Hi, I’m Amy, one of the co-founders of Amity Heart Collection. How did we get here? Make yourself a cuppa, find a comfy spot and I’ll tell you all about it.
I have always wanted to start my own business but never knew which direction to go in. It’s funny how life leads you to where you're meant to be.
I have lived with chronic “headaches” since the young age of 12, during my first pregnancy I endured migraine everyday but didn't know it. Crazy you may think!
I presented to the doctor time and time again over the years, and they would say "you’re just tired, you’re doing too much, try and get more sleep". Our two children are 13 months apart so resting and sleep was limited and we don't live near family for extra support. I can’t actually believe that no one could figure out what was going on.
I got used to feeling dreadful on a daily basis. My symptoms were brain fog, hot flushes, dizziness, constant headaches, on and off vertigo, transient aphasia, and at times I wouldn’t even have the ability to think clearly. This was my new normal and I was so unwell but kept pushing through.
Mid 2020 I had a head injury resulting in concussion. I believe this made my symptoms much, much worse. Something I really didn’t think was possible. How wrong I was. My ears started to ring so loudly it was making me feel like I was going mad. I actually lost 30% of my hearing in one ear due to the loud noises in my head. My hearing came back but the ringing, popping, and crackling better know as tinnitus is still 24/7. I started demanding blood tests, do I have high or low blood pressure? Do I have diabetes? A tumour? I knew something wasn't right. I had so much anxiety and constantly felt overwhelmed. My symptoms were daily and gradually worsening over time.
Then in September 2020 I woke up one morning feeling my regular self, absolutely horrible! I made a coffee and the next minute I was in bed in a dark room, with severe dizziness, vertigo, nausea, head pain and all the rest of it. This is where I stayed for the coming days, weeks and months. I’ll be honest, I couldn’t see the light at the end of the tunnel it was pure darkness. I take every moment one step at a time and that road has become very long and winding.
I was referred to a specialist who requested an MRI and lumbar puncture. Then I saw a few neurologists who diagnosed me with chronic vestibular migraine, chronic migraine with aura, abdominal migraine, menstural migraine and visual vertigo. Great, now it has a name, or many of them in fact but naming what was going on did not make things any better.
I have been unable to work in any capacity since then, I became incapacitated by migraine for many months. This was when my mum Denise uprooted her life, left secure employment and her coastal home for an extended time. Mum stayed with us, helping my husband with our children and myself. Between them, after many months we got through a very challenging time. Once I was feeling a little better mum and I would chat about starting a business of our own. This idea was a great distraction from what was really going on. Something to channel my creativity in and possibly an income down the track. Before we knew it, Amity Heart Collection was born and we haven't looked back.
It is now 19 plus months since that day and I am still unable to work, I can't be in a supermarket or a shopping centre for very long, I can't perform regular daily tasks like vacuuming or mowing the lawn as the loud sound and vibration causes me severe head pain.
During this time I have tried 22 different medications, some didn't help at all, some had horrible side effects such as loss of appetite, nausea, vomiting, diarrhoea, dizziness, tingling, dry mouth, weakness, fragility, light headed, drowsiness, insomnia and some had terrible reactions, dramatic changes in mood, behaviour, increased heart rate and some caused hospitalisation from severe head pain, breathlessness and potentially mild serotonin syndrome. The process of trying to find something that works for me has been very demanding and challenging both mentally and physically and still with no real solution. Currently I use multiple oral medication tablets and vitamins, CBD oil, a monthly CGRP injection and have 30 plus botox injections every 12 weeks. Hopefully soon my team of health professionals will find a way to decrease my migraine days that are currently at 100% of the time.
I have also changed non-medical elements, lifestyle changes, more meditation, relaxation and I now have a sleep schedule that I adhere to. I have tried to erase as much stress from my life as possible, I love to spend time in nature whether it be a walk with the family and our dog or just sitting in our garden.
I avoid supermarkets, shopping centres and petrol stations. You will always see me with my colorimetry glasses on or sunnies and a hat. My family and friends know not to wear perfume, deodorant, hairspray, aftershave etc if they visit. We've had to change all the lighting in our home, we now have dimmers installed on all the light switches, my poor family is used to living in the dark! All of our personal hygiene products are natural and we use natural cleaning products as I am highly sensitive to chemical smells. We have removed all candles, room spray, reed sticks, fly spray and more from the home.
We try to regulate the home's temperature to ensure there are no heat spikes, if I get too hot or my heart rate increases I instantly become dizzy, lightheaded and experience terrible head pain and more migraine symptoms.
When I was first diagnosed I was in a very bad place. I couldn't stand by myself and was bent over to the left thinking I was standing straight. I would need assistance to get to the bathroom or crawl and hang onto the walls. I spent months in a dark room with throbbing, pulsating, stabbing, pounding debilitating head and neck pain. Some symptoms were allodynia (pain when touched), pins and needles in my hands and feet, nausea, dizziness, vertigo, sensitivity to movement, smell, sound and light. I would find it painful to think and would have difficulty speaking, this is called aphasia which impairs your ability to process language both written and spoken. I found it very hard to put words together and had no hope of writing.
Amity Heart Collection is a way for me to help support my family while living with migraine. I tailor my day and unfortunately my family's life around my migraine. I have found sewing a real outlet and to be very therapeutic.
I hope to raise awareness and encourage others who live with migraine or a chronic illness to strive for what they want. I refuse to give up or give in and I welcome you to come along with me as I learn to live with chronic migraine. I attempt everyday to be positive and present with my young family while I develop and run a successful business.
Love Amy. xo