ME awareness

My name is Molly, I am 21, living without a correct diagnosis and medication fourteen years I progressively began to get worse until I became severely unwell. Having now suffered from Chronic illness and disability for the past 7 years. After a long battle I have finally managed to re teach myself many of the things I lost.

Not long ago I began my own disability blog, raising awareness on disability inclusion and how hard it is to feel included within society. 

 As it is Chronic fatigue syndrome awareness month I thought that would be a good place to start as my first post here.

Myalgic encephalomyelitis (M.E) or chronic fatigue syndrome (CFS) affects around 17 million people worldwide. Most of those being women between their 20 - mid-40s, but can occur in children or teenagers. Altering one's life forever, creating debilitating symptoms many of which have drastic consequences. 

Ailments include: 

Joint Pain

 Brain fog 

Extreme fatigue 

Migraines 

Sore glands (with no sign of inflammation) Dizziness 

Feeling nauseous

Flu-like symptoms 

Heart palpitations

 Low or fast heart rate 

Sensitivity to light or sound

 Treatment for M.E rarely works leaving people to find their own answers and cures. In my case when having my last appointment with my pediatric M.E consultant she told me that adult care would be pointless, as I would "know more than them" bearing in mind this is after 6 years of failed treatments, my only treatment being access to Graded exercise therapy (GET). This requires sticking to a daily routine. An extremely hard task to accomplish as symptoms constantly go up and down. Personally, I find routine impossible as is the case for most people with this condition. A multitude of sufferers is disclosed as attention seekers, (even by doctors) accused of fakery recorded depressed or anxious.

 This isn't the case, crippling pain along with can cause depression or anxiety, but this is not its starting point. People's perceptions play a massive part in this. I feel my school could have done more to help me, instead, they failed to inform themselves. A failing body meant I couldn't manage a whole day. Leaving me to feel extremely judged by the teachers, most of whom failed to adapt for me. At a time I felt most vulnerable. 

Looking back I have wondered why no one other than my parents put up a fight for my basic human rights. Or why no one seemed to educate their children so they could. Without necessary adaptations accessing vital services can be unnecessary stress. People shouldn't feel disincluded because needs that could be met simply aren't. You don't ever imagine that you will lose the ability for accomplishing tiny tasks. 

Or that you could have your whole world is torn away within a matter of years, months or even days. Compassion is the key to being there for people, the way to be better is to learn. I try hard to educate myself on other people's ways of life, knowing from experience the feeling of judgment or having myself looked down upon. I've been called lazy, whilst one doctor told me to "get out of the car" after a good few minutes of explanation as to why I couldn't complete a supermarket shop. 

It made me feel dizzy and faint. Being inclusive isn't that hard. Read biographies, watch documentaries, join support groups, find social media accounts raising awareness alternatively ask questions. In a world where doctors can't get it right, you do begin to feel remarkably let down by society. Everyone can do their bit to help even if it's the smallest amount. 

M.E is not laziness, it's not fakery or attention-seeking. It's life demolishing fatigue, pain, missing events, partially missing out on life. It's the fear of being thrown to one side, whilst everyone lives their lives throughout the time they forget you exist. Your lockdown is a couple of months my lockdown will most likely last a lifetime.