, and naturally, some people cope with it differently to others. At the moment, I am struggling with the feeling of 'guilt' and am constantly apologising for the burden I feel I am on my family; a feeling I really cannot help or seem to shake, regardless of the reassurance that my parents give me that I'm not a burden at all. It's when the physical tiredness starts to show from the same daily tasks that need to be done for me, the physical pain from having to lifting me, holding me when I faint, hoisting the wheelchair into the car, and worst of all when the physical (but completely natural) emotions start to show and I see those closest to me upset about my health, that it really starts to affect me too. I wish I was able to do more for myself, to help out my parents and to regain that independence, and in time I hope I will, but at this moment in time, I'm struggling more than ever, and am just so fortunate to have the help and care I do.

Moving onto an update on 'Bravery Bottles', and I don't even know where to begin. The response to the project has been incredible. It's had more interest, attention, recognition, praise and participation than I ever thought it would. Going from a packed-full life of a 'well person', to deteriorating to the point I'm at today; disabled by physical illness and dependant on others for round the clock care, the project as a whole has acted as the focus, distraction, and motivation I've needed and would be completely lost without.

When I had the idea and was in the early stages of talking about it and debating the idea, considering the logistics of it, actually starting it up and even down to making the application form and launching the project, I didn't in my wildest dreams imagine that the response I'd get from it would even come close the amount of members who are involved in it today. Don't get me wrong, it hasn't all been smooth-sailing. Not a day has passed where hours haven't been spent catching up on the admin side the project, and, with being a not-for-profit project (with the exception of generous donations and dedicated fundraisers - covering on average 15% of the overall cost), it doesn't come cheap either. However, seeing the daily suffering of those who live an already difficult life, made a little bit easier the project, makes every second and every penny spent more than worth it.

More than anything though, I think that for me personally, the feedback outweighs it all. The messages/comments I get, telling me how much Bravery Bottles is helping those who hadn't ever been able to come to terms with their illness before; to overcome obstacles and battles they wouldn't even consider previously, feeling pride in themselves for the things they've achieved that would have before gone unnoticed, seeing the people who also suffer with the same illness as they do, and that realisation that there are people out there who have a mutual understanding of what they're going through - and that understanding being the basis of a blossoming friendship. It's always nice to receive compliments on your hard work, and time and time again, it's the aspect of my own positivity, my own outlook on life, and my own willingness to help others despite the battle and strain on my own health, that really motivates me to want to take the project a step further each time.

The official launch of the project was the 1st January this year (although there were some sign-ups before which were a 'test' on how the project would work, run, benefit others etc.) and since then, we are just short of 200 members. To you, that might not sound a lot, but to me, that's 200 chronically ill people whose illness affects their every part of every day, in a way that the majority of the time wouldn't even be thought of as difficult in any way by the general public. I wanted to give some examples of real acts that some of the participants of the project have considered as an act of bravery. You may not consider some or any of these acts as 'brave', or you may consider some or all of them to require a level of bravery that you'd never believe in yourself to have, but that's the whole point of the project - that the opinions of others are irrelevant - if it's brave for the PARTICIPANT, then it deserves to be recognised and rewarded as such; so the 'bravery' aspect of the acts below is not up for discussion on this post.

Some example 'acts of bravery' from the project are:
  • Attending medical appointments alone
  • Refraining from self harm
  • Travelling to and from school (either for yourself or for another family member)
  • Talking to 1 person per day
  • Reaching your goal weight (either by putting weight on or losing weight)
  • Administering your own injection for the first time
  • Admitting to needing mental support and visiting a counsellor
  • Learning to walk again in the space of just 6 months, after being completely wheelchair bound for 3 years
- In terms of the self-awarded beads, in the short space of time since the project began, there have been 6 people who have carried out 30 acts of bravery, and have therefore reached the first milestone. - On top of that, numerous members have earned themselves 'bonus charms'. To be precise, there have been:
            27 'Extraordinary Acts of Bravery' and
            16 'Asset to the project' charms awarded.
           46 Members have signed up because of a 'friend's recommendation'.
            10 'Guest posts' have been written by Bravery Bottle Participants (a fairly new blog
                     addition which I intend to continue), and finally
            21 'Bravery Cards' have been issued to those going through a long-term, slow
                     progressing treatments/programmes/rehabilitation.

That's not including the 3 monthly draws that have taken place so far - on the 1st day of each month - where all participants are put into a random generator; the winner choosing a gift card of their choice as their prize, and the 38 birthday cards and charms sent out to all members of the project whose birthday this year falls after the time that they apply.

The final subject to mention in terms of Bravery Bottles, are the competitions and fundraisers that have been held. 

When it comes to fundraising, there have been events held by myself in person (Christmas Fundraiser, and Doughnut Sale - thank you to mum & everyone at Blackfen School who supported me through those events), the outcome was unbelievable - the doughnut sale in particular raised a huge portion of the money needed to keep Bravery Bottles running.

I have also held a couple of virtual events too - selling 'Wish Bracelets', and holding an Easter Raffle*. There was also a 'Guess the name of the Bear' online fundraiser held by Megan - a participant and valued member of the project - where 100% of the proceeds were given to the project, which was so generous and I'm so grateful for. The winner (the person who 'bought' the correct name of the bear) won the teddy and the wheelchair too!

*The Easter raffle is still ongoing, with tickets available to buy here at a cost of £2 each, and will be drawn on Easter Sunday, the 1st April. The winner will be drawn and video uploaded onto the Bravery Bottles Facebook page, but will be contacted privately too - so don't worry if you miss it. 

The prize is an Easter Hamper which contains everything from a 'Build a Bear' Rabbit in a carrot outfit, to easter crafts, a watering can and seeds to grow your own easter vegetables, jewellery, small toys and teddies, and LOTS of chocolate; so buy your tickets now before you forget! 

At present, there has been one official competition held - the 'Design a bag' competition.  It's pretty self explanatory, but participants had the opportunity to create a design completely of their choice (the only requirement being that their design contained the project's logo and url)that was to be printed onto a bag, and sold/voted on to determine the winner; so was in the designer's best interest to make it as appealing to as many people as possible rather than limiting it to a certain purpose or group of people.

The competition was split into 3 rounds and everyone who submitted a design, regardless of where they finished, got a complimentary copy of their bag as a token prize for taking part. Those who made it to the 2nd round - meaning they were in the top 8 after the first 'selling of the bags', also won their design in a frame, a certificate and a bonus charm, a BB bead pot, a large suction hook, and a BB keyring, and those who made it to the final (top 4), as well as a certificate and bonus charm, personalised keyring, and an ornamental 'especially for you' heart, won a 'star prize' (one of which is still to be received so I can't put in this post yet! The star prizes included:

- Makeover and Photoshoot (with complimentary photo) 
- English Heritage annual membership 
- A night in a hotel and the following day spent at Crufts - the famous annual Dog Show. 

All of the events and competitions listed above, combined with the very generous donations from family, friends and strangers alike, a total of £930 has been raised so far, just in the name of Bravery Bottles - an incredible result. All of this money is re-invested into the project: to cover the cost of stock (including the initial BB kit, follow-up bonus charms), the postage (a massively expensive portion of the project's budget that I didn't anticipate before the launch!), as well as the expense of prizes for competitions, draws and suchlike.

Despite the compliments I get from others on how much of an impact it's had on their lives, Bravery Bottles has changed MY life too. It's acted as a distraction, given me something to focus on on days that I'm not well enough to get out of bed, and from it I've made so many 
new friends. The positives of having a project that includes people from all over the world means that due to the different time zones, there is always someone online, and hence always someone to talk to. Bravery Bottles has developed into a community full of the most admirable, understanding people, and I couldn't be any more proud of that.

In terms of the changes that I plan to make, aside from separating my blog from Bravery Bottles, is to dedicate more time and attention to my blog, so people can see what life is really like living with multiple chronic illnesses. I've decided that I'm going to use the blog 'mascot' (a bear called Katie, who I'm sure you've seen before in posts and in photos at fundraising events) to do 'life through my eyes' (ironically the original name of my blog) type updates. I adapted the bear myself, to match all the medical appliances I have - tracheostomy, portacath, feeding tube, and catheter, and for a long time have been collecting short videos of the 'medical parts' of my life. Now, I have decided that my blog is going to become a 'journal' of 'life through my eyes', meaning that I won't keep my old posts, but instead will be redesigning a new blog completely.

I have already closed Bravery Bottle applications temporarily to catch up with the backlog (which I will have done in the next few days). There is a reason for this; the past few months have been a 'trial and error' type period for Bravery Bottles. I'd never done anything like it before so was learning as I went along too. I have trialled different materials, stockists, packaging, postal companies, contents of the Bravery Kits, charms and bracelets, and the project's design too. I have now chosen the best way of running this project, keeping the cost as low as possible without compromising the quality of the products, the design and contents of the BB kits, how they are packaged and sent, but most importantly, I have changed to a more consistent and reliable stockist to provide the charms; meaning that the charms that are awarded for the bonus acts will always be the same, and are more relevant and representative of what the charm is being awarded for. 

The application form will be adapted slightly, for the applicant to choose EITHER a bracelet OR a keyring for their charms (meaning less stock is wasted because its not being used). As all the bracelets and charms will be coming from the same place, there won't be a variety of colours and styles to choose from, making it a lot easier for me when making up the kits. 

I am going to create a 'waiting list', for the times when there are people who want to join the project but I already have a list of applicants to make and send kits to. In the past, I have just let the application form grow longer and longer, and the only requirement to join the Facebook Group was that you had filled out the application form. By doing it this way, it means that I won't have as much pressure to make and sent the kits out, but also that only those who have already received kits and so have started their involvement in the project is part of the group.

Other than that, the other changes I have planned that I can remember off of the top of my head include the Bottle decoration; until about applicant 130 or so, all applicants were female. I since have had quite a few male and non-binary members sign up, so have decided to keep everything gender neutral. I will also be opening a new 'shop' with new products, including the finalists' bags from the recent competition, and in terms of the charms, I intend for there to be an option on the website to apply for/nominate others for bonus charms that way, either anonymously or leaving your name with an optional message if nominating someone else.  

Currently, both '' and '' lead you to the same, central blog page that I have running. This is because there were people who followed my blog previously to starting Bravery Bottles, and when I did set it up, my name wasn't very memorable for people to pass on to potential new members. I think that I will leave it the way it is, the central page being a 'click here for blog' and 'click here for Bravery Bottles' type set up, those then obviously redirecting you to the relevant pages. 

There will of course be additions and changes to be made to both the BB website and my blog - the logo and design included - and whilst all this is going on, it will mean that there will be times that this page is unavailable. You are all always welcome to contact me via email at any time though, even if my page is under maintenance. I am also of course on Facebook via the Bravery Bottles page, and on Instagram too (@katiefant_blog), so if you have any questions or queries, don't hesitate to contact me!

Finally, I'd just like to say thank you. Thank you to all of you who have supported and continue to support me in any way; to my family and friends who support me regardless of what crazy idea I come up with next! Thank you for all the lovely comments I'm left; theres no better feeling than reading them on my blog and other social media - they truly are a lift when I need it most. Thank you to all of you who have so kindly donated to Bravery Bottles, whether in person, to the PayPal page, at a fundraising event, by entering the online fundraisers or by purchasing the items I'm making to raise money for the project. And finally, thank you to everyone else for being there for me no matter what.

An extra special thank you to everyone who is a member of 'Bravery Bottles', whether you were one of the first or one of the last to join the project, I want to thank you every single on of you for your participation, and for joining in with the events, competitions and draws that I organise. It's so kind of you all that leave me such thoughtful and meaningful comments and messages, and some of you even go above that to send me letters, cards, and gifts through the post - it all means so much to me. Each of you deal with the difficulties and obstacles that life throws at you in such an admirable way, and you should all be proud of yourselves. Always remember: 

"You can't always be strong, but you can always be brave"