Monday, April 4, 2011

The Struggle

Sometimes the words seem to come at 100 miles an hour at others they are a dribble, a real strive in fact.

When I originally began blogging in October I had so much on my mind...just so much. It wasn’t the normal kind of lifestyle “stuff”, I’m talking more in terms of “
baggage” or unprocessed mess in my mind. So much of it was diabetes related. It related to complications that have and still do rack my body, in addition to the added mental stress of a manually operated pancreas. I arrived in the DOC a complete package of …..of…...need.

I understand that some folk have an almost superhuman ability to overcome adversity, whose sense of optimism (or whatever else) sees them push through at any cost. I am unfortunately not one of those people. For me things tend to move slowly. Unlike the words of a blog post which can sometimes roll of the mind, I am very slow at making headway into long standing and difficult issues. In truth sometimes it is hard to see the forest for the trees and progress is very hard to notice.
Reflecting on a whirlwind six months I am happy to announce that I can see some movement. It is patchy, inconsistent and unpredictable but there is some movement. The emotional dark clouds of diabetes that brought me on line have shown some signs of dissipating but I am all to aware that the wounded dog is often more dangerous than the healthy one. I remain cautious and guarded...uncertain I guess

I am amazed at how so many wonderful people in the DOC have accepted me. In stark contrast to my home environment, I am at my most normal being who I am here...diabetic. I appreciate that the illness is not meant to be definitive but I lived through a long period of denial and found that so much more destructive. The feeling of belonging and connection is, in all honesty, irreplaceable. It is the cool sea breeze after a hot summers day and the last quarter come from behind win from my favourite sports team.

I have posted before about how complications skew my perspective. I feel like I let the team down in a sense by having so many things wrong. I can run great BGs yet the issues remain, worse still I can have body and BG issues running concurrently. Growing up I was always one of the “good” kids in class, I would never have dreamed that by my mid thirties my body would be such a mess BUT those are the facts, now I am trying to move beyond them. I am placing my marker flag down and taking things one yard at a time….sometimes the whole ten is just too far ahead.

For now I am celebrating the great people of the DOC. I am accepting the inconsistencies of diabetes and struggling along with my less than perfect body. I am learning to take my eyes off the things I cannot change and just enjoy what remains, great people, amazing stories and a healthy serving of inspiration.

The struggle goes on but now it is not alone. It is struggle with purpose...struggle to get through to another day to read another story. To discover how my friends are faring, to read of their victories with diabetes and of their struggles, to feel inspired, to feel the heartbreak but most of all to feel the connection.

The scars that bind

The moments seem to come and go with constant regularity of late. I feel on the verge of making some big decisions and I back away, sometimes slowly, sometimes even unwillingly but nonetheless back away. A step at a time, fast enough to not have to reconsider but slow enough to deceive myself that I never really reached a crossroad.

The baggage is unmistakable to me and I am masterful at hiding it. I dust the shelves to rid my mind of the memories, I sweep things under the carpet, I lock more skeletons in the closet but still they appear. I have “grown” to both expect and loathe their company.

Finding words to lift and inspire when everything seems to be going wrong is never an easy thing to do. I am the first to crawl deeper under the blankets and hide. If I am not hiding well you might find me running...probably sprinting in fact, doing all I can to escape. Familiarity has made me a little numb to be truthful. I learn to live with unresolved issues and problems. I move and shift them around just enough to prevent them collapsing...for one more day. If I just inch that to this side, move this over here, ignore that nightmare low, disregard that unflinching high then I will get through until tomorrow.

If it’s not life in general, it is diabetes, if not diabetes it is life in general. Problems, mistakes, miscalculations, anger, rage and guilt. Bitterness, blame, abuse, self pity and isolation. Just a few of the words, some of the sentiments but they too are imperfect. They hint at the problem, provide an insight but the real words are elusive. They swirl around in some mysterious cloud just out of reach, taunting me to stretch for them, to define them.

If time in the diabetes wilderness has taught me one thing, it is that not much is normal and not a lot of things make sense. My body stands as a testimony to the fact. I share medical wards with people twice my age in better physical shape. They read eye charts I struggle to see. They do exercises I can no longer manage. I fail my own and others’ expectations with monotonous regularity..

These are some of my scars. I have mine and you may have yours. They need not become objects of shame and isolation. They need not be swept under carpets or whispered about in poorly lit rooms. They are part of what makes me me and you, you. When all is going wrong and diabetes makes no sense sometimes all that remains are scars They are the scars of life with a chronic illness and emotional rollercoaster rides but in community they are the scars that bind.

In spite of diabetes

Contemplating the greatest thing I have done in spite of diabetes is something I am battling with. I consider the many great things achieved by the many great people in the DOC and I am quite frankly amazed and left in awe. So many amazing people, so many accomplishments... and personalities that seem to leap off my computer screen.

I have come to diabetes via a slightly different road. Initially misdiagnosed as a T2 and having spent a good while avoiding the issue by the time my diagnosis was corrected I was lying almost unconscious in ER with severe DKA and a raft of complications. In my twenties I was nearly blind in both eyes, with severe neuropathy and a range of other issues.

Survival….I admit it is not much of an achievement but my story has not yet ended….I write a new chapter each and every day. I wake with a spring in my step I never had. I open my once near blind eyes and take in the daylight. I hop in my car and go for a drive, I take a walk along the beach at sunset, I let the cold rain wash over me on a humid and sticky day. These are not achievements to hang my hat on. They are not things I plan on sharing with my kids should the time come but I look towards a better day.

For now the story goes on. I have found in the DOC a community of people I love and cherish. I am motivated like never before to preserve what is left in my failing body. Each and every day I “meet” and converse with amazing people doing great things. I drink in their wit on Twitter. I read their blog posts, I hear their voices and I grin, no...I laugh. I look at the person I was and who I now feel I am and can’t help but celebrate.

In all honesty I don’t know if my body will ever be close to what it should be but that is no longer an issue. I am not laying down, I am not surrendering and I am not giving in. I am standing my ground and I am going to move forward. Surrounded and supported by an amazing community the only way is up.

Mine is no fairytale story, you will not find it recorded in any leaflet lying around at your endocrinologists office but it goes on, one day at a time. The introduction and the early chapters have passed and the greatest thing I have done in spite of diabetes I do each and every day….I wake up and when the stresses and strains of daily life begin to flood my mind I look back. I look at the carnage, I look at the confusion, I look at the defeat and I see a new day dawning in all of its brilliance. I see the sunshine, I see the rain and I interact with the most incredible network of friends and support I could ever have dreamed for.

If your life were a movie

If your life were a movie the main character would be inspirational. Yours would be no ordinary tale. It would be rich and complex. A story of heartache, of success and of struggle. It would be the story of all men with a unique twist. It would be intensely personal and yet easily related to. There would be wheels within wheels, moments of suspense, moments of intrigue and moments of mundane boredom.

If your life were a movie it would be a classic. Critics would herald the storyline as timeless. There would be episodes of failure and moments where all seemed lost. Broken relationships and dreams would be scattered amongst life long friendships and fulfilled ambitions. To you the failures would seem monumental but they would teach valuable lessons, they would inspire and they would bring many to tears.

If your life were a movie it would be billed as a blockbuster. It would screen to full houses with advanced bookings required. It would be both an art-house and main stream success. Audiences would leave with different impressions. To some it would speak of overcoming against the odds, to others, the inconvenience of battling a chronic illness and others still would find strength in identifying with the story….all would be right.
If your life were a movie, diabetes would be presented as it really is, sometimes invisible yet always present. At times it would take centre stage, at others it would not even be noticed. There would be high times and low times, success and failure, moments of confusion and moments of lucidity. Within the same story would lie unexplained contradictions and a multitude of loose ends.

In the process of making any movie there are mistakes. Scripts are written and re-written, scenes are shot and re-shot and sometimes in the process, people are hurt. Insults shouted in anger, linger and off handed remarks are taken with more meaning than intended. These are all hidden parts of a long production process. It is a process of refinement, of editing and of fine tuning.

The fullness of your story will never show in the mirror. It is not reflected in any A1C or reading on a glucometer. It is a tale forged from living with a chronic illness. It is learned from bitter experience and harsh realities, in the school of hard knocks. Swinging blood glucose, mixed emotions, guilt and loss are all key ingredients. Those things that we shy away from are what draw others to us. In our battles they find themselves, in our failures they find strength and from our success they draw inspiration.

Diabetes is an unpredictable part of life which requires constant vigilance and monitoring. These are simple truths but they are not the whole picture. The whole picture is contained in the blogs and journals of countless individuals. They are retold in vivid detail and with heartfelt honesty. They are your stories and they are mine. Some are written and many are yet to be.

No... your life may never be a movie. The stories played out in your everyday life no writer would dare pen and no director, dream of casting!

Sometimes you can't make it on your own. The things nobody told me

Fresh back from a fantastic walk I still have the words from the U2 hit "Sometimes you can't make it on your own" ringing in my head...

"Listen to me now

I need to let you know
You don't have to go it alone...
Sometimes you can't make it on your own"

Diabetes can be a very lonely illness. It can remain hidden from outside view yet must remain in the forefront of sufferers minds 24/7. Most of us enjoy the occassional day off of work, a public holiday, a vacation...a day at the game where we can leave behind the cares of life. Unfortunately we carry our diabetes with us everywhere. For me my meter, test strips, jelly beans and insulin are never far behind. Wherever I go, they will follow. It's not a choice, not really even an afterthought but a necessity.

Never was the proverb "A problem shared is a proble halved" more appropriate than in coping with Diabetes...never was it truer that with Diabetes, "Sometimes you can'tmake it on your own".

Admitting to a shortcoming is never easy to do. Putting your hand up and saying that something is just too hard can be a humiliating experience at times. I admire people who seem to be able to address all of their issues head on without flinching but I am not one of those people. I have learned to admit it and I am proud to say that opening up to my need is helping to lessen it.

It is OK to admit to struggling with Diabetes. It is OK to struggle with motivation. It is OK to throw your hands up in frustration when it doesn't make sense...sometimes it just doesn't. Sometimes you put your best foot forward, do everything you possibly can and still shoot a 200+. That does not make you a diabetic failure, that makes you normal, yes that's right normal.

If like me at times, you are finding things hard that need not be the endgame. Reach out your hands and ask for help. There are many people going through the same struggles at various points in the journey. There are people out there who understand, there are people out there who care and yes there are people out there to take you by the hand and walk you through what may seem a dense forest.

With so many complications hitting me at a young age I got so down on myself so quickly. I lost nearly all sense of hope and purpose.....then I found others just like me, the same age going through the same complications; some struggling, some triumphing and some just asking questions like "why". Being part of a larger group doesn't take away the day to day physical struggle BUT it does motivate me.

Admitting to a need is not failure, it opens the door to real freedom. There is strength in numbers to overcome, there is strength to help you along today no matter where you are in the journey.

Single Unattatched male. With baggage

Well, there it is...I've said it out loud..

I carry with me a lot of baggage.

I'm not proud of it, I don't really want to advertise it but it's there. Wherever I go, every conversation I enter into, every blog I read, every song I listen to, my perspective is twisted by unprocessed baggage. From off handed remarks made to me from friends, to insults hurled at me from enemies, I am a slow healer and thus a baggage "accumulator".

For me the scars of living with Diabetes run deep and wide. Like the disease though, the emotional scars are well hidden. I do my best to camoflauge them. I celebrate a good run of blood sugars, I rejoice in a healthy A1C, I even enjoy choosing healthy food once in a while BUT beneath that there are dark shadows. There is the little addressed fact that diabetes is an "emotional" more than physical disease.

Diabetes "messes" with my mind as much as with my body. I am sick of all of the science talk. Carb counting can take a hike. My cholesterol levels can leap from a plane for all I care, I just want it known, addressed by a HP even, that there is an emotional toll being paid by me and I'm sure some of you.

My inner voice cries out "suck it a man" but still the toll remains.

To be honest I don't really know what I want. I don't want hugs and kisses of sympathy from every person I meet. There are millions of others suffereing serious debillitating illnesses who go about their days with cheer and a smile. I don't want an excuse to justify my shortcomings and failings (which are many), I just want to let my guard down once in a while and cry like a baby....cry me a river..cry, cry and when I am done being miserable be miserable some more.

I want to find voice for the hidden pain. I want to let it out.

You carry me and I will carry you

Perhaps never more so than today, have I felt connected.

The DOC is a very strange place and I must admit to approaching all "social media" with a degree of scepticism. I have only recently begun to enter the 21st centuy technologically. Whilst I have had a computer for some time, I have remained proud of being a kind of "Luddite"...old school..brought up at a time when kids were kids, playing meant sliding in the dirt and a social gathering was a picnic with family and friends at the park.

I loved that time of my life. It was a combination of both the innocence and freedom of a sheltered childhood (which I might add was Diabetes free) and the fun of playing with friends. I guess to some extent everyone lucky enough to grow up in a good home remembers their younger days fondly but I do particularly so.

At the risk of sounding like an old grandparent (in my mid 30s) I love handwritten letters, I love meeting one on one and I love conversations where everything is laid on the table. That time where close friends share their innermost thoughts and fears looking to help each other out. That process I have always thought was organic. You can't plan to sit down with someone and have D&M (Deep and Meaningful), it just happens. Those times I have shared with friends remain and always will, some of my lifes most treasured memories. I both loved them in the past tense and LONG for them in the future. I am not ashamed to admit that I hate playing "nicities". I hate superficial relationships. I understand that everybody has acquaintances, work colleagues and then their friends I just seem to long for more friends and less acquaintances.

With that said I am still very weary of online "lives". I am not a part of Facebook and have only recently began to dip my toes in the world of Twitter. I long for face to face contact and I will always hold that view. Herein lies the contradiction.... I am posting an online blog.

Never before have I felt so supported by complete strangers as I do in the Diabetes Online Community. I am only very new to it and I know so very few of you but I love the transparency of its members...their "nakedness" as it were. Whether it be the vail of anonymity that writing online brings or just the people involved, I have found something in others blogs and forum posts that inspire me. Here everyone is united in a common struggle. We all share each others pain. We all endure roller-coaster BGLs at times and we all live with some kind of sword (named complications) hanging over our heads. You know how I feel and I know how you feel. Even in uspoken words we are together....Regardless of whether we never meet just reading your struggles can be inspiring. Connecting. Refreshing. Regenerating. I will always long for more moments of personal contact but in the mean time...

You carry me and I WILL carry you.

In celebration of the DOC

I don’t know if it’s the blind optimism that comes with New Year but something within me is looking to shout out in celebration

This post has really been six months in the making. In many ways it is just like diabetes management, full of inexplicable contradictions. It is both extremely easy and very difficult to write at the same time. The words flow from my mind in a jumbled mess as I try (probably unsuccessfully) to put them into some kind of coherent prose.

It all began with reading a simple online blog. After a long time in the diabetes “wilderness” post diagnosis I found myself swamped with feelings of guilt and isolation. Not only did I find diabetes almost impossible to talk to my friends about...things just did not always work the way they were meant to. It seemed that I was destined to be a “diabetic failure” always getting things wrong.

My exposure to the DOC showed me for the first time that the feelings of “inadequacy” and “guilt” were perfectly normal in diabetes. From one blog I came across another, then another, until finally I came to the “showcase” the real jewel in the DOC crown...The (US Eastern time) Wednesday evening DSMA Twitter chat with a huge shout out to its fearless moderator Cherise. Here was a place where I immediately felt at home. Here I found tens, even hundreds of people, all feeling exactly the same way as I did, battling with the same emotions, suffering similar defeats and winning similar victories. Here diabetes was talked about candidly and approached with a sense of humor that came from so many great and colorful personalities all interacting in real time.

This encounter however has led me to an unexpected problem in my personal surroundings. Amongst my circle of acquaintances chronic illness is a thing of great shame, a shame that heaped “guilt” on top of the normal problems of my diabetes management. Meeting so many great people online has taught me that there is indeed no shame in diabetes. Whilst it is certainly no cause for celebration, it is nothing to feel “guilty” about. This has left me in a kind of awkward position. I am no longer content to hide my diabetes from those around me. I want the feeling of glorious normality” I get from the DSMA chat to extend to my everyday life...

In many ways my blog has been the first point of connection between me “the diabetic” and the me amongst my acquaintances. Here, alone in my room, I feel I can freely address the good and bad side of living with diabetes on a daily basis. I don’t really know if anyone actually reads what I write but the release is tangible. Writing helps me to feel connected to so many others I have met in the DOC, for I find my words echoed in their blogs and vice versa. Diabetes is truly an illness best treated in “community”.

Insulin and fingersticks may well be essential accessories to healthy living (survival even) but there is no feeling like that of connection. The knowledge that I am not some kind of “freak” or “failure” is one that no medical text book or endocrinologist could (or will) ever impart. The more blogs I read and the more twitter chats I take part in, the more I feel the chains breaking. I am no world beater, (in fact I have faced several diabetic complications) but in “community I am one of many. I am strengthened by the struggles of others, I am renewed by your victories, I am brought to tears with your loss and I am led to uncontrollable laughter by your irony and sense of humor.

The DOC is a place of reality and humanity. As another year begins I am honoured to start it with those of you I have met online. Thank you for accepting me as I am and for the first time since diagnosis in a hospital A&E making me feel “normal”

Writing the next chapter

His day began as normal, just another day with diabetes. Another fingerstick, another injection, breakfast and then in the car and off to work. There was an eerie sense of déjà-vu he hadn’t been able to shake ever since his diagnosis. It was the same routine just a different day.

She had commenced her afternoon in the usual fashion. It was an unremarkable subway ride home in The Big City. She had food on her mind, an unflinching high blood glucose, some bills to pay and hopefully at the end of the chaos, some time to post on her blog.

His lunch break came around all too slowly. Diabetes hadn’t really changed his eating habits but it was taking its toll in other ways. With every meal he faced the usual dilemma over how much to bolus and how to go on fighting “his war”- for that is what it had become to him, a private war...a lonely war, just him, his insulin and a three monthly endo. visit..

She arrived home to a quiet house. Her husband was away on business, so she had some time to herself. Almost unconsciously she turned on her computer and headed to the kitchen to open the fridge. Despite many years of experience she never considered herself a master at selecting insulin doses. She was still shaken from last nights low so she decided to proceed cautiously with dinner

His work day ended much as it had every day for the past five years. He locked up the shop and headed home. He had never thought he needed people but something about diabetes, found him withdrawing from his usual circle of friends. He felt misunderstood. He was alone. He wanted sympathy but most of all he just wanted someone to understand the war, to speak his unspoken words and validate his feelings of confusion and loss.

By the time she sat down at her computer it was nearly midnight. Her blog was essentially a journal of her life. She talked about her day at work and the inconvenience of living with diabetes. It was a part of her routine but it had never ceased to be tiresome. She chronicled her anger at yesterdays misjudged bolus, her
fears of an upcoming endo visit and plans for the week ahead. It had seemed a fairly unremarkable entry to her but she posted it and headed off to bed. It had been a long night and she had another hectic day ahead.

As a last resort and in desperation he headed on-line in an attempt to make sense of things. His family hadn’t been interested, his local doctor knew only A1Cs, lipids and insulin but he knew the mental toll diabetes was taking. He was skeptical to begin with. He browsed through so many listings about wonder cures, healthy living with diabetes, diabetes this and diabetes that, until he stumbled upon her blog As he read he felt the tears running down his face. Page after page he read, seconds turned into minutes and minutes into hours as he found his experiences retold in her words.

They lived on opposite sides of the planet yet somehow he had felt an overwhelming connection. It was well after midnight when he went to bed but that night he had a spring in his step. That night he was understood. That night someone had put words to his thoughts, had described his low blood sugar, his confusion and his anger. The next day the routine would be no different but he had found himself understood and with that, in a strange way renewed.

This is my personal account. My version of how I came to find a home in the DOC. Your stories are writing the next chapter. Somewhere out there, the next me is looking for you. The irreplaceable “diabetic” you. They want to hear your story as only you can tell it. You might hear their muted cries in the form of a blog response or tweet. You may unknowingly pass them by in cyberspace as you read the same stories but they are there…. and they are looking.

The battle to find a cure goes on in laboratories around the world but the real life stories of people affected by diabetes are yours and they are mine. Within and without the DOC are people longing for connection and understanding. You may not have the power to find a cure but you have your story. It is a story of heartache, of defeat and of triumph at the same time. It is played out in the events of everyday life and it, like you, is so valuable.

You may well be writing the next chapter in someone elses life.

Right at this moment

Right at this moment a mothers heart is broken. She has just received the news that her beloved child has diabetes. She is cut to the quick...scared, confused, apprehensive and terrified all at the same time. Questions flood her mind, unanswered questions and unspoken fears.

Right at this moment a young woman’s confidence has been shattered. Looking down at her glucometer she is shocked by the number staring back at her.. She is confused, a little shaken and on the verge of burn-out. Questions flood her mind, unanswered questions and unspoken fears.

Right at this moment a business man has come to a stop in the middle of his working day. The symptoms of low blood sugars have hit hard. He has a big presentation to make. He has clients to see and his boss is on his tail about performance issues. Questions flood his mind, unanswered questions and unspoken fears.

Right at this moment a child is in pain. His fingers have been battered and bruised from endless fingersticks. He is sick of enduring the endless requirement of needle after needle. He is sick of being different from all of his classmates. He longs to fit in, to be accepted. Questions flood his mind, unanswered questions and unspoken fears.

Right at this moment a café worker is struggling with diabetes “burn-out”. She can’t bear another day of routine, she can’t be bothered thinking about the illness that will kill her if left untreated. She reaches for her insulin but in a moment of rage throws it away. She is at a crossroad. Questions flood her mind, unanswered questions and unspoken fears.

Right at this moment a young man has received his best A1C since diagnosis. Months of hard work, discipline and attention to detail have brought him to this point. He wants to shout out in excitement. He wants nothing more than someone who can understand the joy he feels. He looks to his non-diabetic friends and they are not interested. Questions flood his mind, unanswered questions and unspoken fears.

Right at this moment a young lady has received the news that she has developed severe retinopathy. The diabetic complications that she had heard so much about have arrived at her door. She feels that her future is gone, that life will no longer be worth living. Questions flood her mind, unanswered questions and unspoken fears..

At some point in our lives each of us have been that person. Some days we are winners, some days we are losers. Some days we fight with all that is in us, others we raise the white flag at the first hint of trouble. These are just moments in time, snapshots of our lives with diabetes.

From that low point we have rebuilt and made tomorrow a better day. From that bad news at the eye clinic we have found a fresh hope for the future. Conversely we have each thrown our hands up confused and bewildered by a blood sugar reading. We have given up the fight and prepared to just lie down in defeat.

In all of these moments we are just ordinary people, people living with diabetes. It is from these moments that we can be of greatest help. Somewhere in the DOC or in your community, someone is looking for you. They need to hear your experience, they need to know of your pain. They are not looking for long complex medical discourse, they are not even necessarily looking for the answers they are just looking for validation, the knowledge that at that moment in time someone is living their pain, riding the crest of the same wave or trapsing along the valley floor, defeated and broken.

You may think that you have nothing to offer. That you are just plain old ordinary you, but you are so much more. You are the person in whom I identified and found the strength to fight on. Your comment on my post made me feel a part of something bigger, connected, even worthwhile. Your tweet so brief touched base with me so deeply and brought a smile to my face.

Right at this moment you can be the greatest diabetes advocate by just being you.