How I Got Here. AKA from Healthy to Hell

We – meaning myself and my doctor – can trace the beginning of this hell to April 2014. I was studying a Bachelor of Arts at a university in Sydney when I woke up one day and could barely walk. My body twitched and trembled. I remembered watching my hands, feeling as if they were suddenly alien to me.

I skipped my next class and went to the nearest GP. I tried to move quickly but it was as if I were wading through water. Luckily, it wasn’t far. I can still picture the blue-gray colour scheme of the waiting room. The wailing of sickly kids.

The doctor had no answers. They took some blood, gave me a certificate for missing class and sent me home to rest.

Then, at about 7pm that evening, the doctor I saw called me from his mobile. I could tell by the distorted audio that he was talking hands-free while he drove. He tells me to go to the emergency room. My white cell count was at 23,000. Which, apparently, was very bad.

Medical students take turns trying to put a drip in my veins. Blood is drawn. Pee in this. Lie down there. Does this hurt? How do you feel? You look a bit pale.

I joke that it’s just how my face looks. I’m scared. I was a healthy person. I wasn’t too into exercise but I ate well. Didn’t have more than the occasional cold. I had never broken a bone or needed stitches. Hospitals were for people who were sicker than me. Surely I couldn’t be that sick?

Four days in hospital with antibiotics through a drip and then the doctor shrugs his shoulders, writes down ‘viral infection’ and has me discharged. They thought it might have been leukaemia, but there was no sign of cancer.

Two months later, I’m in agony with three slipped discs and muscles that spasm with the slightest pressure. I go to physiotherapy for three months and I breathe a sigh of relief. That was it. It was over.

I would have another several bouts of being unable to walk, of strong pain in my legs, over the next two years. I would be tested for lupus, rheumatoid arthritis and a host of other diseases. Everything came back clean and the doctors sent me away.

Then, in August of last year, I started having the worst digestive problems. I was sleeping more than nine hours a night and waking up tired – I didn’t see how this was a problem, I was always tired. It was just what I knew. I was put on a gluten free diet for seven months. It eases the digestive problems, but does not make it go away. The pain in my legs returned, and as the months passed, it spread. My legs, my back, my hips, my wrists and hands. Headaches, nausea, dizziness, fatigue. Pain, pain, pain.

The wrist pain is the worst. I live with my hands. I’m a writer, an artist, a cook. I derive joy from these things, and the pain took it away from me. My wonderful partner, Patrick, and my mum were supportive and helped me when I couldn’t help myself. But I hated being so dependent.

My doctor finally gave my hell a name – Fibromyalgia. A chronic disease with over a hundred symptoms. Every ill could be attributed to this disease. And there was no cure, only treatment. I was struggling to work a full day at my full-time admin job. I’d run out of sick leave. I felt trapped. I knew that at some point, I had to get out of full time work, but financially that wasn’t feasible. How could I afford to live if I couldn’t work?

On one of my many bedridden days, I watched a documentary on Netflix called Minimalism: A Documentary About the Important Things. It followed a few people, but centred on two young men called The Minimalists as they went on a book tour and talked about their journey into minimalism. They were happy. They had financial freedom. They had less stuff.

I will be the first to admit that I’m a shopaholic. Clothes, books, games, stationery, whatever. I hoarded. I was constantly buying things that I really didn’t need. I could feel the weight of maintaining an overflowing wardrobe when I could barely manage laundry. Maybe the key was to get rid of it.

I watched Minimalism again and again. I bought books, listened to podcasts, looked at half a dozen blogs about this thing called minimalism. I wanted to try this. I wanted to see if living simply, living deliberately, could help give me the space – physically and mentally – to cope with my disease.

That’s where this blog comes in. There are millions of people struggling with chronic disease and mental illness. I don’t know how much this journey will help me, but I want to put it out there. Maybe it will help someone else.

My name is Alexis, and this is my minimalist journey.

 

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