Writing a book?

I’m debating writing a book about the ups and downs of my life since becoming chronically ill; not just repeating my story but also including information that I chose not to share until now, things I haven’t been physically able to talk about until now, diary entries of days that I don’t remember, letters that I wrote when I was critically ill, unseen photos, posts written by other people (friends, family etc.), plus ways that I manage my illness and my life as it is now.

However, it won’t be easy for me to write, plus it will be very time consuming and something I will put a lot of effort into, so I only want to start the process if it will be something that people would be interested to read  

If you would be interested, could you like this post please?

Thank you in advance to those who respond!

8 years ago

 

Looking back..it’s the 14th October 2012, and it’s a normal, uneventful start to another day at Sixth Form.

I feel very allergy-like today..the pollen count must be high because my throat feels tight and I’ve got a rash all over my body. 

I’m starting to feel really unwell to the point I can’t concentrate. My throat and tongue are swollen and itchy and my breathing really difficult. The room starts spinning and I know I need to get to the medical room, so I ask if my friend can walk me there in case I faint on the way, but luckily it’s not far from the Law class I’m in. 

When I get there, I tell the staff what’s wrong and they phone an ambulance. It’s all a bit of a blur; all I remember is trying to stay awake whilst the words ‘allergies’, ‘anaphylaxis’, ‘adrenaline’, and ‘epipen’ are thrown around the room. My parents arrive in what seems like seconds, but they just keep telling me to stay awake. 

I next remember being in an ambulance with blue lights flashing and sirens blaring. The paramedics kept reassuring me that I’d be okay and - after a few injections - I did start to come around a bit. I later found out that it was adrenaline (Epipens) that they were giving me, along with a concoction of steroids and antihistamines. 

I was so swollen, my tongue didn’t even fit in my mouth so I was looked after in ITU. It seemed like overnight I’d developed hundreds of unexpected, changing, developing allergies - some life threatening - and I had no clue what I was safe with and what would kill me via contact. 

We all thought (and hoped) that it was a one off, but little did I know that this admission would be the first of hundreds. That episode was the start of many that made me a ‘medical mystery’, and that day was the start of the hardest, most emotional, toughest, confusing, frustrating, painful years of my life..

Today is the 14th October 2020 and I’ve spent the day in Portsmouth with Sam for a few hours. 

When I get home, I’ll return to my bed; the place I spend most of my time because I’m unable to rest elsewhere at home. 

My bedroom is prepped with a horizontal hoist which transfers me from my wheelchair to my bed, (and vice versa), which help with the multiple dislocations I have each day (with which a faint or seizure tends to follow!).  

I also have a hospital-style bed which also helps with the positioning of my joints (especially relieving pressure where and when I need to), and prevents pressure and moisture sores on my skin. 

I have 2 wardrobes packed to the very brim with medical equipment, a trolley with emergency equipment, 2 boxes & cupboards with meds, an IV pole for my feeding pump (and any drips I need), a suction machine for critical times in case my tracheostomy blocks, and that’s just a start!

 

For now though, when I’m out, I’m in a wheelchair that’s reclined at just less than 180 degrees (i.e. laid horizontally) to try and stop me fainting or in case of a seizure. My muscles are too weak at the moment even if I could walk, however. 

I’m with my carer who came on shift at 8; crossing over with the carer who worked from 8 last night, to relieve the carer from yesterday, and so on and so forth - my ‘24 hour care’ means there’s never a time when a carer isn’t with me. 

I’m wearing a mask over my nose and mouth (like the rest of the population), but it’s hard to cover my tracheostomy as well without compromising my breathing. I have my face mask exemption to hand though. 

I’m fed straight into my Jejunum - the start of my small intestine (so the ready made feed formula bypasses my paralysed stomach). I have my feed for 20 hours per day and likewise my carers top up 60mls of water every hour to keep me hydration and keep my electrolytes as normal as possible, so my PoTS (faints) is as well as can be. 

A urinary catheter drains my dysfunctional bladder at the moment whilst I wait for a Urostomy and for my bladder to be removed. It’s a big decision to make, an even bigger operation, but overall will hopefully give me a better quality of life. 

 

When it comes to illnesses & injuries, ‘anniversaries’ and memorable dates are a strange thing that everyone deals with differently; some celebrating, and some mourning - in a way - for life beforehand. 

Despite the complete U-turn that my life has taken, I’m so grateful and class myself as one of the ‘lucky ones’. 8 years today I became unwell, and for the past 8 years I have had family stick by my side, fight for my care, co-ordinate my carers, and helped me enjoy life no matter what and have the equipment in place that I need to live a ‘normal’ life. I’m so grateful for all of the support around me; from my family, carers, and friends, medical professionals, online support groups and charities, and also more recently from Sam. If it weren’t for being ill, we never would have met in the first place. 

Don’t get me wrong, it’s been more than tough and there have been times where I honestly didn’t believe I’d cope. There’s been times where I’ve lost all my strength, all of my willpower, and been completely on my knees, but I’ve got through it all so far despite a VERY challenging 8 years, so I know I can cope with the next 80!

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........

To those who recently received GCSE/A Level results..

 If you received GCSE or A level results either this week or last week, then I’m writing this post to you. 

If you achieved or exceeded the grades you were expecting; a massive congratulations to you. There is no better feeling than getting grades you are proud of. 

For those of you who didn’t, I know it feels like it now, but it isn’t the end of the world. I truly believe everything happens for a reason anyway, but regardless, carry on reading..

I LOVED school, for as long as I remember. I have always liked learning. I had shining school reports and could always cope well in an ‘exam setting’. Going back to year 6 - aged 10 - I remember getting the best ‘levels’ possible in the SATs test. I went on to passing the 11+ exam and went to my first choice Grammar School. From there, I went from being top of my primary school...to very mediocre in my secondary school that was full of people that had also been the top of their primary schools for years. But I coped, and I worked hard. 

I was a straight A/A* student at GCSE, getting my target grade or surprised by a grade much higher. I was over the moon, and prepared for my A Levels at the same sixth form. 

Not too relevant yet, but it was then I became unwell. Luckily, I was able to complete those 2 years (albeit by changing sixth forms and doing my exams from my hospital bed). Again, I worked and revised hard, and averages A grades, which was the requirements that my first place Uni asked for to enable me to do a degree in Law. 

I went to Uni, but after 3 attempts and deteriorating health, I had no option but to give up. I was spending more time in hospital than at home, and I was too unwell to study at that point. I’m lucky that the Law School at my chosen Uni have been amazing and have helped me beyond belief; I am still working towards that Law degree from home. My estimated graduation is over double the amount of years the course is to start with. 

You’re probably wondering why I’m telling you about this. It’s for 2 reasons:

1. No one expected this year to be plagued with Covid-19. No one truly knows what grade you would have got if you’d been given the chance to sit your exams. Generally, a fair amount of revision and a good memory would get you through most exams. This is the first time that mock grades have been taken as seriously as they have been by everyone, and the fact that they were sat before schools closed and exams were cancelled is not a true reflection of your ability. If my mock grades were taken, although I would have passed everything, I very much doubt I would have passed them all at grade ‘A’, so don’t think that the list of letters or numbers you’ve received is a reflection of you. Nobody was expecting this year to turn out as it has. It’s been scary for the best of us, but to be in the position of you - those in year 11 & 13, I can’t imagine the anxiety that this unexpected, uncertain and unprecedented times must have caused. The outcome of this year - the grades you were predicted - in no way define you, and I PROMISE it’ll be fine in the end; it’ll all fall into place. 

2. The second (and most important) reason, and the thing I really want to stress, is that studying, exams, and grades are far from the most important thing in life, and I only realised that since I’ve been sick. Without your health, you have nothing. Without family and friends, you have nothing. Without happiness, you have nothing. And none of those things can be achieved with some exam grades. 

I received my GCSE results 8 years ago, and my A level results 6 years ago. What’s happened since?

Recalling the past 6 years, I’ve been completely bed-bound for nearly 3 of them, and bed/reclined wheelchair bound for the rest. I have 24 hour care, 365 days per year. 

Ive been in hospital more than not, have had more operations and procedures than I can count, put the life of some of my family on hold with their focus only being on me, whilst not seeing other members of my family for years. I’ve pushed my parents to their absolute limits in caring for me, both physically and mentally - did their school grades lead to the development of my chronic illnesses? Did they need a qualification to look after me when I was unwell and scared for my life? Without good exam results, would they have not put on the brave face they have for me, and fought continuously for the care I need and deserve? Or would it have got me through times that I was critically ill in ITU, stop the need for the operations I’ve needed left, right and centre. Would it have meant that they wouldn’t have suffered themselves? If they’d have got the best exam results at school, would life be different now?

What I’m trying to say, is that your future isn’t ruined if you didn’t receive the grades you were hoping for. There are always alternatives, but more importantly, there are bigger things to life than grades on a piece of paper. Live for today; nobody knows just what’s round the corner. 

So, congratulations to you all. Be proud of yourself for being you.

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!).