Wednesday, October 30, 2013

When the wall came down

It was a Thursday morning in October. A crisp sunny spring day in the small coastal town I lived in. The stunning sea views from my home were as breath taking as ever. My bags were packed and ready to leave the following day for a week long break to the mountains with my husband. I was 7 months pregnant with my first baby.

I had so many reasons to be excited.
But I wasn't.

The pain seemed to cloud everything else. As much as I tried to resist, it seemed to drain all the colour from my world. I felt as though the symptoms of UC had placed an invisible screen between me and the rest of the world. Even though I was often around others, I felt so isolated. The more I fought it, the more UC seemed to consume my body and my thoughts.

And when it wasn't, I was putting up a façade with my friends and family, pretending like I was completely fine.

But something happened that fateful Thursday morning. I woke up from an exhausting night of running to the loo and trying to make it through the excruciating pain and I realised that my façade was wearing thin. The cracks were beginning to show. I could not go on.

I called my husband over and in an attempt to explain how I was feeling, I broke down in tears. He was bewildered. He could not truly grasp the situation. And as much as I wanted him to, I now realise that there's no way he could have understood.

For the past two months, I had woken every hour on the hour to run to the loo. I had experienced periodic episodes of pain that went beyond any pain I had experienced thus far. And throughout it all, I had not even woken him up once during any of it. My nights were terrifying - I would try to delay the inevitable by stalling my bedtime - yet I had not shared the full truth of this with him.

So when he saw me break down that morning, it probably did not cause him as much alarm as it should have. He could have even put it down to pregnancy hormones!
He suggested a visit to our local GP who was also a close family friend.

I tried my best to pull myself together whilst I drove myself to Dr S. I tried once again to put on the mask that I had been wearing all along, yet I was painfully aware that I could not hold onto it much longer. The prospect of this terrified me. It was almost as though if those around me understood the reality of my situation, I would have to face up to it as well. And I wasn't sure if I had enough courage to do that.

Walking into the Doctor's office, I longed for him to tell me what I needed to hear. I had kept a diary over the past of couple of months that detailed my diet, BM's and bleeding as well as pain levels. Dr S had been the one to suggest this diary to me when I first shared that I would be opting for homeopathic treatment over traditional medicine. I handed this diary of shame or diary of pain - this is what I had started to call it in my head. And that's the thing about UC isn't it: as much as you know that it's not really something you have any control over, it makes you feel ashamed. It's a yucky icky disease - faeces and blood....who wants to talk about those things?? I didn't share my diagnosis with very many and when questioned about my symptoms, I usually told the person to google the disease!

I didn't like the look on Dr S's face. My husband and I had been joining him and his wife (who had become a good fried of mine) and 4 kids for weekly meals for almost 3 years now. I understood from his expression that he was not happy about what he was seeing. I could feel my mask slipping as I swallowed back tears. He immediately rang my specialist, Dr M. He told Dr M about the details in my diary and asked for the results from my colonoscopy to be sent to his office.

Looking back, I realise that  that visit to Dr S was a turning point for me. Until that moment, I was happy to delude myself that the UC was temporary; that it was related only to the pregnancy; that I could control through my diet; that I didn't need any medical intervention and that the homeopathic treatment and sheer force of will would see me through.

Dr S's frankness that day shattered all these misconceptions. I could feel my hopes shattering all around me as I heard his words: the UC was permanent he said. It was not just a small part of my colon that was affected, it was all of it he explained.  Dr S gently reiterated that homeopathic treatment would not be sufficient and the symptoms would only get worse if left untreated.

I felt like the air had been knocked out of me. With the destruction of my carefully constructed wall of self-deception, I felt like I was now left completely vulnerable to the fears that had threatened to swallow me up from the day I went in for my colonoscopy. My devastation unleashed itself and in Dr S's office I finally lost control. Months of tears and pain came flooding out and this time I could not contain it. I was aware of other patients staring at me but my pain was all I could focus on. In that moment I knew that I would have to accept this diagnosis as part of my life and that stirred in me a depth of grief that I had never known before.

The receptionist gently ushered me into Dr S's home which was adjoining the surgery. I found his wife, my friend, inside. Z's face was etched with concern. I will always be grateful for her compassion that day. Had I gotten back into my car in that state, I'm not sure I would have made it through the next few days. I'm not sure I would have made it home at all.

I was still inconsolable and although she didn't really comprehend the extent of what I was feeling, Z tried her best to placate me. She tried to make me focus on Dr M's advice which was to start a high dose of medication immediately and on the impending arrival of my first baby. I nodded in agreement as she reminded me that the important thing was that the baby was doing so well. At some point in the next hour I eventually stopped crying. My heart was still heavy with fear and a sense of dread that I couldn't quite understand, but I gathered myself up and returned home.

The next day held the promise of a beautiful holiday to the picturesque Drakensburg mountains with my loving husband. All I had to do was make it through another night....

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