The First Day of the Rest of my Life

After 656 days, 15 doctors, $15,000+, a ridiculous number of tests and so many tears, I finally have a partial explanation for what has been happening to my body all this time. I am no longer undiagnosed and I have the start of what is looking to be a long list of conditions.

I walked into the doctor’s office lost, confused, frustrated and almost at my wits end but I left with clarity, validation and hope for a new beginning. In just 30 short minutes, my long search finally paid off. A row of printed out results spread out over his desk, and the words “these tests were positive” changed my life forever.

I have Postural Orthostatic Tachycardia Syndrome, Myalgic Encephalomyelitis, Chronic Systemic Inflammation Disease and Small Intestine Bacterial Overgrowth. My doctor is still investigating for more and he has started me on a gentle treatment plan for a few of these as he doesn’t want to overload my body with medication all at once.

Just like that, my whole life and identity has changed. While I am still mostly undiagnosed still, I have some understanding as to why my body is the way it is and I really can’t tell you how this feels because I am still not sure. I know this news is incredible and I have waited so long for them but it just feels really surreal. It’s been such a build up to hearing these things, I don’t know how I expected to feel.

I guess I saw answers as my end game and never really thought much about life after a diagnosis. At the end of the day I am just as sick as I was before I knew what was wrong and nothing has really changed but at least I can stop wasting my energy on begging doctors to listen to me and start focusing on treating and managing these conditions as well as trying to get to the bottom of everything else.

I’ve been a mix bag of emotions since finding out; happy tears, sad tears, scared tears, relief tears – basically just a lot of tears in between periods of complete numbness. I know this is a great start and I am so thankful that I found a doctor who took me seriously and genuinely wanted to help me. I don’t know how much longer I could have coped with ignorant, dismissive doctors who thought I was either insane or didn’t care enough to look beyond the obvious.

I am struggling to reflect on this at the moment because it really is taking some time to sink in so I will keep you updated when I can.

This is the start of the rest of my life. The start of a new journey and the first step towards feeling as best as I can. I am so nervous but excited to turn over a new leaf in my journey and start my life as a diagnosed patient.

Please share your diagnosis stories with me: how you felt, how long it took to sink in etc.

And to all of you who are still searching, please don’t give up. It just takes one doctor to help you and you will find them one day. My heart will always go out to you and I will never forget how hard it was to float in medical limbo, lost and confused. I will always advocate and speak for you. I will never take my time undiagnosed for granted – it both destroyed and rebuilt me. Stay strong, you can get through this.

All my love,

Ash.

A Letter To The Man Who Loves Me Despite My Chronic Illness

When I met you, you were a little lost. You didn’t know what you wanted to do or where you wanted to go. I, however, had it all worked out; the city move, the study, the career. The more I got to know you the more I realised that I wanted you above all other things. Continue reading

Why I Blog

It was once hinted that my blogs were a form of ‘attention seeking’ by someone close to me and it really hurt me. I then began to think about why the hell I was actually doing it and dedicating most of my time to it. I was determined to prove to myself that my blogs were not me ‘crying for help’ or ‘attention seeking’ but I came to the conclusion that as a matter of fact I do want attention for my blogs but not for selfish reasons at all. Continue reading

Dancing with Words – My Illness as my Dance Partner.

As a dancer, I’ve always expressed my emotions through dance. I would tell a story of my own emotional battles through either my improvisation or my choreography. Lately I have been really down about not being able to physically express my current struggles through dance. I sometimes hear the perfect song and envision myself telling my story through movements and flow. When the realisation kicks in that I most likely will never be able to express myself with dance again, it brings me to tears every time. Continue reading

What No Diagnosis Really Means

Never in my life did it occur to me that one day I would wake up sick and (potentially) never get better. I often brush over just how scary the unknown really is. When I let myself think about it, the truth is I’m shitting myself. I have no diagnosis, which sounds like no big deal right? Wrong. I can honestly say, living with an undiagnosed illness is one of the hardest things I will ever do. Continue reading

A Deeper Insight into my Situation

The doctor once asked me to shade in the affected areas on a piece of paper with an outline of a person on it. A simple task if I were seeing him for an injured ankle or back pain. For my situation this task was quite difficult. Did affected mean just the numbness? What about the pain? The weakness? The terrible cognitive processes? I could have used every colour of the rainbow (pun intended) to demonstrate the different effects on different areas. Continue reading

My New Normal

I can’t remember the last time I felt ‘normal’ – before all these symptoms started five months ago. I know they haven’t always been here but I honestly can’t remember what it felt like before. As much as I try to remember how it felt to be strong, active and awake, I just can’t do it. The thought of being those things feels so foreign to me – as if they were a lifetime ago. It scares me because it’s only been five months since this started. If I’m struggling to remember normal now – what the hell is it going to be like in five years’ time? Continue reading