It’s been a while since I’ve logged onto my blog.
These are the faces of my illness – one selfie from every year since I’ve been unwell – it’s a given we know that I have an invisible illness. It’s amazing that a smile and makeup hides so much. The other pics are some of the struggles from the last few years. The days I try to document to get people to see I’m not okay. Really. I AM NOT OKAY. Not today, not tomorrow, not ever, not even right now. In fact I feel pretty shitty.
Since last year my life has had many high and low points and it scares me reflecting at the pain that I have endured, the struggles that I faced, the depression that almost swallowed me whole.
Within a year, I am now employed, have money, I’m engaged, I graduated from uni and am now doing my Master of Arts, Literature and Creative Writing, I celebrated my engagement with my closest friends and family. I have met some amazing people; I’m planning a wedding and about to move into a granny flat at home with my fiancé. To say that I’m in a better position than I’ve been in a long time is certainly correct, but this year has been very overwhelming.
With the constant disruption of routine, I’m beyond exhausted – I’m struggling to keep up – I’m starting to think that I am doing too much. But I can’t stop. I keep thinking of the girl I was before this illness struck and how this day is bittersweet – a self that died long ago gets recognised today.
Today is an important day, International ME/CFS day – another year has come and gone – new lessons learnt. I watched live videos from the protests around Australia regarding our illness and the fight for recognition in the medical community and I commend those who protested and to the millions who were physically ‘missing’ – you were still represented. It’s been nearly six years now since I entered this hell. I’m not going to sugar coat this illness today – I know that I need to remain positive because an unhealthy mindset doesn’t help me get better. But honestly, the ugly parts of this illness have to be documented for people to understand this illness.
We fight this illness 365 days a year – but we get one day of international recognition for such an ugly battle.
I am 1 in 250,000 in Australia who fight this illness. I am 1 in 17 million in the world with this illness.
I am a daughter, sister, fiancé, cousin, daughter in law, friend, best friend, niece, colleague, granddaughter, great granddaughter, sister in law, fur mother, stepdaughter
I am an online friend, advocate, singer, writer, student, patient, employee, customer, stranger
I never used to struggle with simple tasks; standing, walking, staying up late, dancing, exercising, socialising.
I have seen grief, pain, suffering, depression, physical changes to the body, loss of relationships, new symptoms, debilitating symptoms.
Within the harshness of this illness, I have found my voice, my passions, my strengths.
When you are forced to battle something, you learn to survive – you learn to live.
There have been many moments where I have started to lose hope – now I know that there is no cure for my illness, but there is such a thing as being in remission and getting stronger than you were before. I know that I’m stronger than I used to be. Instead of spending days in bed, barely conscious, I am now working 3 days a week and doing uni 2 days a week – immersed with assignments, appointments, social outings, sleeping, exercising, singing lessons.
The last few weeks have been tough – I have started giving up – yes this is not what many of you want to hear. I’ve fallen in this state of despair that maybe I just need a break from trying so hard to be perfect and getting myself better. I need time to figure out who I want to be – where I want my body to be. At the moment it’s suffering because I’m not taking care of myself. I’m in a vicious cycle. I’m scared. But there is a tiny but loud voice saying I’ve been here before and emerged even stronger. I am not a weak person – I’ve been tested don’t get me wrong – but I’m still here.
I get nostalgic for days the days that were simple – but so many of those days were filled with longing for all the things I have now – a car, money, a job, fiancé. Sometimes going back to your past can be more harmful than helpful. I stepped back in time recently and realised that I can’t hold onto an old self who doesn’t exist anymore.
I’m in tears now – I do wish I could live one more day as a sixteen-year-old – to wake up without struggle, walking effortlessly, go to a party, dance and have fun without any consequences.
So to sum up – I want to give up – but here I am fighting to hold on a little longer.
Love Felicity. F
These are the faces of my illness – one selfie from every year since I’ve been unwell – it’s a given we know that I have an invisible illness. It’s amazing that a smile and makeup hides so much. The other pics are some of the struggles from the last few years. The days I try to document to get people to see I’m not okay. Really. I AM NOT OKAY. Not today, not tomorrow, not ever, not even right now. In fact I feel pretty shitty.
Since last year my life has had many high and low points and it scares me reflecting at the pain that I have endured, the struggles that I faced, the depression that almost swallowed me whole.
Within a year, I am now employed, have money, I’m engaged, I graduated from uni and am now doing my Master of Arts, Literature and Creative Writing, I celebrated my engagement with my closest friends and family. I have met some amazing people; I’m planning a wedding and about to move into a granny flat at home with my fiancé. To say that I’m in a better position than I’ve been in a long time is certainly correct, but this year has been very overwhelming.
With the constant disruption of routine, I’m beyond exhausted – I’m struggling to keep up – I’m starting to think that I am doing too much. But I can’t stop. I keep thinking of the girl I was before this illness struck and how this day is bittersweet – a self that died long ago gets recognised today.
Today is an important day, International ME/CFS day – another year has come and gone – new lessons learnt. I watched live videos from the protests around Australia regarding our illness and the fight for recognition in the medical community and I commend those who protested and to the millions who were physically ‘missing’ – you were still represented. It’s been nearly six years now since I entered this hell. I’m not going to sugar coat this illness today – I know that I need to remain positive because an unhealthy mindset doesn’t help me get better. But honestly, the ugly parts of this illness have to be documented for people to understand this illness.
We fight this illness 365 days a year – but we get one day of international recognition for such an ugly battle.
I am 1 in 250,000 in Australia who fight this illness. I am 1 in 17 million in the world with this illness.
I am a daughter, sister, fiancé, cousin, daughter in law, friend, best friend, niece, colleague, granddaughter, great granddaughter, sister in law, fur mother, stepdaughter
I am an online friend, advocate, singer, writer, student, patient, employee, customer, stranger
I never used to struggle with simple tasks; standing, walking, staying up late, dancing, exercising, socialising.
I have seen grief, pain, suffering, depression, physical changes to the body, loss of relationships, new symptoms, debilitating symptoms.
Within the harshness of this illness, I have found my voice, my passions, my strengths.
When you are forced to battle something, you learn to survive – you learn to live.
There have been many moments where I have started to lose hope – now I know that there is no cure for my illness, but there is such a thing as being in remission and getting stronger than you were before. I know that I’m stronger than I used to be. Instead of spending days in bed, barely conscious, I am now working 3 days a week and doing uni 2 days a week – immersed with assignments, appointments, social outings, sleeping, exercising, singing lessons.
The last few weeks have been tough – I have started giving up – yes this is not what many of you want to hear. I’ve fallen in this state of despair that maybe I just need a break from trying so hard to be perfect and getting myself better. I need time to figure out who I want to be – where I want my body to be. At the moment it’s suffering because I’m not taking care of myself. I’m in a vicious cycle. I’m scared. But there is a tiny but loud voice saying I’ve been here before and emerged even stronger. I am not a weak person – I’ve been tested don’t get me wrong – but I’m still here.
I get nostalgic for days the days that were simple – but so many of those days were filled with longing for all the things I have now – a car, money, a job, fiancé. Sometimes going back to your past can be more harmful than helpful. I stepped back in time recently and realised that I can’t hold onto an old self who doesn’t exist anymore.
I’m in tears now – I do wish I could live one more day as a sixteen-year-old – to wake up without struggle, walking effortlessly, go to a party, dance and have fun without any consequences.
So to sum up – I want to give up – but here I am fighting to hold on a little longer.
Love Felicity. F