18/3/18 - I am currently selling raffle tickets for the Easter Fundraiser' (information on how to purchase tickets can be found here).
17/3/18 - ALL APPLICATIONS CLOSED UNTIL FURTHER NOTICE. DETAILS TO FOLLOW.
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 firstname.lastname@example.org.
Hello everyone and thank you for visiting my blog!
It’s fair to say that my life hasnt taken the route I originally planned it to; the life I had planned for as long as I can remember. Growing up, I knew that above all, my studies and career would play an important part in my life, having always loved school and sixth form. University was sort of a given from my first day at secondary school and something I worked so hard for, and was my motivation to do well - especially when it came to visiting universities; I fell in love with my chosen University, and I came away with even more drive than before to earn my place there, and was determined to achieve my goal.
Just a month into sixth form though was when I fell ill with the initial ‘Anaphylactic reaction’ (severe allergic reaction). I couldn’t confidently pin-point what had caused it, so armed with a newly prescribed Epipen, dismissed it as a ‘one off’, returned to normal after a few days recovery, and, keen to get back to my studies, returned to school. Little did I kniow then, that first ‘anaphylactic reaction’, wasn’t Anaphylaxis at alll, but a Mast Cell Disorder, a pre-cursor, and primarily the initial symptoms of Ehlers-Danlos Syndrome, a condition I wouldnt be diagnosed with until 4 years later. Both of these conditions, along with PoTS, Intestinal Dysmotility and Interstitial Cystitis, combined, make up a whole host of symptoms that I battle every day.
Severe tongue and throat swellings, complex stomach and bowel issues including severe pain and malabsorption, fatigue, bladder failure, dislocations and subluxations, faints and confusion, are just some of the symptoms that I experience daily. A result of these conditions, combined with side effects from the medication needed to control them, means I suffer further issues such as anaemia, infections due to a suppressed immune system, Osteoporosis from being on long-term steroids, physical medication dependancies, and much more.
Although I do experience better and worse phases, I am typically bed-bound but use a wheelchair to get out when I’m well enough. I rely heavily on my parents as I need 24 hour care, including medication administered up to 10 times per day, both via feeding tube and intravenously. Because of my complex health conditions, I also have a few 'added extras':- - Firstly, I have a tracheostomy - a tube that goes through my neck and into my trachea (windpipe), and serves as a secure, permanent airway in case my own fails during a swelling. - I always have some kind of intravenous line/lines (such as a portacath, Hickman/Groshong line, PICC or midline) of which IVs are administered as part of my daily medication, and ensures that life-saving drugs, such as Adrenaline during an Anaphylactic Reaction (which subsequently occurs during a flare of my Mast Cell Disorder) can be given quickly and reliably. - I also have a Jejunostomy - a tube that goes into the beginning of my bowel and it's through that that I receive feeds for nutrition, and my regular medication (which, considering the 60+ tablets I am prescribed to try and improve some of my individual symptoms, comes in very useful! - My bladder doesn’t work and I’m now too immobile to self catheterise; meaning I have an indwelling urinary catheter permanently as a result, with views of soon getting a more permanent option. - My joints are very weak, loose and painful and so dislocate frequently meaning I am often in casts or splints to support various parts of my body, and as a result have metal-work in both thumb joints as an attempt to fuse them permanently. - Due to a severe gum infection that damaged my teeth beyond repair in a matter of weeks, I have full top and bottom dentures following full dental clearance.
I started my blog a couple of years ago (in 2014) and used it purely as a place to write a few rambly and ranty illness-based posts, but mainly as a place to write updates on my health specifically for my family and friends to keep up on where I am and how I was feeling from time-to-time.
As it’s developed though, my blog has become my “safe space“ - the place wbere I can still let people know about my health, but something that I focus on and invest a lot more time anf effort into, run my ‘Bravery Bottle’ project from, write posts about orher aspects of life on and is generally my main hobby as someone with multiple chronic illnesses and therefore lots of spare time.
Please get involved, leaves comments and messages, and participate in my project if you have any type of chronic illness yourself. Also, please visit the Bravery Bottles shop - all profit is re-invested into the project, and the JustGiving page to donate to the project if you can. Despite common misconception, there’s nothing that you ‘shouldn’t ask’ about my illnesses. In fact, the more that’s asked about, the better it is for awareness and understanding! Thank you for your ongoing love, support, and involvement in all I do - it makes such a difference in motivating me the running of my 'Bravery Bottles' project, but also in staying positive and holding out hope for an improvement in my own health for the future. All my love, Katie xxx