Q&A

What made you decide to do this project? What inspired you from Lucia’s photography workshop?

I have had an Instagram account for a few years now where I share my life with ME/CFS (@musings_of_brainfog). My selfie skills where pretty limited, so when I saw that MEAction was hosting a self-portrait workshop I immediately signed up! I wasn’t able to join the workshop live, so I watched the replay. I learned so much from Lucia Doynel and decided that I wanted to use my new skills to raise awareness for ME/CFS Awareness Day. Hence my project was born! 

How did this project affect you?

It definitely increased my confidence in taking self-portraits! It also precipitated introspection, especially the body image shoot. It made me confront my relationship with my body in a way I had not explored before. 

What did you learn from doing this project?

I learned how to use multiple new photography tools including Frame Grabber, Lightroom and Snapseed. Grabbing images from video was revolutionary for me – I had not realised that it was so easy to do and works so well! It opened up so much photography potential for me! 

Anything else you’d like us to know about yourself or your project?

On November 18th, 2011, my 23rd birthday, I came down with a small cold. I have yet to recover. I spent about a week in bed, once the symptoms passed I still felt exhausted. Up until this point I was doing great! I loved my life! I had the top grades in my department at University and was half way through my MSc thesis in Ecology. I was also excelling in my physical pursuits of alpinism and rock climbing. I had just returned from a 3 month climbing trip in Europe. 

I somehow finished my five months of field work that summer. I had to acquire the help of my mother, friends and others that I begged into being field assistants. Without them it would have been impossible. During this time I kept expecting to get better, so every time I started feeling well I would try to do things. But instead I became unable to even care for myself properly on a daily basis let alone climb or write my thesis.

In addition to feeling exhausted all the time I had really bad ‘brain fog’, could barely concentrate and suffered from substantial memory loss. The doctors at university tested me for everything and found nothing. I was diagnosed with laziness. I had started researching the medical literature myself and figured I had Chronic Fatigue Syndrome (ME/CFS). The low recovery potential from the disease made me want to ignore it but I no longer could. The doctors could though. I went to four before I found one that was willing to listen and help me! 

ME/CFS is a very poorly understood disease. It is a diagnosis of exclusion – if you have the symptoms and nothing else seems to be causing it then you get diagnosed with it. They do not know what causes it or what is wrong in the body. Theories include mitochondria malfunction, a virus, or an auto-immune disorder. There is no known cure. I had to learn to live in a totally different way.

That was a decade ago. I managed to recover enough to finish my thesis and start working at my dream job. Sadly a year or so into it I relapsed and had to quit. I tried part time, flexible, home based work but even that was too much. I have now been unable to work for around 5 years. 

My health has ebbed and flowed over the years. Sometimes I’m able to do some physical activity- I even managed some sport climbing – other periods I’m stuck in bed. The past two years have been especially bad. I have spent a lot of time confined to my bed or on good days on the couch!