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No Longer Freakishly Invisible

02/06/2014 12:38

Have you ever had something stolen from you?  Or perhaps it was more a case of something being borrowed permanently from you. 

Health can be a little like that at times don’t you think?  If we live with either type 1 diabetes or another “365” challenge then we may share the feeling that part of our health was stolen from us.  Out of nowhere our lives change because of this diagnosis in at least physical ways.  The demanding job of becoming our own process engineers is our 24 hour, 7 day a week job.  What if you have more than one chronic illness?  There is still only 24 hours in a day so the job of managing our health becomes even more grueling at times.  Type 1 is a thief in my experience.  It steals time…so much time.  It demands that we take care of it every minute…not just every waking minute but rather every single minute of every single day & night until there is a cure.  Type 1 steals happiness some days & leaves us with feelings of exasperation, sadness, and profound anger at times.  It also magnifies the joy & the really right on days.  I don’t have “good days.”  I have great days when I feel well & I live every single minute as if it were a year.  The gratitude felt for those days is indescribable.  The great days are presents that have infinite value.  The really brutal days I find are sustained with either the memory of a great day or the anticipation of one and always with faith & hope. 

If we let it to a certain degree type 1 can borrow some of our identity.  There may be circumstances where either a well meaning or robotic acquaintance refers to us as “the diabetic.”  Diabetes is neither a noun nor a verb & I get pretty feisty if someone who does not have diabetes refers to me as a diabetic.  Diabetes does not define us nor become our identity.  A phrase that serves me well in life in more ways than just pertaining to diabetes is, “that is not okay.”  I am not going to choose to die on every hill so to speak that I come upon yet the important ones I will big time. 

Type 1 at times steals spontaneity.  If you are a gal with type 1, how large is your purse for instance?  Let’s face it, we have to carry a number of type 1 “pieces of equipment.”  The idea of merely pulling our shoes on & off to go with a friend who drops by & asks us to join them in any given activity is nonexistent to us.  We have to figure out what our blood sugar is right now & how much acting insulin we still have in our system.  Are we going to be exercising?  Do we need to figure out any stress basal for either good or negative stress situations?  Do we have our meter with us?  How many strips are in it?  Do we have a fast acting & slow acting sugar source in case of a low?  How much insulin is left in our pump cartridges?  That is the beginning of the list of questions that automatically tend to go through our minds every single time we leave our homes for any duration of time.  Type 1 steals enjoyment.  There are consequences to eating certain things at certain times.  As an aside I am really super relieved that our sons are finally through the stage in life where they like to go on occasion to Mcdonald’s.  I have never eaten there & not had a huge high blood sugar problem to deal with for 5-8 hours afterwards.  I bolus the proper amount but it does not seem to matter since the outcome is always the same-- profoundly high blood sugars.  That’s okay though because it was never my place of food bliss anyhow personally.  We have to think about what we are eating & literally be doing math to figure out how many carbs are in every morsel & how much fat content to figure out how our insulin is going to behave for us.  It kind of sucks the fun out of eating out with others at times I find especially if I am at someone’s home & I have no idea what is in the dish prepared & the carb content so I have to take my best approximation of what my insulin needs will be. 

At times type 1 has borrowed my reputation for being a go to person that can be always counted on to follow through on everything that I give my word to & replaced that with a feeling of me feeling like a flake for having to take a rain check on certain activities already planned.  Giving my word is a huge deal to me so this bugs me big time when I become either in such low blood sugar that immediate plans have to be put on hold or high blood sugar that makes me extremely sick for hours & hours.  If you have type 1, you will know exactly what that feeling is like.  The thing is that type 1 is an invisible chronic illness for the most part in my mind.  Most people cannot look at someone else & figure out that we have diabetes.  I am glad about that because I would personally hate that.  I choose to wear my insulin pump in full view so that I can easily access it.  The great thing though is that I can count on one hand the number of times that people have said a word to me about my pump.  Most people figure that it is a cell phone or something like that.  When we have awfully low or high blood sugars there still is no neon sign that says that we have diabetes.  We feel horrible but the rest of the world tends to not take much notice to the fluctuating blood sugars.  It is an invisible roller coaster living on our insides.

How many times have you been told that you don’t look like you have diabetes?  I have personally lost count.  “Oh but you look so healthy” is a response that I get often when people know that I live with type 1.  Other times, people will say that I must be getting better because I look so well.  That’s a pretty strange thing to say to someone with a chronic illnesses I believe.  People’s hearts tend to be in the right place though so I just say “thank-you.”  Let’s face it, unless you or someone close to you has diabetes, you have no real clue about what this disease is all about.  I remind myself on the days when I feel exasperated by someone’s ignorance of diabetes that prior to 7 years ago diabetes was not on my radar screen either.  Why would it be?  Unless we or someone we love is living with diabetes, why would we know or think much about it?  We could fill in the “diabetes” with any chronic disease. 

What I don’t want diabetes to steal or even borrow from me is my sense of humour, my dignity, enthusiasm, love for others, and hope.  Diabetes must not be allowed to take us away from ourselves & our loved ones.  By this I mean, if we had a passion for life & adventure before our diagnosis then diabetes should not take this from us.  Instead, it can if we choose, be a reason to pursue our passions with greater “big timeness!”  For me that means that diabetes is a launching pad for greater big time humour, enthusiasm, love for others, faith, hope and feistiness.  Type 1 does not get to rob us of all that truly matters to us.  We may find that we have to have many offensive & defensive moves ready daily for diabetes.  For instance if we left our front doors to our homes open every day, sooner or later a robber may enter our home & steal our possessions.  That is similar to type 1 diabetes.  Physically & emotionally without offensive & defensive strategies, a robber can enter our lives & steal our joy, hope & the essence of what makes us beautiful originals.  The great news is that we have the ability to choose to put these strategies in place so that we have mini Fort Knox’s in place when the robber of diabetes appears.

Here is an example of what I mean.  While diabetes tends to be invisible, I have found myself with an illness that is far from invisible.  It is freakishly visible I have found.  Since the end of March of this year, I have had large red welt like spots on 90% of my body.  To say that there is discomfort would be an understatement.  I got these spots after I came down with a very severe case of strep throat.  There was an extremely bad strain of strep throat that went around our region last winter.  A young lady in our area in fact even died due to this strain.  She was only 30 years old, athletic & in incredible physical shape.  It is profoundly sad that this happened to her family & my heart goes out to them. 

Over the past few months as well, I have been going for many medical tests.  Prior to the spots, I could sit in the waiting room with my invisible type 1 & wait my turn.  Now as I wait in my stripped hospital gown over & over again, I am getting these stares of “yikes, is that contagious!” Ironically, I have been going for testing about a 3 year abdominal pain that is getting worse.  The spots are freakishly visible & it sure leaves type 1 in the shadows as far as other people are concerned.  Over & over again I have been reassuring anyone around me that they are not going to catch what I have from me.  My attitude was that soon these spots would disappear & I would laugh about it all.  I find myself not in the laughing mood about it today though.  Yesterday I went for a follow-up visit with my doctor & he told me that I appear to be the 1 in 3 people that get stuck with this guttate psoriasis permanently.  I was not prepared for that news.  This morning I had a big time cry because it is truthfully getting to me.  The abdominal thing seems to affect my blood sugar control & the psoriasis does too & just having type 1 on its own frankly is exhausting enough.  It never dawned on me that I would be stuck with this.  My hope almost got stolen as far as this newest diagnosis is concerned.  Then I realized that it is only being borrowed because there is no way that I am going to accept that I am stuck with this for the rest of my life without first exhausting all levels of help.  There is a clinic that specializes in this type of thing in Toronto & I will go there & find out more about this & find a way to either get rid of it or improve it.  I will get another offensive & defensive team in place for this too.  Hope restored.  It was always my position that diabetes cannot be allowed to steal my hope, joy or my life & guttate psoriasis & this abdominal thing are no exceptions to this rule either.

One of my friends once made a joke about me having the enthusiasm of an Amish person waking up in Vegas.  At the risk of proving this to be true, I have never been to the Distillery district of Toronto.  I mostly “goat path it” wherever I go.  I don’t like super busy highways as they send my blood sugars soaring.  You can bet that driving to Toronto is never on my list of blissful activities.  The GO Train is awesome in my mind but driving there is a pain in the blood sugars.  Due to the location of the clinic in this case I will have to drive…”oh bother.”  The up side though of going to this area is that it is described in a way that it sounds like my cup of tea cerebrally.  The area is apparently quite lovely & I will look forward to describing the area after I have visited it. 

Don’t you find that there are times that you feel that you are going to scream if you don’t find some semblance of a blessing in amongst the unexpected news received?  I made a decision in advance to appreciate the district & to treat the day as an adventure.  The bonus will be if someone is actually able to help with bidding these spots adieu.  The thing that I remind myself constantly though big time is that I will never allow my hope to be stolen permanently.  I feel a little knocked down right now but not beaten.  I am getting back up. 

My heart’s hope for you is that whether you have a visible or invisible illness that you never let anyone or anything ever steal your hope.  You are a beautiful original after all.

Smiles, Saundie :D

May you find yourself beautifully visible & appreciated by others for the person that you are whether you live with spots, diabetes or anything at all throughout life.  Next Monday's sharing is "News Feast."    :)