Hi, my name is Amy, and here is my story.I was born in Trafford, Manchester, UK in September 1996. I was born prematurely, and spent time in an incubator until I was strong enough to come home. I grew up a fairly normal and healthy child, the only problem I ever had was I couldn’t see out of my left eye, and sadly, now I am almost blind in that eye. I had a fairly normal childhood and grew up in Manchester until I turned 11 years old. That was when my parents told me that we were moving to Australia! The last thing I wanted to do was get up and leave my friends and family to go to a foreign country. Sadly, despite my best efforts to try and get my parents to stay, in September 2006 we moved to Perth.
At the age of 15-16 years old, I started experiencing pains in my muscles and fatigue. I suffered with this throughout the rest of my time in secondary school, but this didn’t stop me, and I carried on with my studies and hanging out with friends the best I could. My final school year was possibly the most challenging, I didn’t feel myself, I was very run down and found it extremely hard to concentrate. I remember telling my parents at the time, but they just assumed I was staying up on my phone all night. I completed my final exams and returned to England for a holiday; this is where things took a turn for the worst and my health problems became apparent.
Being only a few days in the country, I was ice skating with my cousin when I fell down straight onto my knee caps. The pain was so bad, I had to lay there in shock for a minute before deciding to get up and “walk it off”. Over the course of the next week my knee continued to swell and bruise to the point where I was forced to go to A&E. The doctor explained that I had a fractured patella/ knee cap and broken growth plates in my knee. He was concerned at the fact that my growth plates were still present at the ripe old age of 17. My knee gradually healed, but my fatigue was getting worse; a simple food shop was sometimes too much. My vision was also becoming very blurry, and I knew something wasn’t right.
One day I was rushed to A&E after my Orthopaedic doctor found serious abnormalities with my blood work and by this point, I was ghostly pale, I hadn’t gotten out of bed for 2 days and I was barley eating. Doctors found that I was extremely anaemic with a haemoglobin level of just 5. I was diagnosed with Microcytic Anaemia. The doctor refused to give me an iron or blood infusion and sent me home on supplements, I went home feeling worse than I arrived. I got worse as time went on, and my Mum took me back to A&E to see a different doctor who immediately gave me an iron infusion. I still did not feel right and there was no real signs of improvement. I was terribly lethargic and weak. My Mum took me back a third time to A&E; my haemoglobin had barely changed and my oxygen levels were low. I was given an iron and blood transfusion and admitted to the Children’s ward for testing. Here, I had every test under the sun; I was diagnosed with Irritable Bowel Syndrome, Fibromyalgia and Chronic Fatigue Syndrome. In many ways, I was relieved to finally have a diagnosis.
Months passed and I was struggling with fatigue and weakness, I also started getting heart palpitations, I knew something was wrong. One particular night, I collapsed on the sofa and my heart was going extremely fast, my Mum rushed me to A&E. On the way in the car, I started deteriorating, my whole body turned numb, and my hands were stuck in one position, I almost felt paralysed. I could barley walk from the car to the emergency entrance, I barley made it through the doors before passing out and collapsing in the waiting room (boy was that embarrassing)!
I was rushed through to resus where they put the defibrillation pads on my chest, oxygen on me and were trying all sorts of things to bring my heart rate down. It was over 200+ beats per minute. Unfortunately, doctors had no luck getting my heart rate down and ended up having to shock me. After I came back round from the sedation, I was very groggy and my chest hurt. I stayed in hospital receiving treatment for my heart for over a week when they finally discharged me. I had several new diagnosis’s including; Inappropriate Sinus Tachycardia, Heart Murmur, and possible Postural Orthostatic Tachycardia Syndrome (POTS): an abnormal increase in heart rate that occurs after sitting up or standing. It typically causes dizziness, fainting and other symptoms. I was also put on medication , a beta blocker called Metoprolol.
Living with POTS for the last year has been challenging. It has been difficult to manage my iron levels, heart rate, blood pressure and fatigue, resulting in fainting and broken bones. I ended up fainting at the top of the stairs and falling all the way down to the bottom where I lay unconscious. I also started having seizures, progressing to the point where the bed would shake and I was biting my lip and tongue. Due to the seizures, I had pretty much lost all movement in my legs. I had trouble getting in and out of bed, and had to learn to walk again. After some time, I was diagnosed with Non-epileptic Attack Disorder; as of April, 2016, I have started on several new medicines, including; Ivabradine, Bisoprolol, Midodrine, Mebverine, Buscopan, Cyclazine, and the list goes on. After extensive testing, I was diagnosed with Hypokalemic Periodic Paralysis: a rare, autosomal dominant channelopathy characterized by muscle weakness or paralysis with a matching fall in potassium levels in the blood (primarily due to defect in a voltage-gated calcium channel. Having this diagnosis has been such a relief for me, it shows that a) I am not crazy, and b) It was never my fault as it’s genetic.
I was discharged April 13th, 2016 with my zimmer frame. I am now on a special diet which includes no crabs or glucose because it’s a trigger for my attacks. Other triggers include; temperature change, exercise, and even flashing lights. I’m currently suffering from bad Glycemic Index issues which are yet to be diagnosed and I have been diagnosed with Ehlers-danlos Syndrome type 3: a group of rare inherited conditions that affect connective tissue.
This whole experience, although challenging in many ways, has made me realise that there is no time to waste, you really have to live every day to its fullest. Life is short, but you can make it last, you must cherish those moments that make life worth it! To anyone suffering similarly, I would say, don’t give up, no matter how much you think your illness/condition sets you back in life, it doesn’t! These experiences make us stronger and makes us unique. I have the following quote written on my wall: “Don’t fake being okay. You only hurt yourself. Be real with what you’re going through. Just don’t let it consume you. Balance”.
Thank you for reading my story.
Amy currently runs her own website to help others in need and documents her own journey, please follow the link: http://www.chronicallyfighting.com
Amy has also been nominated for a health activist award, if you’d like to vote for Amy, please follow the link: https://awards.wegohealth.com/nominees/12712