Humans of ME/CFS

I have always been unwell. But, things started to get worse after a bad bout of Glandular Fever when I was 11. After 7 years of blood tests, scans, specialist appointments and thousands of dollars in doctors’ bills, I had almost given up on ever finding out what was wrong with me. So, I tried to get on with my life as best I could. I was finally diagnosed with ME/CFS and was both relieved and overwhelmed. Knowing what was wrong was a weight lifted off my shoulders, but that weight was quickly replaced. Being diagnosed with a neurological disease at 23 wasn’t in my 10 year plan.

When you are my age you want to be living your life, going out with friends, hopefully meeting the love of your life, going on holidays, working, and living an active, fun lifestyle. Missing out on all these opportunities is upsetting, to say the least, and I am left wondering if I will ever be able to lead a “normal” life. I have big dreams. I want to be the woman who can have the big career and the big crazy family. I want to do it all.
But, while I dream of the wonderful life I have always wanted, I am literally learning to walk again. Who would have thought that someone with such big plans would be back to the absolute basics? Most days when I wake up, it feels like just opening my eyes is an achievement. My body aches as if I have been bruised from head to toe. I rarely know what day it is or remember the things I have discussed with my family only 5 minutes after the conversation occurred. My hands shake uncontrollably and my senses are on overload, with most sounds or smells making me feel sick to my stomach. On my worst days, I struggle to breathe, my heart beats irregularly, I need help to shower, I need help to walk so I don’t fall over, and I need help to achieve the most basic of chores.

I don’t want this to be my life. But, I know it would be so much more painful without my family. My mum is my full-time caregiver and my heart is so eternally grateful for her. I see the pain in my parents faces. They so badly want to help me but they can’t. I can accept that I will, more than likely, have this disease for the rest of my life. But, I cannot accept that there are such scarce treatment options for myself and the millions of other people living with this debilitating disease. We need help, we need research, and we need proper medical treatment. Believing that, one day, I will get to have all the things I dream about, is what gets me through each day.