Health Update // 10 Years of Chronic Illness
2019 means that in April I will have lived with chronic illness for 10 years.
What an emotional rollercoaster every time I think about that number. I’ll be driving to work, remember, and want to burst into tears at the reality.
10 years of bone-aching fatigue, unrefreshing sleep, weak limbs, low standing blood pressure, insomnia, irritable bowel, bloating, loose joints, fevers, brain fog, difficulty concentrating, memory loss, blurred vision, heart palpitations, shortness of breath, anxiety, food sensitivities, chemical sensitivities, medication sensitivities, weight gain, and definitely many more symptoms. If there is a function in the body, mine was altered in some way.
If you don’t know me, you might not know I’ve been disabled for large chunks of my adult life and housebound at different times. I’ve varied from 50% decreased function to what they call “very severe”, where I was mostly bedbound and dependent on a carer. I have been unable to work or drive since I was 17, and I got my degree by getting medical exemptions from mandatory attendance at university. I came really close to not graduating because I missed applying for exemption from just one mandatory class, but thankfully my tutor understood when I explained I’d medi’ed the entire semester and had just missed a Doctor’s note for one hour.
In 2016 I tried volunteering for only six hours a week and had to quit pretty quickly, which is why I started freelancing. It was my only option, to work from my own bed. I spent most of 2016 and 2017 struggling to function even on a basic level.
But look at me now, two years on!
Today I live abroad, work in my dream job while still running my side biz, I’ve entered and maintained a two-year relationship, and I even got my driver’s licence after it had been too unsafe for almost nine years due to the neurological issues I was dealing with.
I was already vegan, but in the past two years I’ve quit birth control, antidepressants, alcohol, gluten, oil and other refined foods. Basically, I try to only put things in my body that human bodies are designed for and limit inflammation in my blood and internal organs. I think of my chronic illness as the canary in the coal mine, because as soon as I partake in any unhealthy activity my symptoms flare in warning. I had no choice but to dive into nutritional science and live as close to a perfect lifestyle as I could.
Most people can see visible evidence of my remission because my family and oldest friends have commented on the fact I’ve dropped about four dress sizes. From the outside, you can see something is definitely different about me.
But from the inside? I am resolving my lifelong issues with insomnia, finally finding sleep refreshing and sleeping for less hours a night, tolerating moderate amounts of exercise without consequence, enjoying better digestion and regaining mental clarity and calmness. As long as I spend a good portion of my downtime horizontal, I can largely move through the world like a healthy person without anyone suspecting a thing.
I’ve rejoined the world of the vertical.
Now that I live in Micronesia, heat is a considered factor to my daily quality of life, but it doesn’t actually get as hot as a Melbourne summer. The difference is homes aren’t built efficiently so I live in a hotbox apartment with extremely expensive electricity to run inefficient airconditioning, so I can’t cool my home naturally or economically. I have to be strategic about when I use the aircon, but realistic that sometimes I need it and it is a health expense. When I get overheated, the inflammation causes a dramatic drop in my mood and energy so I relapse into being unable to wake up or get out of bed. But by paying attention to my needs and drinking the minimum of 2L of water a day, I can manage this health risk without considerable impact.
I still battle chronic acne, debilitating PMS, low blood pressure, dodgy joints, irritable bowel syndrome, panic attacks and all sorts of ailments including a suspected torn cartilage so I by no means think of myself as “cured”. But from where I’ve been to where I am now, I couldn’t possibly take being able-bodied for granted. I have two legs and I can finally use them to carry me through oceans and over mountains.
What changes have I made? Let’s reflect on what I already mentioned.
Accepting my reality & no longer lying about my symptoms to others
Listening to my body from day-to-day and designing my lifestyle around the ebbs & flows of my energy
Consistent, vigorous hard work tackling my internal blocks and fixing my mindset
Quitting daily medications
(Not advocating anyone their drop mental health meds, but strongly advocating that all people drop hormonal birth control right away - the science is firmly in on that topic)
Quitting alcohol & the entire lifestyle that comes with it
Limiting refined foods, specifically wheat & oil
Daily B12, D3, calcium, magnesium & milk thistle supplements
(The last three were prescribed by a naturopath as the outcome of a hair mineral analysis)
1 tablespoon of barley grass powder per day
3 cups of veggies, 1.5 cups of beans, 1.5 cups of whole grains & 3 tablespoons of seeds or nuts per day
Trying to incorporate anti-inflammatory foods into my diet whenever I have access to ingredients like turmeric, blueberries, cherries, green tea, etc.
There is no known diagnostic test or treatment for my problems, but I have many suspicions about the causes and what I need to do — and I’m working on it. I am focusing on cleansing my liver and rebalancing my hormones every day of my life. I never get a break from worrying about it, and it’s where I channel all my spending money.
Will my body ever be completely “normal” and able to ‘lax on my self-care? I can’t see that happening. But with vigilance, I seem to be living a pretty normal life. I’m loved, I’m lucky, and I have very little to complain about.