Monday, 16 May 2016

Tasha's perspective: Denial

This post is part of the 'ME from another perspective' series which I am running to contribute towards ME awareness this year.

I was overwhelmed by how much Tasha's experiences resonated with me, ME is so often denied by society, but also ourselves. Coming to terms with what had happened can be the hardest part of being ill. It is so important to reach a place of acceptance in order to grow and adapt as a person.

The seven emotional stages of grief are as follows: shock/disbelief, denial, bargaining, guilt, anger, depression, and acceptance/hope. As someone with a chronic illness I often experience all seven stages on a monthly, weekly, daily basis. I grieve for the ‘old me’, who partied and studied, travelled and socialised without second thought. A seven hour stint in the library followed by a night of excessive drinking or out for dinner with friends was second nature. Now everything has to be meticulously calculated, the pros and cons weighed up, was the high pain and all encompassing fatigue worth the short moments of fun? Alcohol is a complete no go but unfortunately hangovers are not a distant memory. Every morning I wake up with a headache, sore limbs, blurry vision, confusion, fatigue and nausea, without the fun night and snapstory to even make up for it. The sickening, unrelenting rollercoaster ride that is ME/CFS is anything but linear. Thus, my seven stages of grief jump around, overlap and intertwine. Before experiencing shock/disbelief I was overcome with denial. Denial is my focus for this post, a very damaging emotion to inflict upon a body which needs to slow down.

Summer 2015: I had a job working for a kids camp in Long Island, New York. The plan was to work for two months and then travel a bit before flying to my friend’s wedding in Canada, until coming back to university to complete my final year and graduate. Amazingly and luckily I am still on that path, but not without a few major potholes to say the least. Half way through the summer I became unwell. I tried to brush it aside, convincing myself it was a combination of hangovers, late nights and early mornings; days spent running after 7 year olds. Anyone would be tired and achey right? Except, after maybe a month of working I couldn't run after the kids anymore. After lunch we had swim time, I’d make up another excuse to not get in the pool and would sit on the bench, falling asleep with my sunglasses on. It felt like conversations were happening through a glass window, underwater or in slow motion. My hearing and vision were distorted, it felt as though another layer of skin had been added to my arms and legs, they felt hot, heavy and itchy. I became disassociated with my body and with my surroundings. This is actually called “depersonalisation," a symptom of ME, an illness I was then blissfully unaware of. Deep down I knew something was wrong but I was in denial mode. I kept drinking, partying, barely sleeping and then working all day. One day after work I went on a bike ride with my now boyfriend, but then attempting-to-flirt-with-love-interest. To my absolute horror and embarrassment I collapsed and hyperventilated on the side of the road. Ok girls and boys, imagine this happening to you (while trying to retain some tiny fragment of dignity) in front of the person you're trying to impress. I convinced him - and myself - that it was down to dehydration. I had a Coke (very hydrating I know) and hopped back on my bike. While I cycled on, dignity lost forever, I panicked about my decreasing fitness levels. I use to go to the gym everyday, this made no sense?

While all this was happening, there was an insane amount of Facebook messages being bounced back and forwards between me and my mum (Queen of Worry Land we will call her). I kept sending her lists of my symptoms, describing how weird, unfit and unwell I was feeling. Queen of Worry Land came up with some worrying explanations: are you pregnant? Diabetic? And some less worrying: do you have an ear infection? maybe you should stop drinking every night before going to work early in the morning? So I stuck to the very last explanation which neatly fit into my reputation as a lightweight with an inability to stoically handle hangovers.

Camp came to end as we waved goodbye to the kids in their yellow school busses and counted up the dollars from our fat envelopes of tips. The plan was to travel around America with our tip money before I flew to Canada. I flew to Charleston to stay with a friend from camp. One morning I woke up with an inability to move. It felt like a giant was sitting on my chest, as though my skin was melting away from my body. The pain searing down my shoulders, back and legs was so unbelievably painful but in classic me fashion, I didn't want to waste my time there. (I use to hate the thought of wasting a day doing nothing but now it’s an integral part to my recovery). I Facetimed Queen of Worry Land and without saying much she knew something was really wrong. Her worry senses were in overdrive and so were mine. I knew I should be home, talking to a doctor but I still had three weeks before my flight back from Canada.

I met up with my boyfriend and his friends in Chicago, I look back at the photos, but my memory is a blur, I felt like I wasn't present, like I was viewing my surroundings and hearing conversations from outside of my body. I carried on even though my back was in agony, alcohol made me feel terrible (more terrible than usual) and I could barely walk several miles without wanting to vomit and collapse. I wanted to say yes to everything they did but my body was screaming at me to stop.

Eventually I got back to England and felt awful. In my bubble of denial I pushed it aside as jet lag, the jet lag that still hasn't subsided. Well, the test for Lyme Disease came back positive and here we are, Lyme induced ME/CFS and (what I also suspect to be, undiagnosed) Fibromyalgia.

A friend of mine said to me, but it looked like you had the summer of a lifetime. Yeah I met amazing people, including my boyfriend and some lifelong friends, I got to live in and travel America. However, the majority of my time was spent agonising over what was wrong with me whilst in a constant conflicted battle of denial, sending my poor mother messages 24/7 while relentlessly refusing to give my body what it needed. Deep down knowing something was wrong, but denying its existence because I was thousands of miles away from home.

I no longer deny the existence of my illness but the more I read and the more I explore, the more frustrated I become with the denial of the severity of Lyme Disease, Myalgic Encephalitis and Fibromyalgia. It is hard enough for sufferers to come to terms with their chronic illnesses, the loss of their past lives, so please, society, don’t deny its existence too.

Thank you so much to Tasha for writing this blog post! 

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