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....

Wednesday, October 23, 2013

What happened next

I mentioned in my previous post that some time after my last post in 2009, I was hospitalised.

In my 20th week of pregnancy, a colonoscopy confirmed my fears. I had UC and it was severe. The gastroenterologist prescribed 4800mg Asacol a day. That was 12 pills! Everyday! Being the kind of person who loathed to take medication (even a small dose of paracetamol was not taken lightly with me), I chose to completely ignore his advice.

Now it may appear that my decision was irresponsible. But there are two things you have to consider here:

1. I was 20 weeks pregnant with my first child and was terrified that the medication would have adverse effects on my baby. Although I had the go ahead from atleast 4 medical specialists, I still worried that if any harm came to my unborn child I would forever blame myself.

2. I had no idea how bad UC could actually get.

So off I went full of hope and naivety to consult with a Homeopath. She assured me that she had treated others with the very same condition with excellent results. Words like 'gluten-free diet' and 'cured' were used.
I believed her.  I wanted to believe her.
I needed to believe her.

In the two months that followed, I religiously consumed the costly health supplements and was rigid about following the gluten free plan. Yet, the UC didn't improve. In fact, the symptoms only became worse. I would spend the major part of my day in the loo and most of the night as well. The stabbing pain would wake me up at night. Some nights I was convinced that I would pass out from the pain.

Sometime around my 30th week of pregnancy I found myself physically and emotionally depleted. It was the day before my husband and I were due to leave for our last holiday before baby's arrival. We had been planning it for months and were eagerly anticipating it.

But I found myself completely exhausted. I had not slept more than hour at a time in weeks. I could not get through a meal without running to the loo atleast once. Pain was my constant companion. When I wasn't doubled over and breathing myself through pain, I was living in the fear of it gripping me at any second.

Writing about it now causes me to tear. I realise this is why I have avoided writing about it for so long. It was the most difficult period in my life. Looking back, I realise that I unwittingly made it more difficult for myself by not being honest about what I was going through with my loved ones. Not even my husband (who has always been my best friend) was privy to how bad it really was. I glazed over the details, made light of the pain. So what ensued over the next few days caught him, as well as the rest of our family, completely off-guard.

The return

So here I am.
At long last.

It has taken me almost 4 years to make another post.
I never made a conscious decision to give up on this blog. There were many reasons why I didn't post an entry: the first one was being hospitalised shortly after my last post. Then of course motherhood claimed my existence entirely with the birth of my baby boy in January 2010. Once I had settled into my new role as a mother, I fully intended to come back and post on the experience of the remainder of my pregnancy. UC stayed with me. And therein lay my dilemma. I had secretly hoped that because it was something that had found me in my pregnancy, it would miraculously disappear once my pregnancy ended. But it didn't.

The period of my life during which I started this blog was a dark one. It was supposed to be an amazing time as it was my first pregnancy - and there were beautiful moments. But I was new to the world of UC and I struggled with the hold it had over me. I struggled with accepting it as part of my new identity as I was afraid it would overpower my identity as it had my life. I was very much in denial about it and the terrible twosome shame and fear kept me from sharing my true experiences with those closest to me. Surely if I pretended that everything was alright then it would be, right?

The more I tried to ignore the effects on UC on my body and life, the more it tightened its grip on me. In a way this blog was the closest I got to being completely honest about it.

So here I am, 4 years later. I am a mother to two beautiful boys. I am healthy (most of the time). I have faced many demons and I am pretty sure there are more to face when the time is right. UC has not claimed my identity but I am working on not feeling ashamed and inadequate because of it. I accept it is a part of my life but that doesn't mean I have given up on finding ways to deal with it better. I still believe that I may one day be one of the 10 percent that is cured. And I will always pray for a cure.

I remember clearly wondering 4 years ago...UC - what did I need TO SEE? I racked my brains trying to figure out what, if any, message this disease held for me. I was at a loss for answers.

Over these years, some answers have revealed themselves to me. I do see many things I couldn't back then - the way I chose to see myself and the relationships around me.

So here I am. Back again. I hope to over the next posts to share the rest of my pregnancy experience(s) and the effect that UC had on them.

Till next time....

Tuesday, October 20, 2009

Love Heals

Yesterday can be categorised as a "bad day". I counted a total of 20 BM's over a 24-hour period - more than half of these were bloody. Officially, my worst day in over 4 weeks according to my UC diary.

Yet, my experience of the day was not unbearable. The pain came and went consistenly throughout the day and although exhaustion & weakness followed close on its heels, it did not overcome me with self-pity or depression as I suspected it would.

Because yesterday, my husband looked at me and asked me with patient sincerity:
"What can I do to make you feel better?"
And so, instead of shrugging him off as I usually do, I answered him:
I told him that he could try to make me laugh; that he could sit close to me on the couch whilst we watched tv; that he could hold me in the middle of the day; that he could hold my hand whilst I slept.
That he could be by my side when I needed him to be.
And so this is what he did; in a way that only he could.

My UC diary argues that it was indeed a "bad day". My body confirms this with the extreme exhaustion that I can't seem to shake off even today.
But because of the love and peace I feel inside of me, my heart begs to differ.

Although my mind and body disputes this, my heart tells me that it was one of my best days in a long time.


They say that motherhood is a sacrifice.

I wasn't prepared for the sacrifices that I've had to make during this pregnancy though.

Foregoing the drugs prescribed by the sprecialist used to manage the illness has been the biggest one. Although they assure me that it will not harm the baby, I know that everything crosses the placenta. So I had to rely exclusively on the herbal remedies which are a long-term solution that provide little relief on a day-to-day basis.

During the diagnostic procedure (colonoscopy) at the hospital, pain-relief was not an option that I could take advantage of. The pain was astounding.

Some days go by smoothly. I do my chores, cook the food, read books, run errands, attend social events. Apart from sporadic waves of pain and quick dashes to the loo, I function fairly normally. At times I feel completely normal; cured and restored to my former health I revel in the bursts of energy.

A few minutes or hours later and inevitably I am confronted by the inescapable truth.

I know I should relish those good periods. I usually do appreciate them and they help me get through the pain when it does come. But the knowledge of the difficult periods lurking around the corner often mar my enjoyment of the the moments of respite.

This disease is my unwanted night-caller. It forces its way under my duvet and makes me writhe in unbearable pain. I toss and turn trying to delay the inevitable. But the UC eventually tears me away from the semi-comfort of my bed and wedges itself firmly between me and my sleep. I record every awakening and its events (BM, strength of pain, bleeding, etc) in my UC diary. The night seems never ending.
I often lie awake wondering why it's so much worse at night. I mentally review my diet for the day, the events, etc. The still night brings no answers.

Morning dawns eventually and I fall into short bursts of exhausted slumber.

Thursday, October 15, 2009

Hope & helplessness

I haven't enjoyed pregnancy.
I said it.

Don't get me wrong - I haven't been averse to the changes in my body and self perception.
That part has been somewhat wondorous.
Every morning I muse at the feminine curve of my growing belly. I feel strong and blessed. Feeling my little miracle hiccup and kick in response to my voice has been the most amazing experience of my quarter-century life. Daily, I am mesmerised and delighted by the development of my familiar stranger. I still can't quite fathom how 'normal' it is that I have another human being growing, living, sustained inside of me.

Before falling pregnant, my body and I were a good team. I tried my best to take care of it and in return it allowed me to live at the high-energy pace that had become part of my personality.
When I realised I was pregnant, I was elated and became even more committed to nourishing my body as best I could. Good nutrition is of course an intergral part of optimal foetal development. My baby had to have a running start. And of course, all the pregnancy guides advocate the benefits of exercise during pregnancy.

Eight weeks into pregnancy, my body, which I thought I knew so well, turned on me. Severe bloody diahorrea and excruciating abdominal cramps left me exhausted and confused. My pregnancy had brought to surface the dormant fault that lay embedded within me. I was diagnosed with an auto-immune disease that I had never before heard of, Ulcerative Colitis.
My body was attacking itself....

It's ironic that the time in my life that I'm supposed to be serene and feel joyous is now shadowed by the dread of this disease.
It's strange to have this love-hate relationship with my belly - it both nurtures my baby but lends a home to this sickness as well.

Time is measured in increments of weeks during pregnancy. After a painful colonoscopy, I was finally diagnosed at 20 weeks pregnant. It's been almost 8 weeks - 2 months - since then and I am still trying to come to terms with it. I tell those around me that I'm positive and hopeful; that I'm coping. I try to remain strong and feel good for the sake of my baby. But there are some days and nights when the pain leaves me depleted and despairing.
Angry denial - "this shouldn't be happening to me!".
Hope is replaced by helplessness.

I've always been organised and independent. Every challenge in my life has been bravely approached with a plan and a positive attitude. I have always told myself that I can achieve anything if I want it badly enough. My initial approach to this illness has been no different. I set out with a plan: a medication schedule and strict eating plan (gluten-free) tailored by a homeopath; a positive outlook; and lots of prayer.
Some days I feel as though I'm improving. But my diligent note-taking in a diary disputes my feelings. It brings me back to the cold hard facts.

I know of a friend of a friend who had the same condition which went into full remission after pregnancy. This gave me encouragement in the beginning. Recently though, I am afraid to hope too much. Afraid that denial of this disease will lead to disappointment. So, I vacillate between blind optimism (a life-long trait of mine) and mild depression (not usally a trait of mine).

I don't talk much about any of this - not even to those who are closest to me.

Most friends/relatives have never heard of UC - in fact only one friend actually knew about it and that's because she's a recently qualified doctor. Their reaction is to either downplay it's seriousness or to offer well-intentioned yet completely ignorant advice. I since decided to be selective of who I shared the knowledge of my UC.
Those closer to me like my husband and my parents are very supportive. But I tend to avoid sharing too much with them - i'ts painful to watch someone you love suffer when you know you cannot help them.

It's difficult to not let the illness and the pregnancy become inextricably linked in my mind.
Now that I'm properly showing, almost everyone I meet excitedly asks me how the pregnancy is going. I really have no idea to answer this question. After all, I have no idea what pregnacy is like without this illness.

The doctors have assured me that the illness has not affected the baby in any way - for this I thank God every day. But it's still difficult to differentiate which feelings and physical symptoms are due to the illness and which are related to pregnancy. I am at the tail end of my 2nd trimester yet I never experienced the "honeymoon period" of pregnancy that other woman wax lyrical about.

I do have good days - or more specifically, good periods within a day. It's seldom as black and white as a 'good day' or a 'bad day'. Despite the darkness, I still experience happiness and excitement and all the good emotions. I laugh, I chatter, I cook, I go out. I seem completely normal and unchanged in social situations. I have become adept at hiding my symptoms when I am outside my home. Those around me would never guess at my daily suffering.
I prefer it that way - I'm not ready for them to see me differently or even worse, to pity me.
Only those closest to me - my husband especially - are spectators to the unpredictable nature of this illness. One minute I am the picture of perfect health; the next I am on the opposite end of the spectrum.

I don't want to be defined by UC. As a result, I haven't as yet altered my self-perception to accomodate it. I realise that I'm probably still in denial. But there's a large part of me that is petrified that if I do make UC part of my self-identity, that it will then truly become a fixed part of my life. That that scary word "chronic" will become a reality.