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.