Today is Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) Awareness day, and like me 3 years ago, you might never have heard about this day or illness. I stopped blogging at a time that I was becoming very sick and trying to find out what was going on. But in the 2 years I've been away from this space, I've had a diagnosis and a lot of things happen. I'll share more about my story of getting diagnosed with M.E and how I'm doing today. But for now, on M.E Awareness day I'd like to share what this illness is really like. The illness that is so commonly misunderstood and thought of as 'just being lazy'.
Someone asked me a while ago, “what’s it really like having M.E?”. I was slightly taken aback because generally people don’t ask, people shy away from wanting to hear the horror that this illness can cause. I will, more often than not (unless I’m feeling terribly ill) happily talk someone’s ear off about what it’s like because raising awareness about M.E/CFS has become incredibly important to me. It’s a loaded question, one that would be answered differently by every single person that has this disease. No two people experience something the same way, whatever it may be and this is no different.
Many people assume it’s just extreme tiredness/fatigue, that judgement makes me want to laugh and scream at the same time. I wish that’s all it was, maybe then it would slightly (only slightly because as I’ll mention later the exhaustion is hell) easier to live with. Although it’s awful that I started getting a lot sicker, it meant that they were finally able to figure out what was happening. I can scratch my head all day as to what could have been the possible cause to my M.E developing but chances are I’d be here all day. I’ve had many infections, some pretty awful landing me in hospital and more common colds (which were always horrific and lasted much longer than average) than most children get in their childhood. So somewhere along the way, possibly after my pneumonia or severe food poisoning, I think M.E hopped on for the ride. But, I’m not a doctor so who knows but they don’t know much either on the cause so we’ll stick with my theory for now. Here's a little insight into the symptoms I've experienced and how they feel.
I’m sure I’ve probably missed some things out (there are 60 official symptoms listed on M.E websites and I don't experience all 60, those above are most of the main ones I experienced on a daily basis when I was at my worst) but just from that alone, you can see this disease is far from “just tiredness”. It’s horrific, it has taken away so many things from me and I wish every person out there knew what this really was like. I wish for not only my sake but for my mum’s sake it was just a case of me being exhausted and sleeping it off, but it’s not. No amount of rest or sleep will cure this or make it go away. Sleep can some times help prevent a crash from happening or an episode of where I faint, getting dizzy and have chest pains but it doesn’t stop them from happening completely.
I was very fortunate to recover (not completely, but to an extent that I could start living a life I was happy with) in the middle of last year, and it was the biggest blessing of my life. I will go into more detail about my journey with M.E in several posts. At the moment I have for the last few weeks, unfortunately been in a relapse. The first couple weeks were similar to when I first got sick (ending up in hospital, unable to move from bed and sleeping all day) and the fear I felt that I would start losing my life again to this disease was unbearable. However, the last couple of days I've felt the fatigue subside a little and my body has felt like it's able to handle a bit more time out of bed.
Every aspect of my life has changed in the last 3-4 years since I got sick. Every goal and aspiration has been crushed. Every hope I had for my future has had to be put on pause. It's changed who I am as a person. It's impossible that an illness like this doesn't change you. But I think now I can see it's changed me into a better person. It's changed my entire outlook on life, again for the better.
M.E is life changing and excruciating, whether you have it mildly, moderately or severely. It changes the lives of those around you. It isn't a simple tiredness. The sickest are bed-bound, tube-fed and haven't moved in years. It's a prison sentence to so many. So although I am sick, I consider myself lucky in many ways. I hope by sharing some of the symptoms I experience, you're able to see how M.E impacts every system in your body. I hope one day there will be a cure so people don't have to lose their lives, live in agony each day and lose their freedom.
Hey there, I'm Jasmine, your average 23 year old working in childcare and living in England. Maybe Tomorrow follows my journey living with mental health issues and multiple chronic health conditions, all whilst trying to have some fun along the way.
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