The Perils of Perfection

Today I feel tired. Muscles hurt and my bones feel weary. I don't know why. My guts are doing fairly well but I did have a busier than usual weekend. After a long time we managed to get everyone off to church and off to a family meal afterwards like we used to do many months ago. Events intervened health wise and I got so weary of going anywhere for awhile and so I spent weekends like I spent my week days, mostly resting at home.

My choir mate's daughter passed away last Sunday after a long struggle with brain cancer. I left the sanctuary of home to attend her wake and I sang with the choir at her funeral. It was a meaningful funeral tinged with sadness as she was only 18 years old. I cried tears of sadness for her life cut short and the sorrow of her family, especially her parents. It was a privilege to sing at the funeral, and I also got to meet some of the members of the Youth Choir from church who sang with us. A seed of an idea planted itself in my mind. Perhaps my daughter might like to join the Youth Choir?

My daughter loves music and singing and drama and anything to do with performing. I asked her if she would like to join the Youth Choir on Sundays at noon, and she was very, very keen. So we all trooped off to church to support her, and to have lunch afterwards. It was a good time. Some of us went more willingly than others, some needed minimal prodding, some went only because of the hope of a promised lunch. :)

As I sat there tears filled my eyes at one point. The point where the priest asked us to pray silently. I prayed for my children. I thanked God for each of them and I asked that He would draw them close to Him and work in their lives. I felt I had to ask that because I know in my heart of hearts that something as personal as faith has to be a gift from God. It isn't something I can pass on, or force onto my children. I'm constantly plagued by the thought that because I have been unwell for all of my children's lives that I must be to blame for any shortcomings in our family, though when I think deeply about this I do feel I am being too harsh on myself.

Living with chronic illness means that it can be difficult to be consistent. I find it very hard. I always felt going to church every week was the right and perfect thing to do. I wish I could be on that pew in church with my children all scrubbed and shiny every weekend and looking like they really loved going :) I have found it so hard to keep going anywhere week in and week out. It's exhausting. It's tiring. Is it even necessary? Does God understand? Will others?

I am only too aware of my own weaknesses, and those of my children. I know what we all need to work on. I know what we all need more of, and what we need to prune from our lives. More love, more generosity, more kindness, more charity. Less selfishness, less meanness, less unkindness, less squabbling. Basically take out the negative aspects and fill your life with the positive opposites. :) It sounds so easy but it isn't really, and it's a lifetime's work.

I have finally outgrown the need to be perfect... I used to think my kids were the ultimate reflection of me, and so if I was perfect then they too would be perfect. But who judges the perfection in us, and how can our fellow man judge when they themselves struggle? As I sat in church I thought of my children and their different personalities, the different journeys each must take in life, the different career paths they might pursue, their different giftings and talents, and I realized that in actual fact, it's largely beyond me. It isn't up to me at all. They have their own lives to live and the more I try to force them into a mould that reflects me, the more likely I am to push them away, and derail them from becoming who they are meant to be. It isn't about me. It's up to them to make the most of every opportunity given to them, to decide on their futures, to explore beliefs and take ownership of their faith, and to find their path in life.

I wish that I could easily cut loose from the myriad of expectations that I perceive to be important. I expect a lot of myself, and I think I expect the same of others. When I am too tired to do much I get overwhelmed by guilt sometimes and I feel I am to blame for many things. I see failings and weaknesses and I think that if only I had been well, and more actively involved and doing so much more this particular weakness in this child, or this imperfection in myself would not exist. And so guilt eats at me, leading to self blame. Guilt and blame born out of some need to be perfect. But I push them away. I must, otherwise it would be hard to carry on, and carry on I must!

I told my dear husband how I felt and he said to me that it's not about blame, and that we can only do the best we can. I have told myself the same. Don't blame myself. Do the best I can. If it's just a tiny effort, then so be it. Do better next time. It is the heart that matters. I could sit on a pew every weekend and never be touched and never know the goodness of God if my heart was hardened. I could take my children there everyday but if God doesn't speak to them then it's a pointless exercise. And God makes all things beautiful in His time. Not mine.

I don't believe in coincidences. From the sadness of a funeral something beautiful was born. I think I met the members of the Youth Choir quite by divine appointment. The Youth Choir is exactly what my daughter needs at this point in her life to keep her faith meaningful to her. It's given us a fresh approach to something very central to my heart : functioning as a family that supports each other, and loves God.

One of the things I remembered from church yesterday was this : "When God calls us to do something He doesn't expect us to always succeed, but He does expect us never to quit." I like that. I do what I can. If I succeed, super! If not, keep going. Never give up. Certainly motherhood and chronic illness make for a dramatic ride... but I'm allowing myself to fail, I'm not expecting perfection, and I'm not giving up.

Thanks for reading

Pav

I know what's coming, I wish I didn't

The thing about living with chronic illness is that after a few years, in my case almost 16 years of symptoms and 13 years since diagnosis, you just know so much about your illness. I know all about it, and sometimes I wish I knew nothing. I know what to expect, and what meds can do to me, what surgery is like, what months of endless symptoms I have endured and the desperation of trial and error experimenting with drugs to find the optimal dose.... and sometimes I wish I knew nothing. That I could just face each experience with a blank slate and let a new experience leave its mark, not anticipating what is going to happen based on former experiences.

That would, however, negate the value of lived experience, or is that experienced life? :) Yes, I do wish I didn't know that trying an immunosuppressant like azathioprine would cause havoc on my system, but I knew when I began going on it this second time round last August that it would be hard for me, because I had tried it before. In fact, the side effects were worse this time. When the dose was increased to the appropriate dosage for my weight I went through nightmarish migraines and vomiting... and having gone off this drug for just 5 days I feel transformed. I feel alive again. I have no headaches, no vomiting, far less photo sensitivity, no feelings of constant fluey-ness and extreme fatigue. I literally feel transformed. I feel good.

But the Crohn's symptoms aren't under control. My tummy isn't well. We're standing by 2 antibiotics to deal with the watery diarrhoeas... but I am afraid to take them, again because I know what will happen. I will have even more diarrhoeas, almost uncontrollable. I will be drained and lifeless. I often get depressed on antibiotics. I will be afraid to leave home because I need the comfort of my own amenities. I will lose my apetite and eating will be a chore. I will feel ill, in the hope of feeling better.

I have decided not to take these antibiotics yet. Just waiting in the hope that my tummy will settle on it's own maybe soon... though that isn't likely to happen. I also have a busy weekend coming up and I don't want to be toilet bound... I want to leave home and do stuff with my kids and friends. I want to live. I want to make plans and be able to fulfill them, not have my life hijacked every now and then by meds, side effects, the disease. Maybe next week when the kids are back in school I will be brave enough to take this double whammy of antibiotics. Ugh.

This version of the disease that has returned after surgery seems to be a tough cookie version. The kind that is defying the usual meds. What's left in the arsenal of weapons that I haven't tried before? Should I resign myself to a life of endured side effects in the hope that somehow I will get better, even if I never feel better? But I want to actually feel better, not just remain symptomless!

What quality of life is there if symptoms disappear but a person doesn't actually feel better? If the side effects from the meds make you miserable then what's the point? Ah, but if we don't get the inflammation under control it will result in eventual strictures/obstruction necessitating surgery, and I have already had 40 cms or so of my small intestine removed. I don't have a lot to spare for further surgeries!

So yes, I know what's coming. Trial and error... let's try this or that and see what happens and fine tune and tweak. And test our blood and urine and occasional stool samples and along the way we'll scope and scan and x-ray and monitor. And somewhere in the midst of the many weeks and months of all this going on, somewhere in the midst of all this trial and error, living occurs. I continue to function and do what I can. But will I find that sweet place in the spectrum of trial and error that will result in my going into and staying in remission ie symptomless? And at what cost, this "symptomlessness" if the side effects torment me?

I wish I knew nothing of all this. Oblivion. Or is it Ignorance? Yes, ignorance is indeed bliss. Not knowing is easier than knowing. Though I comfort myself that having gone through what I have I can encourage others, and yes, I can steel myself for what is to come. I can shed a few tears knowing I will suffer but I have always seen the light at the end of the tunnel, and some days it's been manageable and others days not so... but overall I'd really have to say life is good.

Despite everything, life is truly good. I remind myself often that I am blessed. Family, friends, love and affection, 3 square meals, a lovely roof over my head, some ill fitting "fat on steroids, skinny in a flare up" clothes... I have so much. What's there to complain about? Nothing essentially. The discomfort, the occasional pain, the indignity of a disease involving (Gasp!) "bowels", the mental and emotional anguish I feel, the guilt I constantly push away... All of these things are battles I fight daily. I know my mind and my heart and I know the wars I must wage in order to emerge victorious. Only I can fight this battle, no one else can do it for me.

I wish I didn't know what the rest of my life is going to be like. But I think I can imagine it. An incurable chronic disease doesn't leave many options. I have to live with all of this now, and tomorrow and probably forever. At the pharmacy the other day I saw adult diapers and my heart did a skip. Then I was scanning shelves for fun (yes, I need a social life! :) ) and I saw colostomy stuff... stuff that helps you live with a bag that collects stool once you have had your colon removed. Oh God. So much to look forward to...maybe I won't go through all that? Maybe I'll be spared? Maybe I'll just fade away quietly in my sleep once my kids are all grown up and my purpose in life and the reason for my existence, whatever that is, has been fulfilled... Maybe I'll be spared the indignities of old age. Maybe I'll face those indignities better, having suffered now? What if I just get so tired and fed up along the way? No, I must not! I shall not! Wage that war! Fight that battle! Win it!

My friend's teenage daughter is fighting for her life. She has brain cancer, and then caught 3 opportunistic infections, one in her lungs. While struggling to breathe on her own she had an undetected stroke. She was placed on a respirator for a few days, and when they tried to bring her out of sedation they realized that some oxygen deprivation had occurred, and they found the stroke. She's conscious, but not responding. We are all praying desperately that she will recover. How does someone recover from so much? It would take a miracle. God in His mercy can heal. She's so young, she's barely lived. Let her fully live, and live fully. Please, God.

I no longer seek desperately for my own healing. When confronted with the many sufferings of others, in this case my friend's daughter, and her own suffering, and that of the entire family... I feel so terribly, desperately, indescribably... normal. I look so normal no one could guess anything was wrong with me. How can I ask for anything more from God when I already have so much, and so many are in such far more desperate need than I am? I have been asked to seek healing, but I no longer actively do. God need only say the word and I would be healed. That He does not heal me in no way diminishes my regard for Him, He must be far busier dealing with those whose suffering is far greater than mine. Or not. :) Whatever the case, I have no answers, and these days few questions. I do know that I'd rather ask for someone else's healing than for my own.

Whatever the future holds, I will always know what is coming to some extent. I just pray for continued grace to accept the things that I truly cannot change, and for a loving heart to look beyond my own little world and to feel for others. If I can do that and it makes my life just a little more meaningful I am happy.

Thanks for reading.

Pav

Numb and Dumber

I've just gone off steroids, namely Prednisone, after almost 6 months of tapering from 30mgs down to zero. I have to say nothing quite gives you a roller coaster ride like Pred does. One of the things I dislike about life with Crohn's is having to go on drugs that affect me in horrible ways. In addition, there is the fact that as one ages, bits and pieces of the body start to fall apart. If one lives with pre-existing chronic illness then the bits and pieces falling apart is likely to be accelerated, and so many find themselves aging before their time.

I think the worst thing, for me, is the sense that my brain may be aging fast. My friends tell me they too have trouble remembering things, they too are confused from time to time, they also feel a little brain dead on occasion and forget what they had for breakfast. Phew, I am not alone. But I am scared that my brain may be aging much faster, and I wonder if my meds are affecting it in any way.

The other day I tried to say something to my daughter, and a complete sentence of pure gibberish came out. I was shocked. I recovered and made sense when I next spoke, so I figured I wasn't in the middle of a stroke or something! But what happened to my brain, and why couldn't I string some simple words together? For the next few days I noticed that I kept getting consonant sounds mixed up, here and there, but eventually that passed.

I feel numb and dumb sometimes in my brain. I try to make intelligent conversation and feel like I am failing all the time. Either it doesn't sound intelligent to me or I am afraid to engage people because I don't want them to think I am stupid. And so for some months now I have chosen largely to hide away. Not quite a social recluse, I prefer to write on Facebook, or sms my frens where I can type and re-type and self correct. And yes, my spelling mistakes are piling up and I am embarrassed by that.

Wondering whether my hormones are out of whack I did a hormonal blood panel test. Twice. Both times the results say I am menopausal. Huh? Or is that Duh? Really? I do remember other women saying that when "the change" came into their lives they went through a season of brain fog. I think I have brain fog. Along with brain swamp, and maybe brain marsh too :)

Definitely something is happening to my brain. It's losing it's sharpness. I'm losing my mental acuity and that makes me very sad. I used to be a Uni debater. I enjoyed witty repartee. On the spot speedy responses, the thrust and parry of ideas flowing in a near frenzy. What a far cry from those days. Of course, that was in the late 1980's... It's been over 20 years now! But I cherish that side of me, it's an important part of who I am. To find it diminishing, even in the slightest form, is disheartening.

Just how much of what I am experiencing now is due to my meds and indirectly to Crohn's? I wish I knew. I wish I could stave off this mental slide. I wish I could rejuvenate my brain and feel smart again... Maybe I should just accept my diminishing self and love myself and write a whole lot more and not worry about being with people and sounding intelligent. People are tiring anyway. Haha! Amazing how the mind can justify a million things if it tries hard enough! Yes, people are tiring, and I'm bad at sitting down and being quiet. I have to speak, and then I worry about sounding intelligent! haha :)

I remember once a few years ago I attended a fancy dinner, and I was so tired and probably my brain was shutting down for the day and I had so little to say to the near strangers around me. I am pretty certain I heard one man tell his wife, "See that's what happens when you stay home and be a housewife." Gasp! I don't always want to chat up strangers, though on a really good day I can do a decent job! But the cheek of the man! I am not going to go into the whole thing about stay home vs working mums... people do what suits them best. I don't think my brain has atrophied from staying home. I do know that my heart has grown. So, maybe that's a trade off I can live with! Seriously though, it does take a brain to raise 4 kids! Let Mr Smarty Pants try it for a week. He'll be begging for mercy! :)

I have become more sensitive to remarks about my brain or lack thereof. Just today I was hurt by a stranger who probably meant no harm, but seemed to imply I wasn't witty. I connect witty with brainy and so an attack on the witty front is a an attack on the entire brain! I was saddened. I was tearful. I was overwhelmed by a sense of failure. Oh my. I put it down to the effect of steroid withdrawal. Pred is well known to cause a flux in emotions. I decided to be kind to myself, and go with the flow. I wasn't stupid, I told myself. Just silly. (which is not the same as being stupid! haha!) I just wish that I had a thicker skin. Then I'd shed fewer tears, and life would be a lot less moist. Maybe the brain fog is a result of evaporating tears? A sort of enveloping higher humidity caused by tears burning off my overly heated skin? oooh :)

Well, who knows why the brain fog is here. Let it be. I embrace whatever it may be. I hope it isn't anything serious. I really don't want to deal with too much more. In the midst of the brain fog I am still able to write, to chat with my kids who put up with the mists of time that Mama emerges from, to make my husband laugh, to cheer up a friend in need. Life is good. Perhaps the less verbally said the better? My new mantra... "Less IS More" :)

Thanks for reading.

Pav

December's Descended Upon Us So Soon

Wow, it's December. Where did this year go? I haven't a clue. It's supposed to be a good sign that time passes quickly. You're busy, life is good, exciting things are happening in your life or maybe you're just older and remembering things is just a bit harder! A bit of both for me, I should think!

I do remember some things from this year. I haven't updated my blog for many months now since February. Something major happened that sneaked up on me and when it landed on my lap I was paralyzed for awhile. Unable to express how I felt about it in words for awhile, only sad and heavy tears fell but eventually I managed to deal with it, and things improved, and life went back into a normal state, and my heart soared again.

I have my son's permission to share his story on my blog. My youngest son, only 8 years old, was diagnosed with Crohn's Disease too in early March 2011. Our journey to diagnosis was 5 months of recurrent daily fevers, mouth ulcers, eczema, abdominal pain and bruising on his legs. Finally he was admitted, based on my having Crohn's too, for a barium xray series, colonoscopy and gastroscopy and ultrasound scans. Ultimately they said his case wasn't too serious, but he was underweight and having trouble with absorption in his small intestine. He was put on an 8 week liquid only diet of just a special formula, Modulen, which has some anti inflammatories and some growth factor.

He was extremely determined to succeed and was so amazing at managing his health that everyone was inspired by him. He managed to put on 7 kgs, and all his symptoms disappeared. He's in remission now, and we are desperately hoping he will stay that way. He's able to eat and play and enjoy school once again. We are relieved and just so grateful to see him happy and doing all the normal things 8 year olds do. I'll never take any of those things for granted again. Ever.

Needless to say, getting through the diagnosis was hard on all of us. I especially felt guilty. Tremendous guilt. Did I pass on a faulty gene to my son? Is that why he too has Crohn's? Are my other 3 kids at risk too? I remember when the doctor put my son under anaesthesia for the scopes and I watched as he drifted away and we were told to leave... Tears filled my eyes as I looked at my son's little body on the bed. He's so small. He's just a little boy. Why was he there?! It was my fault!

My husband had stayed up half the night before helping him get his bowels cleansed for the procedure. He drank almost 2 litres of a nasty tasting liquid and went to the bathroom several times so the doctor could get a clear view of his guts. He was so brave. He was so determined. My husband was so patient. I was so exhausted. We'd had a few months of recurrent fevers, and anxiety, night time vigilance and some sleep deprivation... we were tired out ourselves. At diagnosis we'd spent a few days in hospital, waiting for doctors, waiting for tests, unsure what to expect, hoping it wasn't Crohn's, being told it probably was, remaining unconvinced... until he did so well on a liquid diet. Then we knew the truth. His guts needed rest and healing. Indeed, something had been wrong with them. But now he is better. God, please let him stay that way. Please. I recall in a moment of grief telling God that I could bear all the pain and suffering that Crohn's brings, give me extra if need be, just spare my son.

Then I remembered the personal process I had been through of grieving for my lost health and how I stopped asking why me, and decided to find a way to live with this illness, and I knew that my son would have to do the same, and in a strange way I was grateful it was something I could identify with and understand, and help him with, and he could trust that I knew how to help him... and I told myself that out of all this seeming sadness and pain something good would come, whatever that may be. So we moved together to a place of acceptance, and to a common understanding of what it means to live with chronic illness. I am his support, and he is my inspiration.

Once my son started improving I turned my attention to another pressing issue... my weight loss. I had lost 20kgs in 5 months in tandem with my son's illness. While my son had been unwell, I too had been silently slipping away. I ended up spending 2 weeks in hospital fed through a tube inserted into my arm and having my essential minerals boosted and my general well being restored to normalcy. I went home a day before I turned 44 years old, feeling 84 :) but very happy to be back in my personal space and home with my family.

After a battery of tests ranging from cancer to tuberculosis they found that the Crohn's, removed at surgery in Feb, 2010, had come back in a slightly different form. I don't claim to understand it all... but it became imperative that I go on some serious medication. So I opted to try a biological agent called Humira. There was nothing else left in the doctor's arsenal of weapons, I had tried them all.

Humira is injected sub-cutaneously into the abdomen, and each jab cost me S$1000. I had 4 jabs to start, then 1 every 2 weeks or so. After 3 months it became apparent that the jabs weren't working so well, and I needed something else. So we went back on the age old, easy, effective meds with nasty side effects - steroids, in this case prednisone. I also began taking azathioprine, a powerful immunosuppressant. I also take budesonide, a steroid aimed at the terminal ileum where my disease was active prior to surgery. All 3 meds lower my immunity which is supposed to help the Crohn's. All 3 meds have side effects. My eyesight became blurry, so I just got new glasses... I might just be getting older! I am highly photosensitive, and wear sunglasses at home a lot as I struggle with migraines, I am sometimes so hungry I could eat a cow, other times, I feel nausea. Due to the steroids I have bloated up, and people think I am pregnant, and I feel kinda hideous. I am emotionally a bit of a wreck as I cry so easily and am irritable, and though I want to be with people I find them so draining. And tiring. And some days I want to bark at everyone, and bite off somebody's head!! Grrr. :)

I'm tapering off steroids now. My tummy isn't going to do too well... I can tell. But I'll make adjustments and see how it goes. I can't live with these side effects. I know my bones are deteriorating too. Steroids eat them up. I can feel pain in certain bones. I have recurrent infections too, and I'm on and off antibiotics for something or the other. But nothing so seriously debilitating that I cannot function. And so I remain grateful in some way that while I am unwell I am not so unwell... it's all kind of relative right now. Which may not be the best way to deal with life, but hey... when I had surgery I was thankful they only removed 40 cm of my small intestine, and not the whole thing... so relative is as relative does... or some such thing! Life's a box of chocolates, you never know what you 're gonna get! Oooh. that thought makes me hungry! :) (and I do know what I'm gonna get... there's a Kit Kat stashed away somewhere! hahahah!)

One good thing that came out of all this illness was my husband's rethinking his work life, and taking a 6 month sabbatical of sorts from work. He had always wanted to take time off from legal practice, but it was difficult to do that. I think with both our son and I being unwell he truly felt the need to be there for us more fully. It's been simply amazing having his presence, and watching him do things he has always wanted to do. It's been a great help to me, and to the kids to have him with us. I know our lives have been so enriched and we are going to miss him when he goes back to work next year.

One major project this year was moving house. We moved into what I call my pre-final resting place. I am never moving again. They say moving house is as stressful as a death in the family. They, whoever they are, might just be right! I am so exhausted though deliciously so. It's a lovely place, and I am grateful to my husband for his loving thoughtfulness in the many things he arranged for me and the kids. I am blessed to have him in my life.

The end of the year looms. We will ease into 2012 with my eldest son's O levels being the next big thing. In between will be all the small things that make up life. I hope to enjoy each one of them to the best of my ability. I hope to rise above the challenges I face every day with my guts and meds. I hope to be the best I can be in every thing I do. I'm going to try my best and hope for the best and live with whatever happens thereafter. And somehow I hope to cherish and love myself through my many failings.

The year flew by, December's descended upon us so soon. Some sad things happened, some good things happened. I thank God for all that happens in my life. If I believe, truly believe that He is in my life, then I must thank Him for both the good and the bad. That's the way I make sense of what is happening in my life. It keeps me sane. And yes, being sane is helpful. Generally. Usually. Largely :) I do thank Him for everything. I remain grateful. I am blessed.

Thanks for reading!

Pav

Contemplating Choice

Just last night I was making light of the choices I had open to me... alone, with half the family away and the other half asleep, I thought I might watch a movie on my laptop in bed. Snuggle down, have a nice hot drink and watch something. I like moments like these when the choices are so simple. A funny, silly movie or a weepy, dramatic one? The choice was entirely mine! No need to worry about what anybody else wanted, or what was suitable for everyone. Just me alone in charge of that block of time, free to decide as I wished.

I wish that I had that same freedom of choice in all other areas of my life, but I don't. I can accept many of the situations in my life where my choices are curbed, but the hardest time I have accepting my choices, or the lack of them, is in living with chronic illness. It's just so hard to be up against a rock and a hard place, but that's how I feel.

I've been losing a lot of weight, and in all likelihood am having some sort of poor absorption over the past few months, especially without my gall bladder post surgery. I have endless waves of nausea, acid reflux, and diarrhoea and I am so tired that leaving home sounds exhausting. The doctor doesn't know exactly what's wrong, and I may be having scopes soon. Oh, boo. In addition, I got some kind of flu like thing with phlegmy cough, and so I began a combined dose of 2 powerful antibiotics commonly used for patients with Crohn's Disease... the evil Cipro and the nasty Flagyl.

I hate them both. I HATE, HATE, HATE them both. They hollow you out from the inside. They multiply all your existing symptoms... I can't leave home when I take these drugs. I am either drowsily at my computer, actually fast asleep, watching tv with the kids or stuck in the toilet. There are no other alternatives when I'm on these drugs.

Worse still, they make me feel like an emotional wreck. I don't want to talk to anyone. The thought of a phone conversation exhausts me. The thought of dealing with people tires me out. The very thought of human interaction outside of my family is simply too much. I can manage the kids, and hubby, but anyone else would be too draining. I can write, I can sms, I can "Facebook", but please, I don't want to talk. Talking is tiring. I have to worry about all your needs and wants, and believe me, you have them, even if you don't articulate them... I know they are there. And right now, I can't bear to think of them, I truly can't. So I can't and won't and don't talk.

But then I feel alone. And it is lonely. And it doesn't get any less lonely. Only lonelier. And tears fall so easily it seems that I am living on the edge of a loose tap that flows so many, many times a day. People do or do not understand, depending on their own journeys in life. Can they have the compassion to understand how hard it is to feel this way, and to keep feeling this way day after day and to just keep going simply because to not go on isn't a choice?

Choices are nice when you have them. Choices are even a luxury for many. Shall I eat rice or bread today? I am grateful I can ask that question because I have those options. Shall I take Cipro and Flagyl or just let my body continue to fall apart? I don't have a choice. I have to take the stuff, in the hope that it will help me get better.

I do so hope I get better soon. Someone recently said I was brave and courageous. I'm not, really. I'm just frightened that if I stopped pretending to be I'd collapse inwards and the fake facade that is me would give way and there would be a crumbling mass of flesh and bone with a very tired and worn out soul.

I think Cipro and Flagyl add to depressive feelings... I know how easy it is to feel down when living with chronic illness, and the flu adds to that, for me, and antibiotics just magnifies all of it. I tell myself this so I can go on. It's the Crohn's, it's the flu, it's the antibiotics. It isn't me. Really, I'm not a weepy mass of quivering flesh who finds life exhausting and would like nothing more than to sleep forever and never have to talk to a single soul. That's not the real me. The real me is smiley, cheerful, witty, sociable, lively... only through no choice of my own has the real me been hidden away for a season. Through no choice of my own have I evolved into what I am and feel today... but the memory of what I was, and the hope of what I can be keeps me going, even as I try to love myself through what I am now.

Hopefully the sun will come out and the clouds will clear... soon.

Thanks for reading.

Pav

Legacies in Life

When I have had my hardest struggles with chronic illness I have often wondered what my children will learn from my life experiences. I wonder what legacies I am leaving them, and I hope they are learning good things. Hopefully things like strength in adversity, that it's okay to have moments of weakness and to cry, that one can still live a purposeful and meaning filled life with a weakened body, and that life in itself is to be cherished no matter what our physical state may be.

This past weekend we celebrated my Mum's 70th birthday in Kuala Lumpur. As I prepared for the gathering, I found my thoughts wandering... I wanted to make a little speech about some of my Mum's best qualities, and immediately several ideas came to me. In the end, I focussed on her generosity, hospitality and kindness. I realized that so many of us at her birthday dinner had experienced her love and kindness, had partaken of her lovingly prepared meals, had visited her home and found love and acceptance therein.

At the dinner, my children sat listening to my speech, and I knew that they would remember what I had said for some time. I knew also that the day would come when they might have to distill their own thoughts about me. I wondered what they would say, and I know that every day we live now is a process of building memories... some good, some inevitably not so good. Would my children perceive me as being chronically ill, or rising above illness? I want them to think of me as someone who fought the good fight, and who managed to survive no matter what life threw me.

My Mum had a hard life in many ways, but she's a survivor. God has blessed her. She always says her children are her best gifts from God, but I think she is the best gift God gave me. I don't always feel that way, but I know deep down in my heart that God knew the kind of Mum I needed, and blessed me with just the right one. I am truly grateful.

Mums and their children, children and their Mums.... a never ending cycle of relationships affecting each other through the generations. Inescapable and inexplicable. A real mystery. A bond physically severed at birth and yet never really severed ever. Two hearts intertwined, and lives forever bound even as one person, the child, seeks to break away, and the other person, the mother, learns to let go. Love and hurt. Joy and pain. All found, all bound, in that one relationship, a life time legacy of love.

Thank you, Mum, for your loving legacy... I like to think I inherited some of your generosity and hospitality, your kindness, and love for books. I do hope it all rubs off on my kids too. May they learn to give freely of themselves, and in so doing create more loving, living legacies to pass on to their own children.

I am blessed.

Thanks for reading.

Pav

My Reason for the Season

It's Christmas time once again, and the New Year is almost upon us. That lovely time of the year when the first school term winds down, Papa takes time off work, and we all hang out together remembering the birth of Jesus as we enjoy our Christmas tree lights and plan gifts and get excited about the holidays, and the impending new year.

Very soon I shall bid goodbye to 2010 and welcome all the new challenges of 2011. I asked myself what those challenges were... and then I realized that in essence there are no new challenges, just the same old ones that carry forward through the years, at least that's how it works for me. There are no new resolutions, just the same ones that have plagued me for some time now.

Hardly cause to celebrate, I know. The fact that my imperfections haven't gone away. The fact that some of the things that troubled me 5, or 10 years ago still trouble me today. The fact that I might just grow really old and keel over the same person, having never really changed much over time.

But what's so bad about that anyway? I'm 43 years old. I've lived half my life. This old dog isn't learning any new tricks. I don't even know if I even want to learn any new tricks. Half the time I just want to roll over and play dead because I'm just so bone tired and weary and fed up of life, and the world seems like a depressing place with terrible injustice and poverty plaguing millions... but I digress. This is supposed to be about me :)

I think that for me this year, 2010, I want to thank God for me. Yes, for plain ol' me. For the rough edges, the imperfections, the failings, the weaknesses. I am grateful. Yes, I am indeed. Without all of them in my life I wouldn't need the grace of God or His love and mercy to get me through the day. I would be so self reliant I wouldn't need anyone in my life at all. But the truth is I really do need God, and people, and the realization that I do reminds me that I am human.

I am just so incredibly human. Frail. Fragile. Feeble. On so many levels. Like baby Jesus in the nativity scene, wrapped in swaddling clothes. And yet within him lay immense love, great hope and tremendous peace. Can one hold both joy and sorrow and not break? Apparently, one can.

Sometimes I feel so conflicted, and a little lost with my feelings. I sincerely intend to convey goodwill and charity and for love to emanate from my very pores, but that doesn't always happen. I know that many times I am just too tired to be nice. I want to be left alone. People exhaust me and tire me beyond belief, and yet even if they have no expectations of me, I have many expectations of myself.

Therein lies the trouble. I want to be many things that I am not always able to be. I feel inadequate. I feel guilty. I feel saddened. But at the heart of all that goes on this season, the very root of it all is truly love. The love of God shed abroad in our hearts and our lives through the gift of his Son. The love of family as we draw close and cherish each other and make our time special in our own way. The love of friends who share our lives and their love with us, and who bless us as we bless them.

The very love of God that compels me to love myself, just the way I am, despite whatever I may think of myself. The love of God that says to me that He loves me no matter what and nothing can ever separate me from the love of God. I am grateful, I am glad. I am me.

God's love. My reason for the season.

Have a Blessed Christmas, and a Very Happy New Year!

Thanks for reading.

Pav

Please God, Spare My Kids

Some strange gastro bug got my 3 sons this week. The youngest had fever, so he stayed home, but the older boys, being teenagers, happily soldiered on to school until it was just too exhausting, and I could tell they really needed a rest. No fever, but stay home, please. No fun having tummy issues at school. No fun at all.

Having been diagnosed with Crohn's Disease in my early 30's I remain grateful that I got through school and Uni and all the challenges therein before I had to deal with chronic illness. Now that I have 4 children I am sometimes plagued by fears of their getting Crohn's. There is a genetic link to the disease. As with many other diseases, if a parent has it your own chances are increased, though with Inflammatory Bowel Disease the risk is higher if a sibling has it.

So every abdominal pain, every episode of food poisoning, every nausea incident, every one of those runny belly moments brings a stab of fear to my heart. I worry if it is something more serious than a passing bug. I want details of food intake, pain location, stool texture, quantity and frequency... my kids must find my interrogations annoying but they don't often object. I do think they see a passing shadow of worry on my face as I try to make light of it... I can't help worrying.

What causes Crohn's remains a mystery despite years of medical research. Some of the reasons mooted include bacterial infection that activates the immune system into overdrive, and it then never resets itself, and the body attacks it's own self. I cannot remember exposure to any particular bacteria, neither could I have shielded myself entirely. I refuse to be overly protective of my kids, in some fear of them catching a bug that could cause problems. Apart from general decent hygiene, and not eating poorly cooked food, especially meat, I don't insist that they eat overly sterile food either. Their home environment is reasonably clean but not too clean... I do so miss our home in Seletar Camp where the kids roamed the garden barefoot, tracking soil and mud into the house, playing for hours outdoors, building their immune systems in tandem with nature.

Some say a change in environment can trigger an immune response. I know I moved country from Malaysia to Singapore and a few years later Crohn's crept into my life. Would I have been well if I'd stayed home in KL forever? I don't know. Can I insist that my kids stay in Singapore for the rest of their lives so as to avoid problems? No, I can't. In fact, I encourage them to travel, and they've traveled, some more than others, to Malaysia, Indonesia, India, Nepal, Switzerland, Australia, New Zealand, Italy, Spain, the UK, Thailand, South Africa etc. I want them to see the world, the not so clean parts of it, as well as the highly sanitized portions. I want them to appreciate what they have, as they see others with far less. I want them to see their own place in a larger global picture. I suspect they will study abroad and eventually live abroad too. Go explore the world, find your place in it and thrive. I hope early exposure to new and different environments will toughen up their immune systems.

Some argue that a change to a largely western diet of fast food and high sugar content has caused problems like Crohn's. I never ate much fast food or sugar prior to getting Crohn's, so I don't think diet played a role in my case. I exercised a fair bit, had a decent metabolic rate and was well within my BMI. Now that I have Crohn's I have to be extra careful, because some things make it worse. So sugar laden stuff isn't easily available in our house, and I try to limit my kids' intake. Not entirely, because I don't think that's the best way, but it's rationed.

What do I tell my kids? I do tell them to make healthy choices, but it is not always possible, especially at school, and yes, they love pizza, and the occasional trip to MacD's. I ration these out, and I try to focus on freshly cooked food, and fruits and vegetables in decent doses. Will they always make the best dietary choices once they leave home? I don't know. I hope so, but they will have to take ownership of their own health some day, and I hope they will remember what I have tried to impress upon them.

Stress is supposed to affect the immune system and can cause problems too...but which one of us can live a stress free life in this world? I am told that stress is bad for me. Yes, I know it is, and yet where can I flee from it in this day and age? It surrounds me. It surrounds my kids. I try to reduce stress, for all of us, but some stress is really intrinsically needed for without it we might never accomplish much. So how to manage stress and make it work for you...these are skills for all of us to learn, alongside skills that allow us to relax and let go, to achieve that elusive balance that many spend their whole lives searching out.

What I can do for for my kids now is to allow them to live without fear, and to let them enjoy their lives, not worrying about things truly beyond their control. Who knows why and how I got Crohn's, but I pray my kids will be spared. I know what it means to live with this disease, and I wouldn't wish it on my enemies. Well, I can't think of any enemies... :)

Seriously though, go forth and live, without fear. I wish you well, always. And yes, please God, spare my kids.

Thanks for reading,

pav

A String of Pearls

Some days you wake up and you just know in your heart that today is going to be a fragile day. A day where things might shatter so easily because they all seem barely held together. I, myself, me... barely are my pearls strung together for the day before I feel tension in the string, and it's entirely possible that the string will snap and today all my pearls will fall to the ground and roll away, much to my distress. Loosen the string, lest it snap. Relax. Breathe deeply. Exhale. Repeat.

On days when fragility seems to overwhelm me I hide away. I am not fit for public consumption. Lest I turn a stomach, upset a mind or cause unhappiness in some way, I choose to be alone. Alone in the knowledge that this way I will hurt no one, this way no one will hurt me; this way the day will pass, and tomorrow will be a fresh start.

Today was a fragile day but I could not hide away. I had to meet people outside of home, I had to talk with strangers, I had to deal with life, full on in the face despite my wanting to be alone. Happily I managed it, but at a cost to myself. I hope I left everyone happy in my wake, but I am not happy. I am exhausted, drained, lifeless. I am also saddened. What saddens me I do not really know, but contact with people exhausted me today, and any surplus I had saved for a rainy day is thoroughly used up. I have nothing left to give, and nothing for myself, and that makes me resentful. I resent being resentful even. :)

Thankfully, tomorrow I do not need to face anyone outside of home/family. Thankfully, tomorrow I can gather my pearls and put them on, one by one in peace, by myself. A string of pearls reflecting who I am, representing my day, possibly even my life. Each pearl a jewel discovered through some struggle, some suffering, some pain. Each pearl precious in itself, and together a combination of many colours and shades, yet each perfectly round. A string of pearls I work on everyday, and on some days I make more progress than other days, yet each day I celebrate them. I remember them. I lovingly remind myself of them and of what they mean to me, and what I am to myself and to others, and I am comforted.

Thanks for reading.

Pav

Facing the Future Unforetold

Every now and then the thought comes to all of us...what if my life had been different? We wonder how our lives might be now had we taken a different path, or if events in our lives had happened differently. It's a very normal thing to think about, and isn't really full blown regret...maybe just a tinge of regret with remorse or a sense of sorrow at the past that has led to the present, and uncertainty about the future.

All of this can be magnified many times over for people who live with chronic illness, especially when illness and disability has visited them through no fault of their own. Then it is not so much the road not taken, or a decision made that turned bad or a matter of poor choices, but simply something that happened to them. Out of the blue, disease came upon them. It sneaked up and decided to pounce, and gobbled up a life. But rejoice, people say, that you are alive! Yes, you don't have cancer, be grateful!

And so the chronically ill remind themselves that they have so much to be grateful for, despite all that they have lost. The days, weeks, months, even years, eaten away by locusts, if you like... munched up by pain and trauma, turmoil and tears... pain so visceral and real that only someone else who has walked the same path of suffering can understand. Lost time that can never return. Time spent curled up in agony, hours spent trying to cope and make sense of what is essentially senseless... disease that comes out of nowhere and devours you bit by bit from the inside, leaving you hollowed out. Time that could have been better spent doing things more meaningful, investing in one's happiness, and the happiness of others, loved ones who depend on us, who need us, and yet for whom some days, we cannot be there. We are there physically, but trapped in a world of pain so acute, so sharp, so overwhelming that nothing else can penetrate our thoughts and feelings and we are numb to all around us.

But yes, we have plenty to be grateful for...for life and for love, and if we have these, then truly we are blessed. And so we swallow the pain, we bite back the tears, we pull ourselves up, we face the world, and in so doing we learn to forgive ourselves our shortcomings, our failures, our lack of being there for others, and we try to deal with the guilt. The guilt that damns us as we struggle on each day, the guilt that would pull us back into the quicksand of flooding thoughts that drown out the good in us and tells us we have failed. The guilt, that if left unchallenged would kill our soul and take away that last lingering hope within us, that perhaps something truly good and beautiful can come from our lives.

Yes, we have plenty to be grateful for each and every day. Each day anew. Each day afresh. Each day a chance to start over. Each day to thank God for life and love. To forgive ourselves our imperfect past, and to face the future unforetold... God grant us grace to face each day with Your strength, for we cannot, dare not, will not, contemplate doing it on our own. We would fail. And surely for that gift of grace alone, if not for anything else, I am grateful. Thank you, God. For life, and for love.

Thanks for reading.

Pav