I’ve never told anyone this whole story before because I consider my diagnosis story to be when I was diagnosed with Fibromyalgia as that has and remains to be the thing that debilitates me the most. The truth is though, my chronic health journey started a long, long time ago.
I was born at 28 weeks gestation weighing just 2lbs 10oz which meant I was born fighting for my health as is with a number of chronic illness patients.
When I was finally home after months in hospital I was considered thriving and met milestones that defied time.
It was when I first started school aged around 5 that I was diagnosed with premature adrenarche. A hormone imbalance that meant I started puberty around 6 finally peaking with periods at 10.
This hormone imbalance undoubtedly contributed to my mental health decline. Prescribed antidepressants at just 14 years old after suffering my first of thousands anxiety attack, and severe mood disorders that later turned out to be PMDD. I’ve suffered with heavy and excruciatingly painful and disabling periods for 21 years.
I have battled with a hormone imbalance ever since. I’ve battled with chronic ‘unexplained’ pelvic pain and cysts that required numerous laparoscopic surgeries and removals in my teens and early 20’s. I continue to get crippling pain around ovulation, even now, post childbirth, and my PMDD is as prominent as it ever was.
Hormones triggered migraines but they are not the only cause. I have had migraines from 13 and they’ve become worse and more frequent with every passing year. As often as twice a week lasting 2+ days and never more infrequent than 1 in 2 weeks.
In 2016 I gave birth to my daughter after a horrific pregnancy that started with migraines and ended with me in a wheelchair from Symphis Pubic Dysfunction and later hospitalised with Preeclampsia. During all of these years I’ve never recovered from chronic pain. I’ve lived with it. Trialling every medication possible and to no end result.
After the birth of my daughter I was finally diagnosed with fibromyalgia. Over 15 years it took to get this diagnosis. People say things to me like ‘there’s no test for that so you can’t actually know you have it’ I want to ask them to swap places with me. Feel my pain for a day. Be told for 15 years there’s no reason for your pain. To me, getting a diagnosis was the first step to managing my conditions. It gave purpose to my pain by way of diagnosis. I needed it.
It also explained all the other symptoms forgotten by the wayside and often overshadowed. Fatigue/ exhaustion. Allodynia. Broken internal thermostat. Swollen hands and feet. Anxiety. Depression. Neuropathy. Noise sensitivity. Restless legs. TMJ.
The list really is endless.
But here I am. A working (part time) mum of 1, telling my story of a life survived and lived for 32 years against the odds. Yes I take double figures in pills to function. Thousands of pounds lost to homeopathic remedies. But I’m still here. Fighting. I want to live. I want to fight for my voice and yours. I’ve accepted my disabilities, but that doesn’t mean I give up on them. They have shaped me into a strong and resilient woman and that’s a strength I want to share with all of you. I want to hear your stories and be here for you.
You will feel guilt (it’s a given)
You will mourn for the things your body prevents you from.
Despite this you WILL be recognised for your strengths. I know you may not feel like it all the time, but you are warriors. We all are. 💜