"Old of Soul" not "Young At Heart"

I am sometimes amused by friends who tell me that age is all in the mind, and that a person is as old as they think they are, and therefore, one can always remain "young at heart". This is very difficult to do if you live with chronic illness that never goes away.

Living with Crohn's Disease means many things... and one major difference that I live with compared to my friends who are well is the fact that I have difficulty absorbing adequate nutrition, and that impacts me on many levels. I smile when friends tell me that I should get out there and do so much more... I am so tired from battling Crohn's and the inevitable lack of nutrition, especially micro-nutrients like vitamins and minerals, that going out is a bit of a job, and so I only do so when I really have to be somewhere, or when I feel really well.

How will I age and grow old and keep my body in shape so that I can function well into my 70's and 80's? I really don't know. I try to do some exercise, but often times I get so exhausted. When I swim often enough to try and stay in shape, I come down with a viral infection. As the main stay of treatment for Crohn's Disease is medication that suppresses the immune system I am prey to opportunistic infections that have included shingles, ear nerve inflammation, urinary tract infection and upper and lower respiratory tract infections. Some of these infections require antibiotic treatment, and those meds keep me chained to my amenities and I stay home till I recover. 

Nutrition and exercise and restful sleep are key to staying well, and yet it is so hard to get to a place where they are working well for me. My body screams for me to rest, yet sleep doesn't come easily to me. Muscles and bones hurt. I am quickly exhausted. I choose to listen to messages my body sends me, but I am aware that my being sedentary can also lead to other problems down the road. So I must find a middle path somehow.

Aging well is not just a product of the mind. You must also have the physical ability to age well. There are things your body simply cannot do because it simply cannot. There are things you cannot do, no matter how much you might try to convince yourself that you can, or others might tell you that you can. It's hard to accept these limitations, and harder to explain them to others, but one must try.

I watch my dear husband leave home to go running, I watch him come home after running marathons, and I know he is doing what he must to age well. I feel left behind, and so inadequate because I cannot run any more. I once used to run... I ran around a lake in the middle of my Uni campus a few times a week in the cool evenings. I loved the sense that I was free as a bird. I loved pushing myself a little further each time. I was in excellent shape, and it felt good. I felt young at heart and strong, and which one of us who is healthy doesn't feel like the world is their oyster when they're 20?

Now after 15 years of Crohn's and numerous medications and doses of steroids I am out of shape, my weight fluctuates, my clothes don't fit, allergies to hair dyes mean that I have stopped dyeing my hair and I am very grey. Some days I feel ugly and I find myself tearful because I want to do so much but my body won't let me. Can I force myself mentally to do what my body can't physically? I don't think so. I've tried on occasion, only to find myself worse off physically. 

What about the "young at heart" phrase that we all toss about so candidly especially to friends who have turned 40, or 50 or 60 years old and need assurance that it's how we feel on the inside of our decaying bodies that determines how old we really are? Well, many who live with chronic illness will tell you, if they were honest about it, that deep down inside they feel tired and weary. This is not because they are melancholic by nature, or given to being pessimistic about life. It is because nothing drains the life out of you like a disease with no end in sight.

You tell yourself when you're unwell that you'll get better, and that life will be better, that good days will come, and that things will be more manageable, and you need that hope to keep going. But just when you get better and you enjoy a season of wellness, the rug's pulled out from under your feet, and the cycle starts all over again... and again... and again. And even the stoutest, strongest, most valiant of hearts feels despair as time wears on. It's inevitable. A recurring cycle of wellness and illness with no end in sight, coupled with poor nutrition, and possibly poor sleep means that one is always putting out fires and never really planning ahead. Never really thinking about aging gracefully because the disease won't allow you to do so. Never really feeling "young at heart" because you're exhausted all the time, and often there are just too many demands on one's time anyway to really prioritize feeling "young at heart"...whatever that phrase really means. :)

I don't feel "young at heart", I feel "old of soul" these days. I can't help it. I've battled Crohn's for 15 years, I want it to stop, but I know it won't. I want to be free. I feel like a conscripted soldier in some strange battle I don't want to fight, and I can never leave the battle field for long. I think I'm winning and I take refuge, and then I'm called out to battle again, and I think I'm winning, and I rest, and then it's to battle again. My heart knows what is happening, what is to come, and also it knows what I must do. 

I must live in hope. That is what I must do. Hope is the only thing that will not die in this situation. When I am well I overdose on storing up hope in my heart. Maybe then, maybe for a short season, I feel a touch of "young at heart" fluttering in my soul, though when the disease flares again or some part of me fails to work properly the "crash" from hope to despair seems so steep... but I don't linger there for long. I have to pull myself up and keep going.

I keep going because life is beautiful. It has so much that is lovely in it. My husband, our 4 children, our home,  our shared lives together. There is beauty, there is love. That alone is worth so much that I don't allow despair to overcome me. I simply choose to realize and accept that I live with an incurable disease, that I am not aging gracefully, and that I am not "young at heart". I am old before my time, I am "Old of Soul". But that's okay, really.

Accepting one's limitations in life isn't an act of giving up hope, it's a step in loving oneself despite all that continues to happen. Some times I need to remind myself to keep loving me... whatever comes, whatever happens, I promise to love myself. Even the oldest of souls deserves that much :)

Thanks for reading.

Pav

There Is Only One You

Today I thought about what it meant to be me, and I realized that the overwhelming truth of who I am can be expressed in the idea that there is only one me. Perhaps that is for the better! Imagine a squadron or a flock of me... how exhausting it would be for those who love me to find so many of me needing attention, and how exasperating for those who dislike me... oh my!

The truth is there is at any one given point in time and space only one version of any one of us. Yes, truly, There Is Only One You, and Only One Me. No matter where we go, no matter what we do, no matter what we might think of ourselves, there exists only the one version of each of us. I asked myself what that might mean for me, living as I do with illness. 

Illness isn't something that is without variability, in fact many idiopathic illnesses have lives of their own, unraveling over time in the lives of individuals affecting two people with the same illness in very different ways. Two people with very similar backgrounds and lives might find themselves with Crohn's but the illness would not manifest itself in the same way in both their lives. Each individual is already unique in their own special way... add to that a disease that creates extra layers of uniqueness, and the individual is even more different, even more unusual, yet not quite special, as no one really wants to consider that having a disease could make you special. It doesn't really, it just makes you different.

That difference is to be thought of as being something precious, though, because it is a part of who you are. It sets you apart from others, a lot like the other things in your life would. Your experiences in life make you who you are to a large degree, and illness is very much experiential. It makes your life uniquely yours. It is only because we do not see that everyone else is also different in and of themselves that we despise the "different-ness" in ourselves. We imagine that all around us people are perfect and happy, and that we cannot be so because our lives are broken in some way by chronic illness. And yet if we were to sit and talk to these seemingly perfectly happy people we might find that they too have some pain in their lives, maybe not of the body but in their soul. They too may have something that they struggle with everyday of their lives. They also may be trying to keep up the facade of being in control but in all honesty, many of us have facades that we maintain so as to manage life on a daily basis. Who knows what lurks behind anybody's mask? Pain? Hurt? Loneliness? Sadness? Despair? We wonder why people try so hard to keep these masks on, but we know that this is the way of the world. No one can lower their mask and show their true selves to us unless they trust us enough to do so. And sometimes we ourselves do not know if we can take the brutal honesty that the other shows us, neither do we know if we have it in us to respond in an appropriate manner.

And so we all tiptoe around each other, dancing on edge, to a very old tune that dictates our movements. I show you a little bit of who I really am, perhaps you respond in like manner. We meet, two souls, passing by each other in life, exposed for who we really are. Trust is built. And somehow, something is said or done, and trust is broken. Then rebuilt again, then broken once more. And over and over goes this dance. But each time we keep coming back to rebuild the trust because we are driven by our humanity. We know instinctively that it is the right thing to do. We recognize this deep in our souls. We dance this dance back and forth with many people in our lives. The ones who mean a lot to us. The friends who can hurt us because we love them. The ones we cherish and want to keep close in our lives. The ones to whom we say, I know there is only one me, but a greater knowledge and a deeper truth I have found is that There Is Only One You. No matter what shape I am in, no matter what my life with illness may hold, stay in my life. I am more than just myself when I am with you, I am much, much, more. Together, There Will be Only One "Us".

Thanks for reading,

pav

Alone, But Not Quite Alone

Last weekend I met up with a newly formed group of patients and parents of young patients with Crohn's and Colitis. The Crohn's and Colitis Society of Singapore was formed in May 2012, and is slowly growing. I was privileged to meet with folks and listen to their stories and share my own. We also had a lovely session of Art Therapy which was fun and enlightening.

As always, meeting with other patients reminds me that I am not alone in my journey, and neither are these patients that I met. We are journeying together, yet we are essentially alone to some extent. The nature of both Crohn's and Colitis is such that as idiopathic diseases they practically have minds of their own. They manifest differently in different individuals and the way the disease progresses in me will differ from another patient's experience. What works for me may not work for them. Medications that helped me may worsen someone else's condition, or not, but that is something nobody can predict. In essence, therefore, my experience, while useful in helping others understand what they go through is always simply that - My Experience. It can never become someone else's neither can I take on the experiences of others as my own.

Does that make the sharing of experiences useless? No, it doesn't. It is in fact a very useful endeavour. Useful because newly diagnosed patients can find hope in those who are doing well and living life as fully as possible. Useful because those of us who have mild to moderate disease can find reason to be thankful that we are spared the severity of disease some others face. Useful because parents whose children have disease can see that patients can be happy, and live life, hold a job, get married, have children... in short, live their lives There is hope, and hope is so important to keeping going, especially when things are difficult.

For this reason I keep going back to meetings of patients whether in organized formal groups or small settings or informal tea sessions in a cafe. It is not because I feel I desperately need to connect with other patients... for some reason, perhaps because I have been ill for 15 years, I have reached a state where I do not desperately need assurance that all will be well, and I have accepted the disease for what it is and my life goes on regardless. I meet up with patients because I sense there are many out there who need assurance. There are many out there who feel alone. There are many for whom this loneliness is overwhelming, and frighteningly so.

It no longer overwhelms me, so perhaps I can help others who are lonely and afraid of that loneliness. I know deep down inside my soul that I am essentially alone in my journey. On some intrinsically deep level I understand that no one can fully enter into my pain or my sufferings or my mind or my heart as I journey with Crohn's. I know my husband cannot fully understand, neither can my children, my mother or my siblings. No one can. But that doesn't leave me despairing. It's just a fact of life. Yes, I am alone, but I know I am not quite alone. Because other patients who suffer endure experiences that approximate mine. Sure they're not the exact same experiences but they are similar enough to enable them to understand, and that understanding is what binds us together in mutual support.

So when one young man shared about a perianal fistula, I remembered my own surgery for one. When two young men spoke of going on liquid diets for 2-3 months I remembered going without food for weeks on end too. When someone shared about surgery I remembered my own experience. Tears filled my eyes... I knew what he had experienced. When parents spoke of their children going without food and drinking Modulen to go into remission from Crohn's I knew exactly what they meant. I knew the tears they must have shed, because I too shed many. I knew the joy they must have felt when their child was declared well and able to eat, because I too had rejoiced with my son. I know the dread and fear they hold unspoken in their hearts that the disease will return because I too live with that fear.

It is this ability to empathize that is born out of our sufferings that keeps me going to support group encounters. If another lonely soul knows someone understands then that is enough. The meeting of mutually suffering souls happens in such moments, and is beautiful. In fact I sometimes think there is something divine in it. I don't know why. Perhaps because the meeting is one of souls, and that always has a touch of the divine about it. That point in time when you look into someone's eyes, and you know that they know that you understand, and that they are grateful you do... that moment is magical, at least it is for me. Hopefully in time patients who feel afraid to be alone will also come to a place of peace and a deeper understanding of their own journey, to a place of acceptance that while they are alone on some level, they are not fully alone.

I am grateful I met some lovely people who are reaching out to others with Crohn's and Colitis. I am grateful that in the meeting of hands of greeting and the exchange of words of introduction, in the process of sharing and doing art therapy together, some meeting of souls occurred, at least for me. Kindred spirits, mutually suffering souls, call it what you may. I am alone, but not quite alone, and that gives me hope.

Thanks for reading!

Pavitar
ps If you would like more information about the Crohn's and Colitis Society of Singapore do email me. I'd be happy to put you in touch with the folks that run it.

For My Son Sach on His 15th Birthday

My Dearest Son Sach,

You're 15 years old today, and I am so happy to see you growing up and becoming a truly lovely young man. Of all the many, many good things I have in my life, I count my children as my greatest blessings.  They are a gift to me from God. I sometimes wonder what I ever did in my life to deserve such lovely gifts, but then I remember that gifts aren't earned, they are given freely, and for some reason God saw fit to give you to me.

What a wonderful gift you are to me. I am so grateful for your kindly ways and loving heart. I know it isn't easy being a teenager, and some days you feel like you really want to be left alone and the world encroaches into your space and everything is annoying (oh wait, that's how I feel!!) but thank you for the kindness you show me and everyone else at home with your patience and understanding. It is very much appreciated. You have a way about you that naturally draws people to you. While you may not perceive yourself to be a people person, you have a talent for working well with others and helping those who need assistance. I see that in you all the time.

When you were very young you were always trying to make your voice heard. It seemed even then that your older brother spoke for you and so you eventually became quite comfortable being fairly quiet. It was only when you had something truly important to say that you spoke up, and people listened because you made sense. I hope that you will continue to find your voice and make your opinions heard over all the noise that exists around you. Certainly our home can be a circus with all four of you speaking up, and often I notice that you stay quiet. Still waters run deep... I know that is true with you. Your mind is always busy working and I know you have ideas and opinions on many things. Speak up, I love hearing you share your ideas. They are a window into your soul, and I know deep inside you is a fascinating logical thinker who is a very intelligent person and for whom much of the noise around him is rather pointless and immature. Someday we will all grow up together, I promise you :)

I look back at your infancy and early childhood and I remember that those were difficult times for me trying to manage two young boys and failing health at the same time. It was when you were very young that I was finally diagnosed with Crohn's after 3 years of symptoms. I remember how tired I was and how little energy I had and yet I wanted to do so much with my two little boys and I always felt that somehow I wasn't giving you enough time and attention. I think all mothers who have more than one child feel this way. I look back and sometimes I wish things had been different with my health and I had done so much more for you and with you.

I don't know why illness came into my life and robbed me of the best years of my life, but I do know that even though I was unwell, and had many ups and downs, at the end of the day it was always a joy having you and your siblings in my life. I felt guilt ridden then, and to some extent I still do now.  But illness is out of my control, and no one can predict how things will unfold in the future, and so I have learnt to be more accepting of the way things are, and to be more forgiving of my own failings.

I look at you now and I am amazed at the person you are and you are becoming over time, and I know that God has been at work in all our lives. My own weakness has been a testament to His loving kindness and care in our lives. I am grateful that while on many occasions I was in hospital or just resting at home your father was there, and with his love and guidance also you have grown up to be a sweet and loving person. It gives me great comfort to know that your life thus far, and how you grow further, is not entirely dependent on me. I am relieved that despite my limitations you are doing well.

No matter where you go in life, no matter what you do, no matter who or what you become, I will always love you. You are mine, a gift from God and yet you are not mine to hold on to forever. I must let you go to find your own way in life. Always remember that who you are is enough. You do not need to be as sociable as your older brother or as chatty as your younger sister, who you are is who you are. And you are wonderful. Within you lies a deep thinking person who will bloom in his own time and make his own mark on this world. Follow your own path, make your own way in life. I expect nothing more nor less from you.

Do stay loving and patient and kind, for these are the hallmarks of a real man. And don't forget how loved you are, and how much joy you have brought me over the past 15 years that I have had the privilege to be your mother. I look forward to continuing on our journey together, and come what may, I will always be here for you. I love you, Sach. Always have, always will.

With much love and affection,
Mum

Sharing Joys, Sharing Sorrows

Living through 16 years of symptoms and almost 13 years of being diagnosed with Crohn's I have come to treasure the true friends I have that have journeyed with me along the way. There are few true friends in my life, and that is how it should be. I am not saddened by the fact that many do not know how to journey with me, or find my life too messy and full of upheaval and too much drama for their liking. I am so happy that I have my friends who do seem to have learnt to journey by my side even as I have learnt to journey, and for those who have stood by me and helped me keep hope alive in my heart. These are the angels of God, sent in the likeness of man, who come to me in my darkest hour, and shine the light of their love into my life. Those who somehow know when to say or do the right thing, when not to speak or do, and simply be, and when to leave me alone... even if not completely knowing, they are the ones who are willing to be wrong and swallow their own hurt and pride should they be mistaken in their dealings with me... they must be angels, or at the very least angelic souls in mortal vessels.

These are the people who are happy being themselves and so can be so much more for others. The kind of person who is secure in the knowledge of who they are, and what they can be, should they step out beyond themselves and be something more to someone else. These are the ones who share your joys, and also share in your sorrows. They are happy for the small things you accomplish in your life...like managing a liquid only diet for as long as necessary without falling off the wagon, for example. They are happy for the bigger things you accomplish in your life, like working on your long term goals, or learning to paint, or play the cello. They are happy for the huge, most meaningful accomplishment of all... raising 4 children despite chronic illness, though time will tell how good a job that's been. They are happy your family is happy, and doing well, they are genuinely glad for you and even if they are lacking in their own lives, even if there is something missing in their hearts, they begrudge you not your joys. This is a true friend. This is the person you hold close to your heart and say, "Thank you, thank you for your generosity of heart in loving me". 

This is the friend who, because I know he or she can hold my joys within their heart without heartbreak... this is the same person with whom I share my deepest sorrows. This is the same person who is deserving of that privilege, and yes, it is indeed a privilege, to enter into the sufferings of another. It is no light thing to have someone open up their hearts to you or pour out their tears before you as they share their difficulties, in fact, it can even be a burden to some. The true friend, the one who sticks by you no matter what, may view it as burdensome, but carries the weight of it anyway, so as to lighten your own load. 

Not all people will share in your joys, and certainly not all will share in your sorrows. Sadly, there are some people who cannot share in your joys but will happily rejoice in your sorrows, for their hearts find it easier to do so. Do not share with them the hardships or pains you face, for they will feed on your sorrows only to enrich their dislike or hatred of you. These are not friends at all. They are not quite enemies, either, they exist in a state of limbo. Perhaps some day they will find it in their hearts to be a true friend... until then they are best left alone. The knowledge that not everyone means us well in life is painful, even heartbreaking, but it is very much a part of growing up, and it's never too late to grow up, even at 45. This truth has led me to cherish even more the true friends I have who rejoice with me in my times of gladness, and commiserate with me when I am down. Perhaps chronic illness has been useful in that it has helped me sieve out my true friends. Certainly, because of the never ending constancy of chronic illness in my life it has become imperative to me to seek out my true friends, as their genuine love and care is precisely what is needed rather that the stress, despair, and heartbreak that those who cannot share in my happiness but rejoice in my sorrows bring with them.

Someday, when my true friend needs a listening ear, and someone to help lessen the load, I too will listen, cry alongside them, say a prayer for them, do something kind for them, whatever it takes to come to that place where the message is sent to say, "I love you, my friend. I have shared in your joys, I share also in your sorrows. You are not alone". I hope that I too can be a friend who shares in both the joys and sorrows that all of us encounter in life. There is no escape. Not one of us is to be spared. Our joys are easy for us to endure, in fact they are welcome no matter what they may be. It is the sorrows that take us by surprise, that assail us when we least expect them, that offend us by their very temerity and intrusion into our lives, that force us time and time again to reassess the priorities in our lives, to rediscover who we really are, to decide who we want to be... life with chronic illness is a deep, deep sorrow that never ends. 

It eats away at the soul, it saddens the heart, it embitters the spirit, it kills you slowly on the inside... if you let it. One must not let it. One must fight it everyday. One must surround one's self with people who will help in this battle. Find the true friends in your life. They aren't so hard to find, really. They are the ones who genuinely share in your joys. They have the largeness of spirit to bear your anguish and grief and sorrows when that time comes. Cherish them always. Seek them out often, Love them deeply. And yes, share in their joys, and in their sorrows also. Relish the sweetness of friendship that is true. It is the very love of God made real in our lives.

Thanks for reading,

Pav

"Mea Culpa" : Through My Own Fault.

I can hear again. Fully, in both ears. Last week I wrote about how I lost my hearing partially in one ear overnight. Today I am grateful to be able to write that I have regained it. The doctor said today that it is uncommon to find such complete restoration, and that it was good I went to see him so quickly. I am thankful the triple therapy of steroids, antibiotics and antivirals worked. I am so relieved.

I am relieved for a few reasons. Of course, it's lovely to have complete hearing. I will never take that for granted again. But also, I am relieved that I am done with the rather intense triple meds regime for a week. They helped, but they caused a lot of other problems for me. I am still reeling from some of these. Steroids and I have a history already with the Crohn's and I had just weaned off a few months of prednisone. I knew I had no choice as I was put on 40 mgs for 3 days, then 30 mgs for 3 days, and then 20 mgs for 2 days and then zero by the ENT doctor. Soon I could feel my bones hurting, I could feel myself becoming very agitated, I was absolutely ravenous, and bloated and my heart raced, and I found it hard to sleep. The day I had zero steroids I completely fell apart. I couldn't stop crying. I cried for hours. I was upset. Possibly even beyond upset. I hated my life, I wished it was over. I had fought bitterly with my noisy, loud, saxophone playing husband a few days before and I plunged into a state beyond despair.

I struggled to tell myself that I wasn't myself. I was on very powerful meds that altered many of the ways I felt and that must have had an effect on how I dealt with the world. Surely I wasn't some kind of Jekyll and Hyde or some bipolar beast who could fall apart so spectacularly and then appear so sane so soon after. But that's what began to happen to me on these meds. In addition to steroids I was on Klacid and Acyclovir, all in order to quieten nerve inflammation and restore hearing. I was desperate to do what I could to help myself, so I followed the doctor's orders. I took my meds as best as I could, even having the Acyclovir 5 times a day, as late as 1am in the morning. I did what I could, but at the same time I was slipping away into something horrible and terrible.

I got upset about noise, especially loud saxophone playing and I argued, and because I was unwell I felt I was right to want some peace and quiet, and to have my feelings understood. Because I stood on the edge of the precipice of possible deafness I deserved to be listened to and to be given space and time to heal and I felt entitled to that because I was the one who had sustained nerve damage. Not you. Me. Me. Me.

I put myself first. And as I did that I slid so far down that slippery slope that I might have drowned in the quicksand and quagmire of despair that grabbed my ankles and refused to let me go... except that I spoke to  a friend, and finally let everything come out. It all came flooding out of my soul. Not only was it cathartic, it was also very necessary so I could make amends, break free from old patterns of behaviour and learn to cope again with illness both chronic and acute, hate myself so much less and love myself all the more and at the same time seek to love others more purely. What a tall order! But life is full of these moments when light shines in on our darkness, and we see what we really are, and we know we have reached a place where action is needed and if we do not act we miss a key place and point in our lives. I am so glad I let the light in. It was painful, but necessary, as many pains are in life.

No one else can walk my path, no matter how hard they try. No one else can enter into my heart and mind and know what I feel. The Divine can, but I speak of those made in His image, and yet very much nothing like Him. Mere mortal beings. My husband cannot fully comprehend, neither can my children. They can try to empathise and sympathise, if at all, but beyond that there is nothing more. I cannot expect them to understand, they just do not have the capacity. While that is heartbreaking, it also shifts the responsibility of managing a chronic illness well almost entirely onto my shoulders. 

I must live with this knowledge that I journey alone in the innermost deepest recesses of my heart. I must not be afraid. I must not feel unloved. I must not give up. All of us journey alone. Somewhere along the way we meet those who comprehend, and we move along, and meet others again, and move along as the tides of time push us on our way. That's okay. That's life. That's sufficient for my soul. I will not and must no longer expect those nearest and dearest to me to know what I need, to give me what I perceive to be my right... therein lies the death knell of love. I cannot and will not let love die in my heart.

My soul was laid bare in a dark hour, and it showed me how little I really know of my own self. I will learn. I will change. I will enlarge my heart and life and I will abdicate the throne of my heart. Not I, God, but Thee reign. Teach me to love, for love's sake, not mine.

Today I know my hearing is restored. I also know my soul is healed. It’s an ongoing process, one that requires that I revisit these key moments and lessons, even if I feel it is unfair, or burdensome to a chronically ill person. There is hope. 

Thanks for reading,

Pav

Ps. Almost a year after this, in May 2013, I broke my left ankle, and was in a wheelchair, unable to walk post surgery. My marriage ended after an argument about a cup of tea which I needed help getting. I think this post reflects one person’s attempt to bridge a gap with very little reciprocity from the other. “Mea culpa” was me acknowledging my struggles, and my trying to make things work. There was never an acknowledgement of difficulties or a conversation in which we spoke openly of our struggles. I was anxious, the other avoidant. And so love died in one heart while mine tried to keep it alive, until eventually, it found no need to any longer. Those who do not understand cannot empathise and they barely sympathise. I should have known better than to ask anything of them. If I cannot walk to make my own cup of tea, I’m happy to go without. :) 

BEYOND MY BODY. A Poem

BEYOND MY BODY


One thing starts and then another follows
One thing began bringing its sorrows.
Over years the body, mind and soul
Think that they understand the whole,
But just when all seems quietly still
In comes another that makes you ill.


Up and down, you ride up and down.
You cry like a mourner, laugh like a clown.
Deep in your heart pain lurks unseen.
Hang on to the rollercoaster, it's nasty mean.
How do you manage, I never really do.
I just hope to survive, to myself be true.


What was I before all this befell me?
Was it so long ago I walked disease free?
I try hard to recall, I believe I have forgotten
And that's okay, for that me will never return.
In my mind's eye, in the quiet voice of my heart
I seek to understand that I stand apart.


I am not one with the girl of my past
Clueless to what the future brings at last.
I do know that today lies in my hand clasped
Clued in by painful lessons I have grasped.


Pain and loss, hurt and grief,
Sneak in to steal like a thief.
Let not my heart cave in to despair,
I remind myself that death lies there.


Keep hope alive in my soul,
It matters not my body's unwhole.
For beyond the grasp of life's uncertainties
Lies one thing sure yet full of mysteries.


I know not why I suffer in life,
I know not why there is strife.
Yet one thing sure I can and must proclaim,
God loves me still, He knows my name.


And if I know not why now, why me
It's really alright if it's a mystery.
I hang on to the hope I have not in vain,
Some day I'll be completely whole again.


Is that at death when I meet my Creator,
When I see His face, feel His embrace,
And all doubts, questions, fears and tears
Will fall away in the love of His gaze?


I pray 'tis so, I cling to my hope
It helps me survive, helps me cope.
For if mine eyes were set only here on this earth,
I should perish bitterly not knowing my worth.


I am not defined by grief, hurt and pain
I will not forget my true self again
I shall to myself be always kind,
Till it lies enshrined in both heart and mind.


I am more than the sum of my bodily parts,
I am a soul traveling in an imperfect vessel.
Some day when my journey's done I shall be set free.
The real essential, beautiful me.


Pavitar Kaur Gill
31st May 2012

What if you woke up one morning...

What if you woke up one morning with a ringing and buzzing in your right ear and in 24 hours or so you discovered that somehow your auditory nerve in your ear was inflamed, half of your hearing is gone in that ear, and you have to start a therapy of 3 powerful drugs to save your nerve and hopefully restore hearing?

It just happened to me. Two days ago.

I kid you not. I sat in the audio test lab reception area in a daze after an audio test yesterday and its results were explained to me. My left ear hears perfectly, but my right ear has lost 50-55 percent of its ability to hear. Just like that. Overnight. My ENT doctor sent me to the audio test after a scope showed no physical defects. After the test he said it had to be an inflamed nerve and started me immediately on 40 mgs of steroids to reduce inflammation, an antibiotic, Klacid, in case of some bacterial element at play, and an antiviral, Acyclovir, as the herpes zoster virus that causes chicken pox and shingles can affect nerves. So I am drugged up and hopefully it isn't too late to save my hearing.

I can still hear out of my left ear quite well. Strangely all noise seems exaggerated, I think because my ears and my brain haven't compensated for the loss yet. I don't mind too much at present. It just means my body hasn't gotten used to hearing loss, and I don't want it to get too cozy with the idea. Fight it!

Fight it? How can I fight anything? I have been on Humira for Crohn's Disease and it has helped but at the same time it has had to lower my immunity in the process. I am fair game to opportunistic infections. A virus that in a healthy person might just be a mild cold could do more serious harm to me. Apparently this might have just happened.

Shortly after I began Humira last year I had shingles on the side of my upper trunk. No nerve damage, not too much pain but a very tender patch of typical shingles pustules. Could this ear problem be a recurrence of some herpes zoster attack? Why on my ear nerve? Who knows? There are no answers to the why's and wherefore's. Just a desperate need to cope with whatever is on my plate yet again.

What is on my plate? I don't know for sure yet and that makes coping rather tricky. I just have to live one day at a time. I am doing my utmost to get better. The ENT doctor said the bad news was what has happened to my auditory nerve but the good news is that I went very early to see him and this will help greatly. I hope so. I really, really hope so.

I remember thinking that at least I could still see. My optic nerves are pretty okay. Some days my vision is blurry but I cope. Often I am very sensitive to bright light. I avoid going out in the sun. My vision is good most days and I am grateful. Sitting alone after the audio test I felt tears fill my eyes. But the thought came to me that I could still see. Yes, I can and talk, and smell, and feel, and walk, and think and put thoughts into action. I can do so much! There is hope!

I don't believe in coincidences. As I sat there in the audio lab reception area, waiting for my test, I was seated with a family. One son was deaf and had speaking difficulties. He was playing a game on an iPad with his younger brother, and kept clapping loudly when his brother did well. I found the clapping too loud, and annoying. But I said and did nothing beyond an occasional look. His mother was with him, and as a Mum myself I know how horrible it is to have others harshly judge our kids. And he had serious medical issues. Far more serious than mine. He was born with congenital defects and had never heard a single sound, or he had some level of severely impaired hearing. The audio test lab was a place he came to often, I could tell. I tried to feel sympathetic but not obviously so... it was on the inside that I had to tell myself to stay calm in the face of a few claps of obvious joy. He was coping, the best way he could. I gave him that space. I hope he can hear with all the technological aid available to us, and that he grows up to live a happy and fruitful life.

The ENT doctor that requested my audio test had written down on the request form that I was to be tested as a candidate for a cochlear implant. I didn't know what that meant, thinking simplistically that as an ENT surgeon he might have been a little trigger happy to get me on the road to surgery. The cynic in me was quietened when the technicians discussed it and one of them said it just meant an audio test for hearing ability and impairment. Oh, okay. Afterwards I read up about cochlear implants otherwise known as a "bionic ear". I remembered Jaime Summers, the Bionic Woman from my childhood tv viewing. She had a bionic ear. haha! If my hearing doesn't come back on it's own I have options. It's not the end of the world. I must remain positive and hopeful. I have so much to be grateful for, and indeed, I am very thankful. That leads to contentment, and that brings peace. I need peace, deep in my soul otherwise I cannot live with myself and I can't imagine anyone else wanting to live with me. By choice, that it is! My dear husband and family don't have too much choice in the matter. Not really. I am, thankfully, and very contentedly married to a sweet man who takes his marriage vows very seriously, and deep down inside me I know my kids are happy, so they're here for the long haul. I, too, must be present for the long haul. And in a state worthy of them. I try. I try very hard indeed.

But yes, what if one morning you woke up and something failed to work in your body? Some part of you sustained an inexplicable impairment. Somehow in the middle of the night, or possibly in the preceding day, some sinister agent got into your system and played havoc resulting in your not functioning fully and normally? What would you feel, how would you react, what would you do, how would you cope? One never knows till one walks that path. I just did. It's hard work. I hope it'll be a long, long time before this happens to me again. Hopefully it never will.

At first I was annoyed by the noise, then worried because it persisted all day, troubled next that I would never sleep peacefully again, anxious to get it sorted out soonest, shocked to hear the news (with my good ear, no less!) and then deeply saddened to know what was happening.

Have I moved beyond "deeply saddened"? No, I haven't. It's a bit too soon perhaps. I find myself tearful from time to time. I feel overwhelmed by the effects of the triple therapy on my body, especially the watery diarrhoeas caused by the antibiotics, and I always feel depressed when I have to take antibiotics . I think every good thing is drained from me. It exhausts me. It takes the joy out of me. I spend all day in my room running to the toilet when I have to, feeling sore, and tired, and so totally and utterly fed up. Despair fills me, tears well up, I cry, I feel better. This is a cycle that has occurred all day today. But I tell myself I have a week's medications and then I retest my hearing next Thursday. By then if there is to be healing it would have taken place. I will know. I will find my feet, I will take it all in my stride. I must.

I am reminded never to take things for granted again. Each part of my body, each function, each special role is a gift to be enjoyed, to be cherished, to be looked after to the best of my ability. I don't know what I could have done differently to preserve my auditory nerve. I am not fond of loud music, if anything I have heightened sensitivity to noise. But this came out of nowhere. And so while I didn't have a chance to better manage my nerves or protect my hearing or fend off viruses or whatever little I could have done... I have to say I miss my hearing in my right ear. I can barely hear anything in the normal range with it. I miss it. Very much.

Yes, it's not my fault. Maybe I can blame Humira, I really don't know. It isn't important in the big picture. Who, what, where, how, why... no answers are forthcoming. Only time will tell if my hearing will be restored. Come what may I will cope, life will go on, I will be here, as always. As I have said elsewhere in my blog, I am not the sum total of my bodily parts, I am so much more. Take away my senses, my body if you must... I am a soul, trapped in an imperfect vessel. Someday I will be free. But not for a long while yet.

Thanks for journeying with me, and for reading.

Pav

Painfully Human

Pain. Bone pain. Joints hurt too. Muscles ache in tandem. Pain is my constant companion. 


Fragile. Raw nerves. I feel intensely. Everything affects me deeply. I am human after all. 


Upset. Easily rattled. Walking is difficult. Pain crippling yet manageable. Often it comes, goes, returns. 


Peace. Desperately needed. The soul's balm. A gift from God. Indeed, I am painfully human. 



Thanks for reading,


Pav

The Sublime Strength of a Simple Smile

For the past two weeks I have woken up and found myself in tears shortly after I realize that my body is strangely glued to my bed. Glued in the sense that I find it incredibly hard to move. Muscles are sore, bones hurt, and I have had flu like symptoms for awhile too. Every morning I get out of bed just to eat a couple of slices of bread with tea and then take my medicines and I wait for their magical effect. Antihistamines and pain relief meds keep me going through the day. I don't feel up to going anywhere or doing anything and I am beginning to feel like a social recluse.

Happily though, in the midst of all this, my blood work shows that the Crohn's is under control. Humira is helping me and I am so glad for that. But Humira also causes side effects such as flu-like symptoms etc. So I wonder if I am just having a prolonged flu or if I am having a reaction to the Humira. My doctor says that my liver enzymes are on the rise and if they continue to rise I may have to discontinue Humira. I feel deep despair at the thought because I have tried everything else there is and Humira actually works for me. One step at a time, I guess. Time enough to see how things are in due course. No point worrying away now, best to save some worrying for later :)

Tears are so close that I cry a few times a day. I feel fragile. Very fragile. Small things cause me to cry. Something sad on tv and I cry. Some sad news in the papers, and I cry. One of my kids is gruff with me and I feel it in my heart, and I cry. My dear hubby says something sweet to me, and... you guessed it, I cry. I am crying as I write this! Oh dear me. Reduced to tears just by life itself. How can this be? I do know that the flu can be depressive. I am sure on some physiological level that is borne out somehow. Yah, like maybe dopamine levels are severely reduced because white blood cells need it to stay happy while fighting off infections! (what would I know? Nothing much obviously!)

I try my very best to be cheerful when the kids come home. I dish out hugs and smiles aplenty and listen to the debriefing of the day's events from the more loquacious younger ones and squeeze out monosyllabic details from the reticent older kids. I tell myself that I am well, it's just the flu, I am not in any major pain, I will make their time at home as pleasant as possible, and so I smile. Not incessantly like the Cheshire Cat or my kids would be worried for me, but just small smiles here and there to convey joy, love, acceptance, understanding etc. In fact a whole myriad of emotions and states can be conveyed by a simple smile.

There are so many cliches about smiles. I don't want to repeat them here. But I do want to acknowledge that smiles are powerful. There is latent strength in a smile. It blesses the one who smiles and the recipient of the smile. It empowers the smiler to rise above their situation and to be more than what they feel. I find that when I tell myself I have to be pleasant and I smile even if I don't feel like smiling, I ultimately feel more pleasant myself. In fact, smiling is to be recommended especially when you don't feel like smiling because of its transforming power. Even if the smile doesn't quite reach your eyes, it's getting there slowly. It's almost a process, if you like. Eventually, with sufficient usage, the smile will reflect a sense of wholeheartedness, starting from the heart and radiating through the eyes. My mantra through this flu-like phase is to "Cry Less, Smile More". It's retraining the heart and the eyes and basically the mind to get through some tough times with the twofold methods available to me... Crying and Laughing (Smiling gone crazy). I hope to cry a lot less, and smile and laugh so much more.

Of course, it's very hard, in fact, it's positively impossible to smile when you are in a lot of pain. I don't remember smiling when I have been in the throes of a terrible painful episode of colitis... in fact all I have ever wanted to do was to curl up and cry and be left alone and not have to talk to a single soul. Yes, sometimes pain is so overwhelming the body cannot bring itself to do anything except curl up and try to get through the pain. Smiling then would be ridiculous as well as impossible, really. No, there are moments of intense pain and grief etc when smiling is out of place indeed.

But on average, my life is not filled with intense pain or grief. It's filled with many good moments and wonderful things. Yes, this wretched flu has got me down. Maybe it's here to stay as long as I'm on Humira. Maybe not. But I can smile now. I must smile now. For my own soul. So I can be all I need to be to the ones who depend on me but also so I can be a better me. I am so much nicer when I smile. I know I am and folks have said I have a lovely smile. I believe them :) Anyway, all those muscles droop and make you look jowly and old if you don't use them and smile enough. Sometimes you look at photos of older people and you can tell if they've been happy by the look in their eyes and the lines on their faces. I want to grow old with a happy face. I want people to look at my photo and say,"Ahh, there's a face that shows she was happy. All those smiling lines and crow's feet, and that irrepressible twinkle in her eye!". Either that or they will say "What a grouch!". Oooh, I best get working on those smiling muscles. I'll lose them if I don't use them!

Smile so I can be transformed on the inside, smile so I can age well on the outside. Smiling is good for my body and my soul. That's what a simple smile can do. Here's sending you a smile today. Send it on to someone who needs it. Bless, and be blessed!

Thanks for reading,

Pav

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