Her Story: Living with Chronic Illnesses
The day after my 13th birthday, I was bed-bound for eight months. I had just thrown my party at the Village hall and invited all my friends, even created a playlist for the occasion. However, the next day I couldn’t lift my head off the pillow. At first my Mam thought I was suffering from the flu because my symptoms were mainly immune system abnormalities, such as temperature control, sore throat and headaches. After, a week turned into a month. I got referred to the hospital for an appointment and that’s when I first heard of Myalgic Encephalopathy or M.E for short. The prominent symptom of M.E is severe fatigue and malaise following mental or physical activity. But there are other main symptoms too, such as cognitive dysfunction, exercise intolerance and depression. As well as that, over the next few years, I was diagnosed with Fibromyalgia (the most common symptom of this is widespread pain, that is felt throughout the entire body, that is felt in the muscles, tendons and ligaments around the joints) and Hypermobility (common symptoms are injured or dislocated joints, as well neck pain, muscle strain and joint stiffness).
I’ve spent a total of two years and a half bed-bound. People tend to think that staying in bed all day is the ultimate way to spend your life, but I can tell you it is hell. I was that weak, I couldn’t feed myself, never mind take a shower or even the simplest of task walking across the living room, which felt like a marathon. Fast forward a couple of years, I was in my final year of sixth form, and although I was no longer confined to my bed, trying to spend a whole day in school resulted in two weeks off. Despite that, I focused on my studies and worked hard enough to earn a place at The University of Aberdeen.
It’s down to years of physiotherapy and an amazing support system that I’m able to wrap my head around these illnesses that I’m going to be battling for the rest of my life. I’ve had to learn to pace myself and think about the consequences of each action I take. If I want to go out on a Tuesday, I need to understand that a couple of days later I will have a bad day. My personal favourite piece of advice that I still tell myself is that there is no warning when a bad day is going to strike, so I just need to go with the flow and understand that I have many good days too. I’d like to say it gets better but it doesn’t, these are chronic illnesses. But I feel that the more I learn to pace myself and accept that sometimes I need a day off from the world, the easier it is to understand that these illnesses don’t have to define who I am, they just represent one of the many factors that make me the person I am today.