Hi, welcome to my blog.
I’m in my twenties. I’m a foodie. I love nature, travelling and my cat Fleurs. And for the past 8 years, I have been living with a neuro-immune illness known as Myalgic Encephalomyelitis (or ME for short.) I had always associated writing with grades in school, then later university and never imagined that one day I would start writing poetry, like my grandfather, rather than studying it. Most of my poems stem from my illness, but others are about life, love, heartbreak and gratitude. I created this blog to share what I write and I hope you find some meaning, inspiration or hope in what you read here.
Thank you for stopping by,
My (condensed) story
My experience with dealing with doctors and specialists for Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome [CFS]) has been a waste of money and time. At 15 years of age, I sought help after not recovering from a virus and went from an energetic high achieving student to slowly having to give up on everything I loved – one by one. I’ve been told that ‘everything is normal (blood tests)’, or that with rest, less stress and a good diet – I’ll recover. I’ve been told I should see a psychiatrist, to stick with Graded Exercise Therapy and Cognitive Based Therapy – both suggestions an obvious indicator that those prescribing this form of ‘treatment’ are deeply lacking knowledge and compassion to what their patients are telling them. Nobody wants to be sick, missing out on their life – schooling, studying, working, playing sport, socialising or travelling.
Early on, I realised that aside from there not being a cure for this disease, the ‘experts’ who are meant to help us miserably failed. My GP did not warn me about how my body would deteriorate; how much this illness would change my life. How I would lose the ability to run, read, write and speak; that this illness would silence me (quite literally not having the energy to talk.) I took my health into my own hands, because I was determined to be the girl I once was (full of energy) and I was sick of medical professionals telling me to ‘eat well’(something I was already doing), reduce my stress or to take medication that made me feel worse. Despite finding a handful of health professionals such as an osteopath and naturopath who improve my health, it is still no cure.
I’ve had to learn to accept and navigate living a life I never expected to find myself in. A stark contrast to what I had planned.
Everyday tasks that others take for granted such as showering can sometimes bring me to my knees and I will spend the rest of the day recovering from this. I’ve had to learn to accept and navigate living a life I never expected to find myself in. A stark contrast to what I had planned. If I was still well, this would be my final year studying architecture. I have to find meaning in days where the ceiling is my view and keep in mind that there have been periods where I have recovered to 80% (although short-lived.) I have had periods where my health has significantly improved, and in this joy and ecstasy – like learning to ride your bike for the first time – I overdo it making up for lost time. There is a limit to which I can function and when I exceed this it’s like a switch is flicked and my body shuts down. Any exertion, mental or physical can set me back weeks or months where I am housebound. I cannot study or work, despite desperately wanting to. In the meantime, I manage this illness as best I can with gentle movement ranging from seeing an osteopath, rebounding to treading water in a heated pool with the elderly. I eat a plant-based diet. Try to meditate daily, but for those who struggle with getting their serving of greens a day, I really struggle with allocating time to ‘be present.’ We so often focus on the physical aspects of recovery, but nurturing our mental health is just as (if not more) important – and mindfulness is an invaluable tool – and you really only need 10 minutes a day.
With more discussion, comes knowledge and understanding that this illness is devastating on every level. May 12 is International ME Awareness Day (I have uploaded the poem I shared this year) and it is estimated that worldwide 17 million people are afflicted. My hope is that the same regard, respect and treatment is given to everyone suffering from this illness as would be given to cancer patients for example.
There has been a lot of loss with this illness, but writing, particularly poetry, has been an unexpected gain – it’s been a gift and helps me make sense of what has happened and is happening. It has brought meaning back into my life, and I find serenity when I’m outside capturing snapshots of nature’s beauty that accompany my words.