Duchenne Muscular Dystrophy Awareness Day

Today is Duchenne Muscular Dystrophy Awareness Day. 

[make sure to read to the end of the post to make sure you don’t miss out on the fundraiser!]

About the condition

Duchenne muscular dystrophy (DMD) is a genetic disorder characterized by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact.

Muscle weakness is the principal symptom of DMD, first affecting the muscles close to the core of the body before developing into weakness in the muscles closer to the extremities. 

Later on, the heart and respiratory muscles are affected as well. Progressive weakness and scoliosis result in lowered lung function which can eventually cause acute respiratory failure, and - the heart being a muscle - is also at risk of deterioration and eventually cardiac failure. 

This condition is life-limiting and life shortening, with the current life expectancy being mid-twenties. However, advances in pulmonary and cardiac medicine mean that the life span of many sufferers has been prolonged, with many people living into their 30s and beyond.

How does DMD impact my life?

This condition is still fairly new to me, being the condition that my boyfriend - Sam - suffers from. It isn’t new to him, however. The condition itself is heartbreaking, and thinking about it too much terrifies me, but he reassures me, calms me down when I’m sobbing on the phone, and always somehow makes me smile at the end of the most awful conversations that most people our age don’t even have to think about having. The way that he copes and keeps so positive is admirable, he is lucky to have the most supportive mum who gives him the best care and the best life she possibly can, but even those closest to him can’t begin to understand the physical and mental challenges that he faces on a daily basis. And still, he is the strongest, bravest, most selfless person I have ever met; he would do literally anything for me, cares so much about me & my health more than his own, and couldn’t be a better boyfriend given the the situation we’re both in and the illnesses in the lives we both live. 

Sam’s perspective of life with DMD

'DMD is such a hard condition to live with and I've struggled in the past with accepting the condition and living with it. With the support of family members, friends and health professionals I look at life differently. 

I live everyday to the fullest, I stay positive about everything and if something gets me down I talk about it. By talking to others with DMD I understand that we all go through similar things and that has helped.

Now that Katie is in my life I've become even more positive about things and she supports me so wonderfully. I can't imagine life without her love and support’. 

👇👇👇👇👇👇👇👇

FLASH FUNDRAISER FOR DMD

I am holding a raffle in aid of those who suffer from this condition, with 100% of the funds from the tickets sold going towards Duchenne Muscular Dystrophy. 

Tickets cost £1 and draw will be held when 100 tickets have been sold. 

A countdown to the number of tickets left will be displayed below and updated on both my blog (https://www.braverybottles.blogspot.com) as well as the ‘Bravery Bottles’ Facebook Page (https://m.facebook.com/katiefantblog/). 

The prizes are as follows:

• Netflix subscription gift card
• Kindle subscription gift card
• Spotify subscription gift card

To enter, simply go to www.paypal.me/braverybottles, enter the amount of the cost of ticket(s) you’d like to purchase, and keep checking the amount of tickets left before the randomised draw! 

Thank you to each and every person who contributes!

TICKETS LEFT TO SELL: 0

——————————

And the winners are........

Long overdue update!

Hello again everyone, & sorry it’s been so long since the last update!

First and foremost, here is my (nearly finished), hopefully more permanent ‘blog’, which as you can see is more based towards Bravery Bottles (which incorporates care kits & teddies too). 

Many of you are in the same position as me and are classified as ‘high-risk’ so, in the face of COVID-19, were shielding as I was. I don’t want to moan as I know I’m far from the minority amongst my friends and those reading this, but I struggled mentally a tremendous amount - far more than I imagined I would - and I’m glad that some measures have been lifted and we are on our way back to ‘normal life’ (although not without any interruptions I’m sure!).

Health-wise my body isn’t coping very well - in fact it’s not coping at all! I’m fainting a ridiculous amount of times due to my PoTS and the heat - enough to render me back temporarily permanently bed-bound. I’m tired ALL the time, I’m suffering from vertigo and sickness on top of that and the pain in my bladder, blockages in my catheter, the multiple catheter changes, and the inevitable never ending infection is a whole different story and is affecting my life on a scale so high that (although seemingly drastic), a Urostomy (with or without bladder removal), is the option I’ve opted for next (not that I had any other options to choose from!), and my next hurdle to overcome. If anyone has a Urostomy or anything similar, please message me (if you wouldn’t mind discussing it of course!).

However, on a more positive note, I’ve had a few changes in my life that have improved both my mood and my independence. The week before last, my family managed to arrange a surprise party for my mum which I was able to attend, and the reaction on her face showed the sheer shock and amazement of all of our family being together - myself included. 

The following week I then went back to stay with my mummy last week for a couple of nights ‘respite’ and it was a really nice couple of days and a well needed break for us all; if only a couple of nights. An overdue trip to Bluewater, seeing lots of my family and friends, some much needed time with my mumma, and also having the sense of ‘independence’, knowing that I had planned a couple of nights away with my carers. (Dani & Clara - thank you both for coming!). 

In other news, I have decided to enrol back onto my Law degree this year and try and press on towards graduation. My modules are my choice and so this academic year I am set to be studying ‘Mental Health Law’, Forensic Science in Criminal Trials’, Human rights and English Law’, and ‘The philosophy of Law’. It’ll be nice to have a routine and a focus again. 

I have a few people to thank for their generosity and help over the past few months in terms of the project. Apart from the lovely ‘happy post’ from Megan, Naomi, Phee, Sophie, Lizzie (and anyone else I’ve missed out!), I’d like to especially thank:

• Fernie (& team), who donate 10% of their earnings from their business to a different nominated charity each month. I was shocked honoured to receive £125 from them; thank you to my Auntie Nessa for nominating Bravery Bottles!

• Amanda; the previous winner of the ‘guess the name of the zebra’ prize. A lovely email with photos of the zebra being very well looked after (!) and an unexpected £10 donation really did put a smile on my face. 

• All of the regular stationery & office/admin equipment from Robert Sanderson; my grandad!

• All of the stamps that a few of you have been collecting. If you don’t know about this, EDS UK (the charity) ask for donations of used stamps which can turn into funds for them. You can send them to the address supplied on the ‘contact’ page and I will send them on when I have enough to make it worthwhile!

And yes, to address the elephant in the room, I’d like to introduce you all to my boyfriend; Sam. Unfortunately he doesn’t live especially close to me and he faces his own challenges with his health (which although he takes in his stride, we know will make it difficult for us to see each other regularly). However, he is so caring and supportive towards me, he makes me happier than he even realises! I hope that in the future, he might want to get involved in my blog and maybe my projects too. I have so much more that I could say, but there may be an update sooner than you think, so watch out for that!

Sorry for the overdue post - I have a few things planned so keep checking back and follow the ‘Bravery Bottles’ Facebook page. 

Thank you so much for taking the time to read this post!

Katie xxx

HELLO & WELCOME!

Hello everyone, and welcome to 'Life through my eyes'!💙👀

As well as serving it's main purpose as my Chronic Illness related blog, this project is also home to the self-established project 'Bravery Bottles'🌺.

On this website, you find everything you need to know about the project, as well as information on the ever-building, ever-improving projects: 

'Katie's Care Kits'🎁 and 'Teddies with Trachs'🐻. 

Regardless of whether you’ve clicked on this page intentionally, or you’ve found yourself here after stumbling across the link during a 2am Facebook stalking session, I hope that the website serves the project’s intended purpose: to provide an insight into life with chronic illness, to recognise the difficulties that life brings each day, and to reward that bravery when goals are achieved and expectations exceeded. 

In terms of my blog and in order to help as many people as possible, my personal aim is to take my own advice; step outside of my own comfort zone in order to provide a day-to-day account of the ups, downs, good, bad, honest, vulnerable, and – above all – realistic account into my life personally, as well as speaking on behalf of those living with chronic illness(es) too.

The main focus is on 'Bravery Bottles'; a self-rewarding and achieving project for those who are chronically ill - all the information you need can be accessed here; application forms, fundraisers, events and/or competitions, posts (from either myself, the 'project team', another BB participant, or a member of the public), regular weekly activities, credit & milestone tracking logs, 'Participant of the week', prizes & the shop and more. Occasionally there will be 'special events' to take part in, including - for example - virtual video quiz nights, 'secret stones', 'flash fundraisers' and annual competitions.

I will stand by my promise of being a contact for anyone, anywhere, at any time, whether to help rationalise frantic thoughts, to pass on first-hand experience (as opposed to piecing together very vague and fragmented information from Dr. Google!), to suggest realistic and sensible steps forward, to be an advocate for the chronically ill, or just to be a shoulder to cry on – something that everyone needs from time to time!

Ultimately, my aim will always fall back to making ‘Life through my Eyes’ the blog that wish I found when first falling ill, and for it to provide the information, advice, guidance, and reassurance to those who need it.

So today, if nothing else, make it your good deed to:

1. Subscribe to my blog (ENTER YOUR EMAIL ADDRESS IN THE SIDE BAR)

2. ‘Like’ the project’s public Facebook page (Bravery Bottles), and 

3. Follow the project’s Instagram page (@katiefant_blog).

Thank you to you all for your ongoing support, and remember that you’re never alone (and so never have to suffer alone). 

Any news/updates/announcements will be provided in the side bar. The quickest way to contact me is via email (braverybottles@hotmail.com), but other methods of reaching me are included on the ‘Contact me’ page. 

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.