Back to the Beginning

“It’s pretty hard to say where it began exactly, I have no defining moment at which I noticed I was sick. To be honest, looking back there are a number of times that I could place as being the “beginning” or rather, the first hint that something might be wrong. But of course, hindsight always works that way, it’s easy to see when you know what’s coming.”

I want to start by telling you why I’m here and why I’m even keeping this blog in the first place. I wasn’t always sick, in fact, in the big scheme of things, being chronically ill, or at least being aware I am chronically ill, has only made up a very small portion of my life so far. But when you’re in your early 20’s it doesn’t seem that way. It feels as though it’s been a life time, a life time that just keeps dragging on and on.

It’s pretty hard to say where it began exactly, I have no defining moment at which I noticed I was sick. To be honest, looking back there are a number of times that I could place as being the “beginning” or rather, the first hint that something might be wrong. But of course, hindsight always works that way, it’s easy to see when you know what’s coming.

The first hint may have been my decline in fitness, though that in itself was easy to ignore. I may have stopped running regularly but I was still a dancer and if anything I was dancing even more regularly than I had been. Never mind that I would be completely out of breath at even the thought of heading out for a jog.

Or maybe I should have known when my enthusiasm for school fell through the floor. I was an academic through and through and while I continued to maintain my grades I simply stopped caring. It was easy to blame the small town I grew up in, tell myself that I just needed a change, that going to University would fix everything. Everything was justifiable, and easily fixed with a little time.

Perhaps the true beginning was the time I became so ill with a “cold” that I had to take almost a full week off school. That was a bit of a foreign concept to me, I had a tendency to just push through most illnesses and go to school anyway, and being the academic that I was, I took pride in my high attendance and lack of sick days.

It was first brought to my attention though on a holiday to Australia, when I became increasingly dizzy and feint. Once again, there were plenty of external factors I could blame, the hotter climate (not to mention the heatwave at the time) and the high level of activity I was doing, making the most of my first time in a different country. I chose to blame the heat and dehydration, but it became harder to ignore when I returned home and did not return to normal.

Soon enough that first semester of University that I had been longing for was upon me. As predicted, my enthusiasm picked up and I was once again my old studious self. It was a short-lived feeling; before long I was struggling to focus. The harder I tried, the more my hands would shake, the more my head would throb and the more my frustration rose. It was worse than it had ever been and had finally reached a point that I could no longer push aside.

University doctors blamed everything under the sun, one blamed my high cholesterol and told me I should eat less take out, another prescribed me antidepressants, and a third told me I was making everything up. Every blood test came back perfect, according to the results I was a picture of health. Searching for an answer seemed impossible, and I started to doubt myself and believe that maybe it was all in my head.

BLUE - The colour of M.E/CFS Awareness
Blowing bubbles in the wind

And then I found someone who believed me.

Even so, it was a long time before I had a diagnosis, and even longer before I knew what that meant. I remember when I first read about neurological conditions online, I was searching my symptoms (because we all know that always goes well) and before long I was in my doctor’s office in tears, describing what I’d found and silently begging her to tell me it wasn’t neurological and that we’d find a cure. Far from the response I was hoping for, she instead confirmed my worst nightmare, she too had been considering that it could be a serious neurological illness.

For the days leading up to my hospital appointment my mind was restless, what if this illness really was real? I started to believe that maybe I really wasn’t crazy, maybe all those GP’s had been wrong and I really was ill. But then what? Would there be a cure?  Would there be a treatment? Maybe being crazy wasn’t so bad after all…

The appointment was a disaster. I left feeling dejected, and totally confused. How could a professional, a true neurological specialist, be so disconnected from reality. Even my friend who came with me for moral support couldn’t believe what we’d been told. Not only had the Neurologist completely denied that I was even ill, she’d done it in a way which left me feeling humiliated and stupid. The tests she carried out were no different from those my GP conducted regularly and her advice … give up study and spend a year in bed … I still had no idea what was wrong with me, and even less of an idea of what I should do next.

Giving up was the last thing I wanted to do and after once again meeting with my GP I was forced to make a difficult decision. University would have to wait. It was nearing the end of the semester and I couldn’t bring myself to give it up completely, I’d worked hard to get to where I was and I wasn’t about to throw that all away. Instead I arranged to meet with my lecturers and chose two papers which I could put on hold until the following year. Even so, I felt like I’d failed. Like I no longer deserved the Degree that I’d been working so hard for.

Looking back it was the best decision I could have made. Here I am now, the proud holder of a Bachelor’s Degree and one year into my first full time work position and it seems silly that I even considered pushing through and continuing as I was.

“But of course, hindsight always works that way, it’s easy to see when you know what’s coming.”

I guess what I’m trying to say is that it all seems like hell when you’re going through it, and you’re not sure if it will ever end, or if that “end” is even any better. But I’m here writing this because I want to tell you that it can and will get better. The internet can be a horrible place full of scepticism and negativity which (as it did in my case) can have a massive effect on how one reacts to and deals with a very new, very difficult and very scary situation.

I’m far from fully recovered, and perhaps I never will be, but I’m sure as hell living a much better life than the one I had a few years ago. And to be honest, I think that right now, that’s all that really matters.


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