I apologise for my absence, but I’m hoping you will take ten minutes out of your night to read my update.
I’ve been sitting here for weeks wondering what to write.
I have been dealing with grieving over the loss of my friend to suicide, and trying to put my puzzle pieces together. I have battled bad flareups, more testing and uncertainty. I have battled my Depression and Anxiety demons, and I have even managed to get a bit and actually enjoy the company of other humans my age.
When I first fell seriously ill in 2014, I watched my career crumble beneath my hands, my fat fading away to bones; I watched my hair become so dry that it fell out with the simplest touch, and I had a stomach that had lost its ability to break down food. I was left nauseated daily, dizzy daily, weakened, fatigued, insomnia ridden, depressed, confused, uncertain, terrified… the list goes on.
I think back to my thoughts then, and all I remember on a day-to-day basis was the certainty that I was going to die.
I knew it.
I could feel it.
I was just waiting for it to happen.
I was newly diagnosed with “mild” Gastroparesis that presented with “severe” symptoms.
I, nor my Specialists, had no control over my stomach.
Everything you name, we tried.
I had MULTIPLE MRIs, CTs, xrays, Colonscopies, Gastroscopies, Breath Testing, Emptying Scans, Bloodwork, a lumbar puncture, fasting tests, balance testing, hearing tests, faeces and urine samples, laparoscopies.
I had every home remedy, every detox supplement, every ‘green’ drink that supposedly changed the lives of so many. I tried EVERYTHING.
The condition ruled me.
It was killing me, and nobody could justify or manage it.
When you are sitting alone in your house, feeling exhausted from waking up every morning to battle your own body, you eventually accept that death is coming.
Each day is a struggle.
It isn’t like having one bad day.
A bad day in comparison to this is actually a great day.
The actual extent of the struggle is indescribable.
I wrote letters.
I wrote goodbye letters to everyone I could think of that filled my heart with warmth, because I knew that one day I wouldn’t wake up and I needed them to know that I tried as hard as I could.
I also remember sitting with my parents at the dining room table, crying, and telling them how much I wanted to die.
I saw how much devastation I unintentionally caused them. I remember my sister despising me because I was being given all of this attention. I remember my parents saying “we don’t know what do to do” repeatedly. They would be the first ones to question me, to take out their frustration on; but they would also be the first ones to defend me in public or to family and friends who chose to give their opinions.
I remember hearing them whisper about my frail body, and then look me in the eye with a halfhearted, sympathetic smile because they felt sorry for me and they didn’t know how to save me.
I remember sitting in waiting rooms with a vomit bag, and grown adults blatantly staring at me and whispering.
I remember how many friendships I lost due to their inability to accept me with this condition.
I remember the loneliness.
I was twenty-two.
It has been over two years since I was diagnosed with Shingles, and it has been just over a year since I was diagnosed with Gastroparesis and started this blog. It has taken me over a year of medication trials, hospital visits, endless tears, locking myself in my car and screaming until I have no voice, walking on the arm of someone else to stay upright, counting the hours until I fall asleep, memorising medications and test results, vomiting and eating, abdominal pain that left me in a ball on the floor… all of this to reach where I am now…
Where am I exactly?
Well, I’m not cured, and I’m not exactly making rapid progress.
I am somewhere in the middle.
I don’t know what that middle is called, but I hear that it could be something called Acceptance.
I am still attending appointments, but they have been cut down from daily, to fortnightly and some monthly.
I am still dizzy and unbalanced, but I’m somehow completing my daily exercise regime and I’m even jogging small distances independently now.
Yes, jogging!
I am still left bed or couch ridden on SOME days due to flareups, like today, but I can tolerate these “bad” days because I now know the difference.
And that’s the point that I want to make to you today…
If you are at the beginning of your health journey, or you have been sick for some years now, everything is going to be okay, I promise.
You have most likely faced the worst of your illness, and that was the beginning.
Believe it or not, you will grow accustomed to your body and the symptoms that accompany your medical condition. I’m not telling you that every day is easy, because it isn’t.
If you told me a year ago that I would still feel dizzy, but be able to jog around a park oval, I would have laughed in your face.
If you told me a year ago that I would have 7 days of good health in a row, I would shake my head in disbelief.
If you told me a year ago that I would be able to eat three meals a day, on most days, I would not believe you for a second.
If you sat me down a year ago and prepared me for all of the things that I would have to endure, and actually come out of it feeling relatively “well”, I would have burst into tears with absolute fear.
I look back on how underweight I was, how afraid and ill I was, and I see that I HAVE made progress, and you will too.
As time goes on, medicine is advancing and your illness is becoming more common. That means that there are more people in YOUR situation, feeling what you feel, seeing the Specialists that you see and they will most likely be trying everything they can to feel better.
I went through my journey expecting to make a full recovery. I could never accept the fact that life would be harder for me; I just thought it would be impossible and I had to make a full recovery in order to LIVE.
No, no, no.
I had it all wrong.
So, here I am speaking from experience.
I am here to tell you that you will most likely not make a full recovery, and you just have to accept that… but I want you to know that there is hope that you will make PROGRESS. There is hope that things will get better, that you will find the right code to your puzzle and be able to go to sleep with a smile. Things will get better, but it takes time.
I promise you will come out stronger at the end of it. You will be able to brave the bad patches with more strength than you’ve ever had before.
I also wanted to share a photo with you.
I am not looking for negative comments about my weight, or the fact that I am wearing minimal clothing. I am sharing a private piece of my life with you, to make a point.
I took the prephoto when I first fell ill. I was at a shocking weight of 33kg (72pounds) and had bones protruding from my ribs, my shoulder blades, my hip bones, cheekbones and knee caps. I was going through my day sipping on water and not eating. I had at least four nose bleeds a week, hair falling out and skin dry and scaly. People would stare at me and say “you look sickly thin”.
I currently weigh 47g (103pounds) and I tried to take an identically placed photo to show you.
I now aim for two to three meals a day (unless the nausea is really bad). If I do have a bad day I try to at least drink one smoothie. My hair has grown, and is strong enough to have been bleached about ten times already. I have fewer days of complete brain fog. My skin unfortunately still fluctuates with my stomach symptoms, but I am at a healthy weight. I have gone from being an Australian Size 4 (which isn’t actually made so I had to buy kids clothes and jumpers) to an Australian Size 8. I have gone from not fitting in my clothes, to being to big for them and having to upsize.
I have actually been referred to as “fat” now, and do you know what I do? I laugh.
Yes, I have a round stomach now, I have lovehandles, I have curves.
If this is fat, then I’ll wear it with pride, because I would rather be this weight and be able to eat, than be underweight and living off of sips of water.
I still feel “sick”, but nowhere near close to the sickening feeling I had a year ago.
I still have multiple severe symptom days and feel like life isn’t worth it, but I reassure myself that it will pass. It WILL pass.
In regards to my own journey, I still have a long way to go.
I would like my flareups to decrease to 1-2 days a week as opposed to an entire week sick and then one week not sick. I would like to be able to tolerate the dizziness better too.
I finally have a good team around me, supporting me, and some incredibly understanding family and friends.
I have been spending my spare time educating others through Facebook messenger and Instagram. I want to help others so they do not feel as alone as I did in the beginning of my journey.
Everything takes time.
So, please, if you are having a rough time, hang in there. Hold on.
Keep researching, keep trying new things, keep educating others.
I know that one day you will also look back with pride, and you will see how far you have actually come.
C xo
Indisposed and Undiagnosed 