So I’ve been wanting to try blogging for a little while now, and seeing a lot of my friends giving it a go has finally given me that kick that I’ve needed!
So anyway, lets get better acquainted. My name’s Emily (please call me Em, can’t stand being called Emily) and I’m 19 years old and living in the Midlands, UK. I’m currently in my last year of studying A-Levels and am in the process of applying to university to study either psychology or Special Educational Needs, equality and diversity- I’m renowned for changing my mind so I’m hovering between those at the moment and hold conditional offers for both at my firm university choice. I’m also a member of Girlguiding UK and am currently a senior section member, peer educator and spokesperson. I’ve made so many friends through Girlguiding and I still love it, 14 years after originally joining.
Onto the medical side. If you’re not already sat down, now might be a good time as we could be here a while. My current list of conditions stands at:
- Salt Wasting Congenital Adrenal Hyperplasia– a condition in which the adrenal glands (located above the kidneys) don’t produce enough cortisol and can cause all sorts of different problems including adrenal crisis which can be life threatening.
- Polycystic Ovarian Syndrome– basically cysts on the ovaries! Can cause fertility problems, pain, weight gain etc.
- Irritable Bowel Syndrome– what it says on the tin? When medicated everything’s fine, but can flare up with different foods.
- Ehlers Danlos Syndrome type III (hypermobility type)– a condition where the body’s connective tissues are too weak to hold the joints in place, causing pain, subluxation, dislocations and problems with the digestive system, eyes and other organs. Use of splints and mobility aids along with physiotherapy and pain management are the only current treatment.
- Fibromyalgia– I still dispute this one as it’s often misdiagnosed before the diagnosis of EDS. But basically nerve pain, chronic fatigue, muscle pain and tightening, brain fog and migraines.
- Juvenile Rheumatoid Arthritis– excess fluid build up around the joints (mine particularly in the hips) causing pain, problems with the immune system, stiffness, fatigue and reduced movement.
- Telogen Effluvium– stress related hair loss (including eyebrows!).
- Glucose Intolerance– pre-diabetes, consequence of SWCAH. Sugar levels are difficult to control.
- Insulin Resistance– similar to above, another consequence of SWCAH.
- Wisdom teeth impaction– my teeth are growing backwards into my head!
- And problems with my eyes which I’m undergoing tests for!
And we won’t tempt fate to add any more to the list (but I also have a trigger thumb which I’m finally having surgery done to fix it in a week!). Due to these conditions I have to see lots of different specialists, take a lot of different medications, have intense physiotherapy, and over the past two years or so I’ve become more reliant on mobility aids including Tilly, my powerchair. I also take part in any clinical trials I can to help other people with my conditions- the last one included a 90 minute brain MRI in which I fell asleep, oops!
So with all these things under my belt, I was pretty sure I could make an interesting blog! I try my absolute hardest to take every new diagnosis, symptoms and health problems in my stride- and I’m determined to let nothing get in my way of getting where I want to go!
Currently I’m under a lot of stress with college as we have a lot of deadlines for coursework coming up as well as all the other work and revision your teachers ever so helpfully throw at you AND my upcoming surgery, so my hair and eyebrows are deciding that they don’t want to stay in my head. But that’s okay, it’ll grow back (hopefully!). There’s also been a lot of illness going around, but luckily I think I’ve got over the worst, but I’ve been on a steroid stress dose (a requirement with SWCAH) for over a week now. Cue grumpy and ‘I want to eat the entirety of the fridge’ me. Sorry mum.
I’m also getting very stressed about my upcoming trigger thumb release surgery. It’s a minor operation, but unfortunately when you don’t produce cortisol (thanks body) it becomes a military operation. I opted to have a local anaesthetic as my body doesn’t cope too well with a general, so I’m kind of stressed about that too! Lots and lots of stress for someone that doesn’t produce stress hormones!
Anyway, that’s a basic summary of me for now, and I look forward to seeing you along my blogging journey!