Pssp.

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t1dactiveliving.

Creating this was only a few years ago, but it feels like a lifetime.

Writing hasn’t been easy.

Being vulnerable with your most intimate thoughts and feelings is hard. Incredibly hard at times.

I’ve been enjoying the “break” but I’m by no means leaving as a source of support.

 

The past while I’ve really been reflecting on what t1dactiveliving means. And what I want at the end of the day, is to help people, even if it’s just one person. So I’m planning something new, a different medium of connecting, in the hopes that others won’t feel as alone, confused and scared as I was.

That’s it for now. I hope you are all doing well.

 

 

The Body Shutdown: Feeling Like Your Body is Telling You to Die

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Last night, I think I consumed an all-time high of carbs. I was slurping in Coke with a straw, my lips barely able to grasp the stupid thing. Candy, chocolate, you name it, I ate it.

My stomach was churning and I just laid on my couch, feeling the energy being sucked right out of me.

That’s when things got weird. I’m not sure if I ever felt this way before (maybe I blocked it out of my mind), but last night, I felt my body shutting down slowly.

Breathing became eerily calm and slow. My body felt light and airy. My physical body felt defeated.

It was over an hour before I felt like something inside me sparked and back I came. This was one of the most frightening experiences. And yet today, if you saw me, it was like nothing ever happened.

This. is. invisible. illness.

Drawing it All Out: Body Mapping for Diabetes

 

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I’m lying down on a life-size piece of brown paper, having my body be outlined like I’m in kindergarten. At 33-years-old, I’m surrounded by paint, Mr. Sketch scented markers, and even crayons. Do I feel foolish or childish? Yeah.

This is what every Thursday looked like for me as I took my first ever Body Mapping For Diabetes workshop. It was a 6-week commitment that took me on a wild ride through my life…back before my diagnosis and into the depths of my belief systems about what it meant to live with a chronic illness.

“Participants will be using a life-sized sketch of themselves to map out their own narrative of diabetes. These stories will provide the basis for conversations around some of the challenges of living with diabetes. No background in drawing or art is required.

The body mapping technique was first developed by artist Jane Solomon, in her work with women living with HIV/AIDS in South Africa.”

-DiabetesTalk.ca

Don’t get it twisted: the inner work was hard. It wasn’t as if I drew myself on a large paper and finally had some type of cookie-cutter Hollywood ending (me and diabetes holding hands into the sunset).

There were days that what I discovered was painful. And confusing.

When you take action to deal with your relationship with any illness, it’s important to realize that you will be opening yourself up to vulnerability and for me, it included a lot of shame. I still struggle today with telling people I have diabetes. Deep deep down, I feel that I am flawed, that I’m “damaged goods”, and that their rejection of me means I’m just not worthy to be here.

What this program reaffirmed and brought to light was that I am much more than someone who lives with diabetes. It is so easy to create a single-story narrative of your life, when in fact, there are so many facets that make you, you. And knowing that is essential to healing.

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Getting back to basics is an incredibly powerful tool. During this art therapy, I drew out circles of my support system, illustrated major life events since birth and symbolized the effects of diabetes both mentally and physically. What I just described is only the tip of the iceberg.

I wish this was available sooner. I’m eternally grateful that I got the chance to see this program from start to end, and now, like always, I move forward armed with more knowledge, another form of support and most of all, hope for a brighter future.

To learn more about Body Mapping for Diabetes, click here.

J

Confessions on World Diabetes Day #WDD

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I’m not going to search “cure for diabetes”, because in all likelihood, I’m going to get results such as tea from Asia, a pill from a company with no address or some type of scary diet that involves me only eating with my left hand and on Tuesdays.

I don’t live day by day hoping for a cure. A cure doesn’t even cross my mind as something feasible. Maybe that’s the pessimist in me but I really live like there will never be a cure.

Maybe that’s a blessing and a curse all rolled into one.

Now, four years later since my diagnosis, I am sure of a few things that I never thought I would be.

  1. Whatever you think is bad, could be much worse.

Diabetes puts things into perspective. Fast. To say that I hit my anxiety and depression bottom at the time of my diagnosis would be a huge understatement. Although it was a burning, incredibly painful, dark time, I have come to realize that things could have been much, much worse.

I am alive. I have access to insulin. I am not in danger of being killed for having a disease. I try to think of this as much as I can. Things can always be worse.

2. It is up to us to help break the barrier when it comes to talking about mental health.

I’m surprised at how little support there is when it comes to mental health and diabetes. It’s certainly something I had to fight for in my own health journey. We have to raise our voices and create, demand and advocate for more resources. So many suffer in silence, and we are at a pivotal time where we can help bring this issue to light.

3. We all want self-acceptance. We all want to feel unconditional love. Diabetes and any other autoimmune disease can make this process 100 x more difficult. For me, it’s been such a treacherous road. And I’m not sure what lies ahead. All I know is, I am so incredibly thankful for the people I’ve met through my diabetes journey. I couldn’t imagine life without them. So to you, you know who you are…thank you. You guys have pulled me out of storms and I hope to spend my life providing you the same type of love and encouragement that you’ve shown me.

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Happy World Diabetes Day,

Jess

 

 

 

Late night #t1d confession

I am so tired. I’m drained and frustrated and just feel like lying in bed (with a big box of tissues in hand).

Today was a particularly awful day. My anxiety was sky high and throughout the day, I just ended up sobbing and burying my head.

This is when my type 1 diabetes can come and just wreak havoc on me. Last night I was sky high and I felt it in the morning. Throughout the day I was just shot.

This disease never gives you a break. And sometimes when you’re down, it feels like it’s just kicking you. Spitting at you. And taking an unflattering photo and posting it online.

I know people have it a lot worse. But today I just had to let everything sink in and just be.

Tomorrow is a new day.

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I discovered online last week these amazing cards made specifically for people with type 1! When I checked out their site again today, it lifted my spirits a bit. I love the message, I love the questions and it opens a dialogue that needs to happen. Check out Walk A Mile cards here.

 

I am not a diabetic.

When I first watched this amazing piece by Prince EA, I thought to myself- I haven’t really admitted to all the nasty things I believe when I label myself. Trust that I can be extremely harsh and abusive.

Sometimes it’s this:

It’s about that label of being a diabetic. Living with diabetes. However you call it.

What have I started and continue to believe about myself with a type 1 diabetes diagnosis, a neurological disorder, hearing impairment?

How do I break this down, shatter these assumptions holding me back? I think it’s first by getting over the fear and starting to share my thoughts.

Here I go.

XO,

J

 

Letting go of friendships after diabetes diagnosis. Q&A with Psychological Associate Michelle Sorensen

Q&A Michelle Sorensen

How do I mentally let go of some of the friendships that did not survive my diagnoses?  Still mourning, nothing left to say or do….

First of all, when someone is grieving they always have the right to distance themselves from those who cannot support them in the way they need to be supported. 

Sometimes it is not MORE support that is needed, but a DIFFERENT kind of support.  You can be surrounded by people but feel totally unsupported.

If being around someone who cannot support you in the way you need to be supported (with empathy and compassion) is upsetting, create distance when it is possible.  If you feel a little guilty doing so, don’t worry.  It is far better for you and for others if you choose a little guilt over a pile of resentment.

When angry, we do not want to turn against others (aggression) or turn inwards (bottling it all up). Asserting yourself may mean disclosing that you are hurt, disappointed or confused about their reaction. However, do not create expectations that this will change their behaviour. If you assert yourself, do it for you.  Even if the friend cannot respond with anything positive, feel proud of yourself that you were brave enough to be vulnerable and open up.  And then move forward and focus on building other relationships.

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As someone who is a long ways out of young adulthood and firmly entering middle age (!) I would advise to be careful about writing anyone important off completely.  The twenties and even thirties are full of major life changes and growth.  People are not the same (hopefully) at 40 as they are at 20.  I have friends who were amazing when I was diagnosed.  I still remember my friend Deb coming to get me from the hospital and to pick up my mom from the airport.  I remember my friends Diana and Jenn telling me that when they heard I was admitted to hospital and diagnosed, they cried on the phone together. 

I still tear up when I remember the relief of knowing some of my friends understood the severity of my situation.  However, I had friends caught up in their own lives who made insensitive comments, minimized diabetes, or hurt me in some way.  Some of them have had tough life experiences of their own since then or simply matured and now are so supportive.  I am really glad I kept them in my life, but just adjusted expectations or took breaks as needed.

I also know looking back, that being in my twenties made it hard to incorporate chronic disease into my identity because I was still figuring myself out!  When my husband came into my life, he challenged me to be less of a people pleaser and to look out for myself more.  His support and insight really helped me to realize that my expectations of others were largely a reflection of how much I expected out of myself.  Now that I am more compassionate towards myself, the behaviour of others impacts me less.  I always encourage my type 1 patients to “create more space in their lives for diabetes”…. being less stressed and less rushed, juggling fewer balls…  this all helps us to have more patience for diabetes and for other people.  It may be extra important for people with diabetes, but it is actually true for everyone.

Diabetes has given me so many life lessons.  I sometimes joke that I would be quite happy if I was cured now and could hang on to the life lessons and give the diabetes back!  As much as trying to manage the diabetes drives me crazy at times, I seriously doubt I would be a happier person if I had never been diagnosed.  Having a perfect HgA1C does not make people happy if they never worried about it in the first place!  So I will take my imperfect pancreas and make the best of it.

Thank You Michelle Sorensen

This is the third and final installment of my Q&A series with Michelle. Thank you for all of your time Michelle. You have taught me so much and hopefully others reading.

If you missed the first two, here they are!

Mentally overcoming the diabetes stigma. Q&A with Psychological associate Michelle Sorensen

What are the challenges specific to adults diagnoses? Psychological associate Michelle Sorensen answers.

XO,

J

What are the challenges specific to adults diagnoses? Psychological associate Michelle Sorensen answers.

Photo provided by Michelle Sorensen

Photo provided by Michelle Sorensen

After I saw Michelle speak at the Animas Type 1 Update this year, I knew I had to connect with her.

She was able to articulate so much of what I couldn’t say about my emotional journey with type 1 diabetes. One of the best takeaways I had from that event was this short video she shared. If you haven’t watched it yet, please do.

Michelle has been kind enough to answer some of my most burning questions. Here is the first one!

What are the challenges specific to adults diagnosed with T1?

I think there are some very unique challenges.  It seems to me that with adult Type 1’s, there is an increased risk of misdiagnosis. That being said, there is no doubt that T1’s of all ages are at risk of a missed diagnosis.  I meet so many T1’s diagnosed as adults who were clearly more likely to have T1 than T2 based on age and risk factors, but are started on oral medications rather than insulin because they are labelled as T2.  The LADA (latent autoimmune diabetes in adults) cases are even more likely to receive this treatment and are often told their blood sugars are not high enough to be T1.  This is so frustrating because early intervention can really ease the physical and emotional suffering for people diagnosed with T1.

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I think for a few different reasons these traumatic and dangerous diagnosis stories occur more to adult Type 1’s.  For children diagnosed with diabetes, the alarms bells go off and they are usually treated with insulin right away once they are diagnosed.  For those fortunate enough to have a children’s hospital, treatment is especially prompt and appropriate.  Conversely, I have met young adults sent away from a physician with high blood sugars either on oral medication or simply given a referral to a diabetes clinic.  This lack of proper medical attention adds to the confusion, isolation, and psychological trauma.

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So many adult T1’s are starting their diabetes journey with a lot of grief and loss but without the right kind of support. They may be out of the family home but many have not yet established a family of their own. Young adults are trying to establish autonomy and independence and may see asking for family help as weak or childish.

They are expected from the beginning to manage their own diabetes but could often benefit from having supportive family or friends taught alongside them how to check their blood sugar or administer insulin.

Closing speaker Joe Solowiejczyk quoted this prayer during his talk.

Managing one’s diabetes is a huge burden to carry alone. When adults with T1 (who were diagnosed as children) describe their past experience in paediatric care, it is often with longing.  They remember the way staff knew them and their families, the encouragement and the smiles.  Adults could use all of this as well! We like smiles and bright colours and being seen as a whole person!

Look out for more Q&A with her in the future.

Thank you Michelle 🙂

Read more about her here.

Did you know I have anxiety? Anxiety and diabetes.

A recent Instagram post: It exists. You can live without hating your body, a disease you might have, or circumstances beyond your control.  There's so much happiness and life to live. Every moment is a gift. So stop and really take notice of your thoughts. Take stock of how much time you spend doing things that never help you achieve your goals.  Calculate all the time you spend worrying about nothing, reading about people you don't know and will never be part of your life and choose to focus on the better.  Health is not the absence of disease. Health means choosing a life worth living.

Beside the toilet. On the floor. In my bed. Under the dining room table. On the street. During a run. In the shower. At a casino.

I have lived with anxiety for the majority of my life and these are a few of the places where I have had debilitating anxiety attacks. In the midst of hyper-ventilating, crying and often shaking, I sometimes think, “What did I ever do to deserve this?”

Sometimes I wake up with a face so swollen from so many hours of crying, it looks like I had some type of severe allergic reaction.

Although I haven’t addressed this much before, I am going to now. This is prompted by fellow Canadian blogger and athlete Chris Scully Brown. She recently wrote this article for A Sweet Life.

It’s so honest. And vulnerable. And crazy empowering.

Scully, thank you for being so brave and giving your perspective on a topic we need to address more.

J

 

Grief-stricken, heartbroken and lifted. The Animas type 1 update event.

I am going to make a plea to you now.

If you are reading this: feeling alone, overwhelmed, depressed and often angry about living with diabetes, I beg of you…

Find help.

Please find help in creating that circle of positive support, those to stand beside you through this journey.

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Event: Type 1 Update, Mount Sinai Hospital, Toronto, Ontario. April 11, 2015

During Michelle Sorensen’s talk at the Type 1 Update, she shared a short video that verbalized exactly what I wanted from my own dream team. This video confirmed to me why I have chosen the people I have at this stage in my life, and why others are no longer here.

It was powerful and here it is.

What did you think of the video? Were you at the event?

For me, this video made me tear up. I saw clearly why some of the people that used to be in my life are now gone. They weren’t bad. They weren’t unaccepting. They just couldn’t provide for me what I needed and you know what? Maybe the people that are now out of my life are grieving the loss of the previous me, the person I was before diagnosis (of diabetes, my neuro disorder, the list goes on). And that’s okay.

There’s no blame to be had.

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Now as I sit here writing this, I am so incredibly grateful for being able to listen to Michelle speak at the podium and say so many things that I just needed to hear outside of my own head.

Over the next while I will be blogging more on the Type 1 Update event, focusing in on different topics each time.

If you would like more info now, here is a roundup of all the tweets that day.

Lots of love,

Jess

The Type 1 Update is an Animas event. Animas Canada has kindly chosen to support me with the Dexcom CGM as I continue to train for triathlons, cycling and running events. I believe in full transparency and appreciate that Animas Canada does not review or approve my blog posts. Please read the full disclosure here