Tuesday, June 16, 2009

Great Expectations

We all have expectations of ourselves and our lives, and act accordingly, most of the time. I had great expectations of myself... in terms of being a wife and a mother in addition to being a daughter and a sister and a friend... all of the roles in life that I had to play. I wanted to give the best that I could in all things and be all that I could to all people. Ultimately, chronic illness changed my life and my perspective on things.

It's already a lot to ask of one's self to want to give the best and be the best... and when illness comes into the picture, well, the script needs to be rewritten. It needs to include time off for plenty of rest, for pain, for visits to the doctor, for hospital stays, for side effects from medication that make you feel exhausted, for down time alone... it is no longer possible to be all things to all people.

When I started having symptoms of Crohn's Disease I was plagued by guilt as well. I felt that I was constantly failing. I wanted to do so much... but I couldn't as I was crippled by the symptoms. In the end I felt like my world was crumbling. The world that I had built in which I was, to some extent, in control over what happened in the course of the day, and the world in which I had the energy to pursue my passions was falling apart.

I was reduced to a very simple and basic motto : "Just get through the day". That was all I lived for and all I wanted after awhile. I reduced the expectations I had of myself, and in the process the expectations of everyone I had around me in my family. It was no longer the most important thing that "if something was worth doing it should be done well or not at all". For a season in my life I did very little because I knew I couldn't do it well... but now I am happy to accept that some things don't have to be perfect, and that with many things in life just giving what we can at that point in time, no matter how little it may be, is truly enough.

I still struggle with guilt. Not a single day passes when I don't think about how I could be so much more than what I am... and yet I also realise my limitations due to chronic illness. Not a day passes when I don't remember what my life was like before Crohn's... and I miss my past life and the simple joy I had of being able to do whatever I wanted. If I had known then that I would have had to live with chronic illness and all its debilitating symptoms I would have drunk so much more deeply from the cup of life... I wouldn't have wasted a single minute of time in sadness or inertia... I would have truly enjoyed the freedom that I had, but didn't truly appreciate, of life with a healthy body.

How to move forward then to living a life with chronic illness? Guilt and regret, sadness and sorrow... these visit whether I want them to or not, but I do not let them linger. I live for the day, but I also want to plan for the future. What unit should I use? The week, the month, the year? Five years from now? I do not know. I only know that I must think ahead to something better so I can get through this moment.

Hope keeps me alive. Hope that tomorrow will be a better day.


Friday, June 12, 2009

My Friend Brenda and Her Journey with Crohn's

Over the past 12 years I have met many patients with Crohn's Disease and Ulcerative Colitis, and some of them have become close friends.

One of them is Brenda. We linked blogs today, and her link is on my page. If you would like to know how someone survives the removal of their colon and life with a colostomy and a bag, well visit Brenda's page. I admire her courage, and her resilience, and her sense of humour, and her "Never Say Die!" attitude.

Thanks for linking up, Bren, and let's do lunch soon. My treat to celebrate my becoming a blogger. haha! We should go to one of those internet cafes and munch AND blog at the same time... :) oooh, I'd feel so young and hip and cool... for a couple of hours it would be refreshing!


Thursday, June 11, 2009

My Pre-Diagnosis Days : Living with the Unknown

A friend of mine asked me what symptoms I had that led to my being diagnosed with Crohn's. I think that's a very timely question, and so here I am, writing about the story of how I came to be diagnosed with Inflammatory Bowel Disease, specifically with Crohn's Disease.

As the phrase "inflammatory bowel disease" connotes, the bowels are involved. In the case of Crohn's the entire digestive tract from start to end can be implicated. My symptoms largely involved my colon, and in particular my terminal ileum, where the small intestine meets the colon or large intestine. Deep ulcerations work their way through the mucosal wall, and scarring occurs as part of the cycle of healing and re-inflammation... over time these scarred areas cause obstructions that may need to be surgically removed.

As it is a disease that involves the bowel, unsurprisingly the symptoms revolve around very earthy things... the sort of stuff we don't talk about at the dinner table, but maybe in blogs :) I had watery diarrhoea up to 10 times a day, colic abdominal pain, low grade fever, joint pains, and reactive athritis in my feet.

The diarrhoea first began during my first pregnancy in 1995, and it was thought that perhaps it was a hormonal thing and left untreated, which suited me fine as I never even took a panadol during my pregnancy. After my son was born the diarrhoeas continued, though I had less and I had few other symptoms. I then went on to have another child in 1997, and shortly after my second son was born, my health went downhill rather quickly.

I insisted on nursing him, and I remember that I had 8-10 watery diarrhoeas, and 8-10 feeds per day... in no time at all I was very thin, and quite ill, and ended up in hospital. I stopped nursing and went on some medications, and got a bit better even though I was not properly diagnosed at that time. Unfortunately, I then developed a fistula in 1998, which is a tract/tunnel that develops between the intestine and another organ...and fecal matter gets trapped in there causing infection and swelling etc. In my case it developed perianally and required surgery... my very first surgery which wasn't much fun at all. The hardest thing was sitting in salt baths for months afterwards every time I went to the toilet so that the area wouldn remain clean and uninfected. I remember reading through many novels while soaking... and not leaving home very much at all.

When my maternal grandmother passed away in 2000, I was deeply saddened and quite stressed... and I developed ulcers in my mouth... this in combination with the fistula and the diarrhoea and joint pains led to my being diagnosed with Crohn's as they are typical symptoms of the disease. I was given steroids (prednisone) and since I responded to them that was taken as another sign that what I had was indeed Crohn's.

My inital response was to completely break down and cry... I think the terms "incurable" and "chronic" terrified me. I bought a book to learn more about it... the chapter on cancer scared me even more! I was depressed, and was referred to a psychiatrist for help in dealing with depression. It was very useful indeed to have someone to talk to and who could help me deal with many issues, some of which I still grapple with as the disease is chronic... it never really goes away.

The best thing, however, about being diagnosed was that finally I was given the right medication, and it worked wonders for me. I had energy, I wanted to go out again, and do stuff with the family... I found my life again! The diarrhoeas became less, and I felt energised and alive. The steroids had their own issues...I found that I had mood swings and was easily irritable, and edgy, and ultimately they affected my bones. I later went on other medications to spare myself the side effects of steroids.

I felt well for a few years, and then decided to have another child in 2002. I decided to go off all medications during pregnancy and I found that my symptoms went away, and I was very well. Someone joked that maybe pregnancy was my cure for Crohn's... I joked back that I would certainly need help raising 15-20 kids if that was the case! Unfortunately though, within 4 months or so after delivery, the symptoms returned... as the body readjusts hormonally etc... and so I was back at the hospital, and on various medications again.

My fourth and last pregnancy went well too. I was on some medication at that point, and able to eat and had few diarrhoeas, though I was severely anaemic. It has taken me 5 years post-delivery to build up my iron levels...

In the process of living with Crohn's I have "starved" for 8 weeks in 2005 when I did not eat but only drank a special drink 8 times a day in order to avoid intestinal surgery, I have had 6 colonoscopies, I have gone on immuno suppressants and other drugs which have troubled me with their side effects, and to some extent, lost a lot of the essence of who I really am, or who I thought I was... I am still reworking the new me... and every time I think I know who I am the Crohn's flares up again, the carpet is pulled from under my feet, and I am at sea.

No one knows the cause of the disease, and hundreds of researchers are spending millions of dollars trying to find a cure. It doesn't really matter what I eat or do... I can ameliorate the symptoms through destressing and dietary changes, but I cannot get rid of it through any act of my own. The fact that I have retained some measure of my sanity through all of this baffles me... and I remain grateful for the loving care and concern of family and friends who have suffered alongside me. I don't know why this disease came to be a part of my life but I like to think I can still find a way to live with it. I have to, and I want to, so I shall!

(for more detailed information on Crohn's Disease, Ulcerative Colitis ie the two Inflammatory Bowel Diseases please visit the CCFA website. The link is at the top right corner of my blog page.)

Thanks for reading!

Tuesday, June 9, 2009

The Personality of Pain

Pain is a recurrent companion of most people with chronic illness. It isn't a friendly, nice companion one desires to keep by one's side... it's one of those forced companions that travels with you whether you want it to or not. Maybe "companion" isn't the right word, but it'll have to do for now.

Does pain have a personality? I like to think it might. I sometimes think about the intestinal pain I experience because of my Crohn's Disease, and I amuse myself by personifying it.

Pain is very loud, and lets me know when it is here. Never one to announce its entrance it barges in unheralded. "Pay attention to me", it screams. "I am here, whether you want me to be or not". "So you thought you got rid of me, did you? Haha!"

Pain can also be selfish and refuses to share me with others. It wants me all to itself. When I try to explain how I feel to others, I can never quite do that effectively. Neither can anyone enter into my experience of pain. I am alone with pain, despite being surrounded by a multitude of people, and at times, when I am already feeling like a wallflower, pain practically glues me to the wall.

In the early days of my illness, prior to diagnosis, I used to curl up at night and cry myself to sleep. I didn't know what was wrong with me, why I was in pain, and I couldn't quite explain it to anyone. My loved ones were bewildered, I was mystified and frankly, depressed, and quite miserable. I had two young sons then, and getting out of bed everyday was a major challenge. Leaving home was something I rarely did, though I was a regular fixture at the playground. Close enough to home in case I needed a toilet or to rest.

Diagnosis helped me tremendously. It took 3 years of symptoms before I was diagnosed. While it came as an utter shock to be diagnosed with a chronic and incurable disease, I was relieved that finally I knew what it was and there was some kind of treatment for it. The first benefit was that I experienced far less pain. Of course the medicines had side effects, and they were awful, but the lessening of pain was simply wonderful.

I didn't miss pain... it didn't let me. It came back. It still does from time to time. But I feel differently about it now. I don't cry as much as I used to and I know that there are ways and means to manage it, and that it is part of my life. I know I will feel better soon enough as I have in the past, and so I wait for that time to come. I have come to accept pain as a visiting "companion". I don't hate it, neither do I expect to be totally rid of it but I certainly don't embrace it either.

Over the years, I realise that pain has changed me. I used to be able to take a fair bit of a pain. My classic example being the fact that I gave birth to 4 children without pain relief. Really, I did! I wonder why now, in retrospect, but that's another story! :) I do know that I have become fragile and my emotions are so brittle that now a little pain seems magnified to me.

My child's scraped knee from falling off a bicycle makes me gag, my stomach clenches, and I cannot bear to look at it. I go to the dentist and am paralysed by fear and nausea, and cry... until the jabs of anaesthesia kick in and I can manage a root canal... I watch suffering and pain on tv or read about it in the papers and I weep. I am weakened internally in some way, but I cannot explain why. I think that years of pain have taken their toll, and in some way they have sensitised me, not to make me insensitive to pain, but to give me a heightened sensitivity.

Most importantly, I have come to accept that no one can share my pain, no matter how much they may want to, or how much they love me, and my suffering is unbearable to them. They simply can't. Pain is very personal. Fortunately, I have come to a place where I no longer suffer in silence but I am able to tell the people in my life that I am in pain and they understand what I mean by that and what I need. I surround myself with the people who love me and accept me with not only my own failings, but with the added burdens of chronic illness and accompanying pain.

So, pain, that old companion of the chronically ill, when you come again I will be prepared, and I know your visit won't be long and I know I can cope because I understand our "relationship", and have the comfort of those who help me manage your visits.

Just pack a small bag for the next visit. After 12 years you've really overstayed your welcome :)


Monday, June 8, 2009

My First Post!

Finally, I have begun writing a blog. I have thought about it for awhile, and actually started this page late last year... but it wasn't until today that I have finally decided that I am ready to write about my life and to share it openly with other people.

I have had Crohn's Disease for 12 years now, and in the process so much has happened to me as a person directly because of chronic illness, and also as part of the usual happenings in life. Along the past 12 years I have come to meet other people with Crohn's Disease, and it's sister condition, Ulcerative Colitis (UC). I have also gotten to know people with other chronic and incurable diseases, like rheumatoid athritis and SLE (Lupus). In all my many encounters I have been amazed at the strength and resilience I have seen in so many people, and to some extent I have found them surprisingly, even in myself.

This ability to carry on despite what life throws at one has become a minor obsession with me... I am now looking at how people cope with Crohn's and UC as part of my studies. I remain acutely aware that I am trying to live through a chronic and incurable disease myself.

Some days I cope, and other days I don't. Some days I am fine and functional and other days I am too exhausted to speak. Some days I laugh a lot, other days I weep a lot. I want to share this journey with anyone who will read about the minutiae of my existence, not only because I feel a compelling need to share the nitty-gritty details of my life with other people, but because deep down inside me I do believe that every meaningful experience each one of us has had and will have has the capacity to encourage someone else.

In that spirit I begin my blog today. I promise that it will not be too dark, that there will be lighter moments, and that I will try not to be overly self indulgent and that I shall endeavour to make the experience of sharing my life with you as interesting as possible. Oooh... sounds like a tall order. I can only try. :)