I don’t remember what it feels like to sleep and wake up refreshed; ready for the day. I don’t remember how it feels to walk without pain and aching in every muscle. I wish I could remember what it felt like being well. Now I wake up every morning and feel exhausted; like the 9 hour sleep I just had was nothing. I watch everyone going about their lives while I’m stuck inside, doing small bits of housework that makes me feel like I’ve run a marathon. I take pain killer after pain killer to manage the pain that covers my whole body. I can only manage to stay awake for 6 hours before I feel ill and have to go back to bed; I sleep for a couple of hours so I have the energy to get through the rest of the day.
I developed M.E after having Glandular Fever, a virus that the majority of people recover from and never think about again. All I think about is how that virus changed the whole course of my life. It’s like my body gave up in that moment and decided it was going into hibernation. I wish my body had been strong enough to fight that virus off. Now if I catch a cold or another virus my whole body crashes and I barely function, I’m overwhelmed by illness.
Every day I wake up exhausted and the fatigue follows me through the day, getting worse and worse. I can’t concentrate, my head feels like it’s filled with cotton wool most of the time. My social life doesn’t exist because after a few hours out of the house, my body begins to complain and my energy declines quickly. I zone out of conversations, get my words mixed up and forget what I was saying. People don’t understand that I’m not simply tired, I’m severely fatigued and every part of my body screams for sleep.
2 years after I was diagnosed with M.E, I got a diagnosis of Fibromyalgia. I experience pain for no reason at all, like I’m being punished internally. Every muscle aches constantly, every joint seizes up and complains when I move. I have the body of a 90 year old woman despite being 25. I struggle to undo jars and bottles, I can’t hold a kettle if it’s more than half way full. Some days I can walk into the local village and other days, I can barely make it to the end of the driveway.
Since my initial diagnosis, it’s been a turbulent journey. I’ve taken people’s judgement and felt guilty for having an illness that other people can’t physically see. I’ve been called a liar, I’ve been told it’s all in my head. I’m at a point in my life now, where I’ve come to terms with my limits. I have to listen to my own body and rest when I need to without feeling guilty or ashamed. I’m trying to manage my condition the best way I can. I’m working on getting a degree in English Language and Literature and I’m living my life the way I need to, with baby steps and a lot of support from family. I’m determined that this illness will not define who I am, it may limit me and place obstacles in my path but I am not my illness. There are days I want to give up fighting, moments of real darkness but they are not as strong as my will to live and enjoy life and I hold on to the hope that one day my body will wake up and decide to recover; so I can remember what it’s like to sleep and wake up refreshed, with energy to last the whole day.