You invaded my body at a cross roads in my life. It was Spring 2011, I was married and a stay at home mum to my special needs child, my beautiful wonderful step son. But I was starting to feel suffocated, isolated, and ‘stuck’. I didn’t know what else I needed, but I knew I needed more.
Then one day I woke up and didn’t feel quite right. This quickly progressed to a fatigue I’d never known and a host of other bizarre symptoms. Doctors were stumped and after cycling through possibilities like a kidney infection, leukaemia, and glandular fever, they finally gave up and labelled it as a ‘virus’. I knew I was being fobbed off, but at that point I didn’t care, I assumed I would bounce back and everything would be fine.
I had no idea it was the start of the 6 months of hell and life would change forever. By the end of that year my life had unravelled and one by one I’d lost everything. I was divorced, jobless, homeless, and bedridden. To gain a roof over my head it meant losing my relationship with my son. I believed it would be temporary, but as the months went by, I realised life would never be the same again and I’d never get back anything of what I had. Doctors were still stumped and friends began to fall away. My health was deteriorating rapidly. I was too weak to lift metal cutlery, I would often lose all feeling in my legs, and I struggled to string a sentence together. I begged people to help me die as I couldn’t stand the constant severe vertigo – a feeling of losing your stomach as you fall through the air, 24/7. I had frequent crushing chest pains that at first I thought would finish me off, but to my dismay, didn’t.
Illness without a name, you made me feel terrified and alone. You cost me my step son. You made me feel like my life was over, and the worst thing was that you made me feel okay with that. You stopped me wanting to live. You took away my drive, my passion, my humour, my whole personality, not only did you nearly kill my body, but you nearly killed my soul.
Doctors were edging me towards a ME/CFS diagnosis. I refused. I either wanted to die, or I wanted to find the real cause so it could be treated, those were the only acceptable options to me.
Then I found you. Someone I barely knew from the United States posted about Lyme disease on Facebook. I’d never heard of it, so I Googled. With every word that I read my gut instinct got louder and louder. It was like a cat that wanted to be fed, it got more and more unavoidable. I knew I’d found you.
Lots of arguments with doctors and negative (unreliable) tests later, I dropped the mainstream healthcare system and got tested at a lab in the US. On the 13th August 2012 I got the results, it was positive. I didn’t want to die anymore, I’d found my reason to live and I had hope I could get better. Beating you felt in my grasp. I cried with relief and joy for three days, I’d wake up in the night thinking it was all a dream and have to look at the results again to check they still said positive.
2 years later I’m still fighting you. but things have changed drastically. My health is considerably better, I’ve added more disease names to my resumé and inch by inch, I’m taking my body back. As I’ve started to improve, I’m getting my life back too. Once my brain was functional again, I was able to co-found Lyme Disease UK. Day in day out, I help people who are in the dark place I was, who are suffering, scared and alone. When I was in that place there was no where online I could turn to for help in my country, I didn’t know anyone battling not only severe life changing illness, but also the whole healthcare system. So with LDUK up and running, I was finally able to give people the help that I had desperately needed, resulting in many warm and fuzzy feelings. I also made some great friends who were on the same journey as me, I no longer felt so alone.
Somewhere in the past 2 years, I’ve come to accept the 6 months of hell. I still feel traumatised by it, but I no longer feel that it defines who I am. I’ve moved past it to much better things. I’ve come to realise that you have ironically given me the direction and purpose I felt was lacking back when I first got sick. I still hate you for taking me away from my son but it no longer feels raw. I know he’s okay, and that’s all that matters.
You’ve changed my life irrevocably, you’ve brought me to the brink of death and then given me a reason to live. You’ve also given me insight, empathy, passion and purpose. You’ve shown me people who are true warriors in the face of adversity. Kind, generous spirits who make the world a better place, people I didn’t know existed before you came into my life. You’ve made me feel so humbled, so grateful and so lucky to be alive, that I often feel truly blessed in a way I would never have felt otherwise. You showed me who my real friends are, and that my new partner is a wonderfully special, incredible human being.
My illness – you destroyed my life, and then gave me a new one. You helped me become the person I am today, the person my partner loves, the daughter my mother is proud of, and the friend that’s
totally frickin awesome helpful, kind, and occasionally funny.
I always thought that if the poop ever hit the fan, I would be the one cowering in the corner, but to my surprise, I wasn’t. I kicked some serious ass and got what I needed. I didn’t give up or give in, when I was at my weakest and most vulnerable I was the strongest I’ve ever been. My illness…. you proved to me that I’m stronger than I ever knew, and if I can survive you, I can survive anything.
One day I will kick your ass, and then I’ll move onto the next great challenge and kick it’s ass too.