BLOXAS – House for Taylor

Institute of Medicine; Board on the Health of Select Populations; Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Project Details

Commenced: 2018

Keywords

Chemical Sensitivity, Cognition, Darkness, Light, Myalgic Encephalomyelitis, Sensorial, Silence, Smell, Sound

I have been ill with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) for 3 years, initially getting sick with what was presumed a parasite, whilst on a trek through Peru a few months before I turned 21. Pre-illness I was an extremely active, fit and passionate young woman, ready to take on the world, make a difference and motivated for change. I spent a year at RMIT studying a Bachelor of Design, before leaving to travel alone through India and South America for 10 months, planning to return and follow an education path in Permaculture design and living. My trip was cut short after it became clear that I was not recovering from the illness, and instead getting slowly worse and developing new symptoms along the way. My family and I spent a good two years going from doctors to specialists, reaching a total of 24 professionals. Undergoing countless tests, we discovered various issues and abnormalities along the way, but nothing enough to explain my quickly deteriorating condition. I was slapped with the ME/CFS diagnosis and told “that there was nothing they could do, I’ll be better in 2 years”. I was faced with stigma, ill educated and often patronising remarks from various professionals, and even from emergency hospital stays. One Neurologist told me to “pick a day to be better by”, as it was all in my head.

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Myalgic Encephalomyelitis

by Taylor Ryan

I have been ill with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) for 3 years, initially getting sick with what was presumed a parasite, whilst on a trek through Peru a few months before I turned 21. Pre-illness I was an extremely active, fit and passionate young woman, ready to take on the world, make a difference and motivated for change. I spent a year at RMIT studying a Bachelor of Design, before leaving to travel alone through India and South America for 10 months, planning to return and follow an education path in Permaculture design and living. My trip was cut short after it became clear that I was not recovering from the illness, and instead getting slowly worse and developing new symptoms along the way. My family and I spent a good two years going from doctors to specialists, reaching a total of 24 professionals. Undergoing countless tests, we discovered various issues and abnormalities along the way, but nothing enough to explain my quickly deteriorating condition. I was slapped with the ME/CFS diagnosis and told “that there was nothing they could do, I’ll be better in 2 years”. I was faced with stigma, ill educated and often patronising remarks from various professionals, and even from emergency hospital stays. One Neurologist told me to “pick a day to be better by”, as it was all in my head.

I was forced to quit work, quit my life and move to the Barossa Valley, SA to live with my father and step-mother. I was fortunate enough that my family were in a position to support me, and my father working from home, was able to kindly take on the role as my fulltime carer. Despite resting, almost one year in, I had become so severe that I was almost completely bed and wheelchair bound, unable to brush my own teeth. My symptoms were so extreme, my body was just trying to survive each day. I was wasting away before my family’s eyes. This lasted a long terrifying 11 months, until I started trialling long-term intervals of Doxycyline antibiotics. I was able to walk again, eventually without aid.

Despite this small recovery, I was still having to spend 20 hours in bed a day. However this allowed me to be up and walking, gain some strength, and function within limits. The Doxycycline was not without its side effects, the first 6 weeks of each course was extremely challenging. Filled with worsening of all symptoms; more aches and pains, barely able to walk, increased malaise, migraines and headaches plaguing more than 30 days of those 6 weeks, and many more unrelenting symptoms. My improvement had plateaued after 9 months on the Doxy, and turned into a very slow decline during the months following. We have been offered no explanation for why this antibiotic worked, or why it stopped working, we were just over the moon that it improved my quality of life for that brief time. It could have possibly saved me from the downward spiral of deconditioning in my past severe state, and in turn, possibly saved me from getting so bad that my body would begin to shut down. For moderate to severe patients, living with ME is said to be like living with late-stage cancer, advanced stage AIDS, or congestive heart failure for decades.

I am back to 22-23 hours in bed, relying on my walker for aid to walk, and occasionally my wheelchair. I only leave the house for medical appointments spaced out many days apart. I am in constant pain, aches of joints, bones, muscles and nerves. Swamped with headaches and migraines, severe post exertional malaise, and a baseline of debilitating fatigue. I have developed various sleeping issues, various food intolerances, digestive issues and a struggle to maintain a comfortable body temperature on my own. Extreme sensitivity to light, sound, movement, smells and basically all stimulants that require my brain or body to process.

My impaired cognitive function makes processing all information difficult and slow. Reading, writing, talking and listening is very difficult, some days almost impossible. These are just a snippet of the myriad of symptoms this disease causes, amongst the various other neurological, cognitive, cardiac, cardiovascular, immunological, muscular, gastrointestinal, and many other symptoms.

As a part of my ME/CFS, I have MCS (multiple chemical sensitivity). This means that I can have adverse reactions to chemicals and smells, exacerbating all of my symptoms including headaches/migraines, brain fog, general aches and pains, fatigue etc. It is of the utmost importance to select building materials (especially interior) that are chemical free, zero or very low VOC, no glues, no formaldehyde, limited plastic etc.

This disease essentially makes you allergic to the world around you. The most relief you can get is from a dark, silent room with no stimulants whatsoever. This gives your body the best chance of switching off and focusing on running your internal systems for recovery. Of course this is also an unhealthy, unrealistic and sad way to live, and certainly is not a cure nor an effective treatment, only a way to reduce the risk of pushing your body beyond its limits into a “crash”.

It is typical for the condition to wax and wane from day to day, sometimes with no particular explanation, and other times due to overexertion. The effects of post exertional malaise (PEM) can cause “crashes” that last for hours, days, weeks, many months, or may even be permanent. Due to this, we need to be prepared for periods of even more severity, and will be relying on a living environment that can cater to those changing levels of condition.

For me, everyday is focused on surviving within my limits. It is a delicate dance of trying to read your body’s signals and understand what you can and can’t do from minute to minute. Get it wrong, and you pay for it.

It is likely I will have this disease for the rest of my life unless a cure is found. There will likely be times of wellness, hopefully remission, and possibly a lot of worsening too. It is unstable and unpredictable, which is something my family and I have to plan for.

We are hoping that this house will help reduce over stimulation of my system and in turn improve recovery, whilst helping me to save as much energy as possible within my daily living. This will improve my independence and quality of life. With these benefits, my family’s caring responsibilities will reduce, and thus creating a better quality of life for them as well.

SEPPELTSFIELD:

Although I very much miss my life and roots in Brunswick, Melbourne, it is not compatible with my illness needs. Seppeltsfield gives me a much less stimulated space, fresh air, open spaces, quiet, and most importantly – the chance to observe and be amongst nature. I have a very slow paced simple life now, and nature is what gives me the most joy and fulfillment.

Currently that involves watching the sunsets from our existing living area, or the stars at night through those same windows, the kangaroos passing through the field and vineyard on the South side, and birds both in the existing garden and in the same field on the South. These are the views and habits I would love to continue, especially on the days that I’m not well enough to get outside for very long.

I would like to expand my indoor garden, I think it’s very important to help improve the indoor air quality. It is a valued hobby, and a way to connect with nature in a more tactile way when being outside is not possible.

These things of course are a delicate balance, as I am extremely sensitive to light. Some days, especially when I have migraines, I have to wear sunglasses in my already dark bedroom with multiple layers of blinds and curtains closed. In my better periods, that sensitivity is not so extreme and I try to enjoy some light, so adaptability is key here.