Tag Archives: diabetes

Language and Diabetes #DblogWeek

Day 3 of #dblogweek2016 has a very important topic : The language we use when talking about diabetes and those who live with it:

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

I am very particular about the language I use when referring to diabetes or the people who have been diagnosed with it. Start with the word that will likely get the most attention today, to me diabetic is an adjective to describe a disease, not to describe a person (who is not, by definition, a disease). It is not a noun. I expect to see a scientific paper confirming that with better insulins and access to treatment, diabetic retinopathy is on the decline. I don’t expect to tick (or want to accept) a box on my insurance or driver’s licence form that categorises me as diabetic.

It is not that I’m offended when people use the term diabetic. And I certainly don’t judge others for preferring it or simply having no opinion on the matter. People are free use whatever words they want to describe themselves. However, for me, it’s about seeing people with diabetes as individuals not as a collective statistic. It’s about reducing stigma on a disease which already carries far too much of it.

I feel judged enough as it is without testing my blood sugar to find out it’s bad and that I can’t control my diabetes. I am never high or low.
But even when I manage my diabetes to the best of my ability, my blood glucose levels are sure to be outside of my target ranges at some point on most days.

I also don’t want to be told that I suffer from diabetes. Yes, diabetes makes me suffer at times, but certainly not all the time. Besides, how on earth can someone other than me decide if I am suffering or not?? And don’t even talk to me about non-compliance, which implies fault on the part of the individual if expected or desired results are not systematically obtained. I could go on and on, but I’ll get off my little soapbox now.

What I hope for in using less stigmatising and more person-centered language is support in dealing with this difficult and frustrating disease that nobody ever choses. Using language that underlines difficulty, guilt and helplessness will neither help to raise awareness about diabetes nor support people who live with it.

If health care professionals, insurance companies and media were reminded that we are, indeed, individual people who have different backgrounds, preferences, views, hopes and experiences then we each might feel more empowered and capable of dealing with the crap that this disease throws at us. Ultimately I believe that the language we use can improve our health and wellbeing.

 

 

Comparing emotions with D and CD #DblogWeek

Day 2 of #DblogWeek already !#DblogWeek already ! Today’s topic prompt is “The other half of diabetes”:

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?

When naming my blog, I knew that I would write more about life with diabetes than with celiac but I still wanted to acknowledge the impact that both diseases have on my life. What I have been surprised to observe over the last 2 years of sporadic writing here (today is the 2nd anniversary of my blog!!) is actually how little I had to say about life with CD.

What do I mean by that? Well, both diseases affect my life every.single.day. And yet, celiac does not take the emotional toll that diabetes does. Why is that? Well, maybe I should be more specific. It no longer takes the emotional toll that diabetes does.

When I was first diagnosed with each (a year and a half apart), my honest first emotional reaction each time was relief. Relief that what had been making me so sick had a definitive diagnosis, a name and a treatment (no matter how much that treatment happened to suck!). I also intelectualised quickly that while the CD determined what I ate (or didn’t eat, as the case may be), the diabetes influenced the timing and quantity of my meals. I suppose these are coping mechanisms.

Celiac is a more black and white disease. The treatment is a 100% gluten-free diet. That means not a crumb, not using the same toaster or the same serving utensils used for gluten foods, and in some cases, making sure that food has been processed in a gluten-free facility or at least a gluten free line. It’s a lot of knowledge to have about food ingredients and you have to stay current as manufacturing and ingredients lists can change.

It has a ridiculously steep learning curve both in things you need to know and ways to cope emotionally. You have to re-learn how to eat, how to shop, how to think about food, how to enjoy a meal with friends, how to trust someone else to cook for you, how to ask the right questions at restaurants, how to leave the house without the fear of being “glutened”… My diabetes managment all but disappeared during the first 8 months or so of dealing with celiac, and the connections that I wrote about yesterday were far more celiac than diabetes oriented during that time. Only once I had reached a plateau of sufficient knowlege and coping with CD, was I able to start dealing with both diseases.

An important aspect in the emotional toll for me, is that there is no self-judgement with celiac (the judgement is reserved for people who think I do this to follow a fad) and there isn’t any guilt. There can be sadness, especially at first, for what you have to give up. But personally, I am rarely touched emotionally by what I cannot eat. I don’t know if it’s knowing how sick I get when I am accidentally glutened or if it’s just that the whole 100% gluten-free thing is clear cut enough not to be questionned. And there are results. As long as I am gluten free, I have no symptoms and no clinical signs of the disease since the flattened villi in my intestines has grown back.

Diabetes, on the other hand is all about (striving for) balance. Some insulin, not too much, well calculated and at the right times. Some carbs, not too fast-acting, well calculated and at the right times. Some exercise, planned in advance, preferably the same amount at the same time each day… Learn how to handle the stress that life throws at you and stay vigilant to make sure your diabetes devices are always in perfect working order.

And even when I do follow all the “rules”, my blood sugar doesn’t necessarily follow through with the results I’m looking for.  I get a few appointments with a specialist each year which can feel like the quarterly judgement for all moments I haven’t been perfect. But even the medical professional judgement is nothing compared to the self-judgement that happens daily as blood sugar levels spike and fall.

Diabetes “results” are also a lot less tangible. Whether or not my overall diabetes management is on target and whether or not I’m coping well currently, my blood glucose levels still go high and still go low, which influence hormone levels in my body, which influence emotions, which influence blood glucose levels… and on and on.

So 19 and 18 years later respectively, diabetes takes up much more of my mental and emotional space than CD. Most of the time I manange to cope well but there are definitely times when other aspects of my life take precedence and coping with chronic illness no longer has enough head space to get dealt with. The only tip I have goes back to what I was saying yesterday. Sharing my story and hearing others’ stories – knowing that I am not alone in dealing with this – is the most powerful way for me to manage the emotional roller coaster.

Le Conte de trois pompes (préambule)

Je suis sur le point de m’embarquer dans une nouvelle aventure : au cours des 3 prochains mois je vais tester 3 pompes à insuline différentes. Ma diabétologue était d’accord avec moi sur le principe que choisir une pompe à insuline sur description papier était difficile – même quand on a eu la possibilité de les manipuler un peu. Pour être sûre que mon choix portait sur la pompe qui allait me convenir le mieux, je lui ai demandé si je pouvais essayer chacune pendant un mois. Elle m’a fait les 3 ordonnances nécessaires.

Pour comprendre à quel point ça représente une rupture dans mon traitement du diabète au quotidien, il faut savoir que je porte la même marque et le même modèle de pompe à insuline depuis bientôt 13 ans.

Vous pourriez penser que je n’aime pas le changement ou que j’ai peur des nouveautés. Au contraire. Je suis plutôt une “early adopteur” en ce qui concerne la technologie. D’ailleurs, j’ai eu ma pompe Cozmo, première “Smart Pump” sur le marché, le premier mois de sa disponibilité en France, en août 2003. J’étais une des premières personnes en France à l’avoir et je suis une des dernières à la garder. Elle à été retiré du marché en 2009 après que Smiths Medical ait perdu le jeu des brevets contre Medtronic.

Si j’ai gardé cette pompe 7 années après sa disparition du marché c’est surtout à cause du fait qu’aucune pompe disponible depuis ne m’intéresse autant que celle que je porte déjà. Mais, enfin, il y a du changement dans l’air. Trois nouvelles pompes sont apparues en France tout récemment. Chacune a des points très intéressants qui les mettent un peu à l’écart des pompes disponibles jusque là.

Elles sont : CellNovoOmnipod et Accu-Chek Insight

 

Une pompe patch avec une toute petite tubulure et tournée déjà vers les études de pancréas artificiel, une pompe patch sans tubulure du tout et bien apprécié dans d’autres pays depuis des années et une pompe plus classique qui a une cartouche pré-rempli facilitant grandement le changement de réservoir ! Elles sont toutes les trois étanches et toutes les trois télécommandées ou télécommandables donc pas besoin de manipuler la pompe directement au moment du repas. Ces éléments sont que le début des nouveautés et des points forts de ces pompes.

Cela dit, les points forts mis en avant par chacun des fabricants sur leurs sites web ne parlent pas de la vie réelle avec la pompe et l’utilisation de ses fonctions au quotidien. Sur papier, je sais déjà que certaines fonctions vont me manquer par rapport à ma pompe actuelle. D’autres fonctionnalités vont me plaire moyennement tels que le changement de bandelettes d’analyse glycémique, le gaspillage d’insuline, la tablette de pilotage de pompe lourd et encombrant…

De plus, de nombreuses questions restent encore en suspend comme l’analyse des données historiques disponibles sur la tablette de pilotage ou sur logiciel compatible, la facilité d’utilisation au quotidien, ou même le niveau de confort de porter chaque pompe. Ne parlons même pas de la place nécessaire sur ma table de chevet pour brancher et recharger les parties que le nécessite !

Mon but est de voir la pompe qui convient le mieux à mes besoins et à mes préférences. Et si aucune des 3 fait l’affaire pour moi, ma Cozmo restera au fond de mon tiroir en attente ! Suivez moi au cours des prochains mois pour mieux connaître ces pompes nouvellement disponibles en France et pour voir si j’arrive à me détacher de ma chère Cozmo.

3Cozmos

19 years

My blog has been dormant for a number of months. This is partly due to non-diabetes related ill health. As anyone with diabetes knows, physical stress can make blood sugar management extra challenging. Being Real People Sick means not only dealing with the symptoms of whatever is ailing you, but also often means chasing BG levels because any sense of pattern that might have existed is completely gone. Sometimes it can take a while for things to get back on an even keel, diabetes-wise, even once you feel physically better.

This was true for me when I first got sick at the beginning of the year. I had no appetite but was still chasing highs that were not carbohydrate related. I was wearing my CGM, and doing lots of finger sticks on top of that. When my GP asked me the ever-awkward question of “how is your diabetes through all this?” My answer was a meaningless “fine, I guess” because I was testing and correcting as necessary so although it required more effort than usual, I wasn’t particularly concerned about it either.

Fast forward almost 3 months and unfortunately I’m still not well. I’ve spent a lot of time in drs offices and having tests done. I’ve had one diagnosis, which may or may not have resolved itself, but still have symptoms that as of yet have no known cause. Is it related to my celiac disease? To my diabetes? Some other autoimmune disease? Something else entirely? Mostly I’m in a lot of pain in my chest and abdomen. Pain is not good for blood sugars. It isn’t good for patience either. And as it has become chronic and I’ve become tired of dealing with it, I’m definitely less on top of the “testing and correcting” than I was as well. I’m tired of not feeling well. I’m tired of not knowing why I don’t feel well.

I’m tired of not being able to do be active because as soon as my heart works harder my insides hurt. That has made a difference in my insulin sensitivity of course too. Between sensitivity changes and physical and emotional stresses I need some major re-calculation of basal rates and insulin to carb ratios. But I’m putting a lot of energy into non-diabetes health for a change and there doesn’t seem to be much energy left to take care of D-management on top of that.

It wasn’t until last night’s #GBDOC tweetchat on blood glucose logging that I realised how much I had slipped on being on top of my diabetes management. I rarely actually log my finger stick BGs but I do usually make an effort to download dexcom data every 2 weeks or so to keep a tab on things and make any necessary adjustments or see where I need to pay closer attention. But last night I checked and my last download was the end of January.

Once again, I am reminded of the powerful force of the diabetes online community. Talking with other PWD, other people who get it, can make the difference between knowing that I’m not doing all that I am capable of at the moment, to realising that I can actually take action and begin to turn things around. There were no specific pep-talks but just being able to share experiences and feel the connection and automatic understanding gave me a huge boost last night.

Today marks 19 years of living with diabetes for me. 

Some years I have celebrated how healthy I am despite (and perhaps even in some ways thanks to) diabetes. Other years I just mark the day in some small way.

champagne

This year I’m acknowledging both the health and the diabetes burnout that has crept up in these last 3 months. I’m also acknowledging that the difficulty in managing my blood sugar lately is not just because of burnout but also because of physical illness. In other words, the stubborn highs that make insulin seem like water are not.my.fault.

Actively participating in the #DOC has helped me through some rough patches before. Tweetchats and blogging are perhaps just what the doctor should order. In only 24 hours, a tweetchat, a dexcom download, a diaversary and a blog post later, I’m definitely feeling better about being more engaged in my own diabetes. I will try to keep this up tomorrow. 19 years later, one day at a time.

Low

Slow motion

Fuzziness

Sounds, too sharp, annoy me

Please stop breathing so loudly

Maximum concentration to make the neurons talk to each other

I know I am low

But moving from my chair is impossible

Thank you for the orange juice

DX Berlin – Forum d’échanges sur le diabète

DXBerlin

Début juin, j’ai eu la chance d’être invitée à Berlin par Abbott (vous savez, les fabricants du lecteur Freestyle Libre, entre autres) pour passer le weekend avec un groupe de bloggeurs européens. Vous pouvez revisiter les tweets du weekend via le hashtag #DXBerlin. Les opportunités du week-end étaient multiples :

  • “réseauter” avec d’autres personnes atteintes de diabète
  • comparer nos expériences dans nos pays respectifs
  • explorer notre utilisation des réseaux sociaux
  • parler de notre quotidien avec la maladie et notre contact avec d’autres personnes atteintes, soit sur la toile soit en face à face
  • rencontrer les équipes de chez Abbott qui sont en contact avec les utilisateurs

Le weekend était un bon mélange de temps social et temps d’apprentissages. Le vendredi soir en arrivant, on était emmenés direct dans un bistrot pour l’apéritif suivi de burgers (ou salade et burgers sans pain pour les sans-gluten parmi nous). J’étais ravie de retrouver des bloggeurs déjà rencontrés lors d’autres évènements : Jen, Ilke & Finn, Matthijs, Sacha & Bastian et d’en rencontrer d’autres pour la première fois : Laura, Mel, Kris, Daniela, Sue, Francesca, Sarah, Linda, Hein, Patricia, Antje, Guillaume, Marcel, Oscar, Manuela et Sophia.

(Si vous voulez consulter les blogs des autres participants à ce weekend, je recommande d’utiliser google translate. Ca ne donne pas une traduction exacte, mais ça permet de comprendre le gros du message. Je trouve toujours intéressant de voir ce qui se passe dans d’autres pays européens concernant la gestion et traitement du diabète.)

Le lendemain matin a commencé tôt avec un peu de sport. 4 personnes ont trouvé le courage pour se lever à 7h et aller courir dans les rues de Berlin. Un moment convivial et un bon moyen de visiter une ville que je ne connaissait pas.

BerlinRunwm

Les ateliers de la journée ont commencé dès 9h et la journée était remplie de présentations aussi diverses qu’intéressantes. Gemma nous a raconté l’histoire de la transformation de son blog, d’un hobby vers une carrière.

Ensuite Mary nous a parlé de l’utilisation d’instagram pour partager des photos et diversifier sa présence sur les réseaux sociaux. Nous avons également eu l’opportunité de jouer avec le tout-nouveau instagram-cam, une version très moderne du Polaroïd !

InstaCamwm

Bastian nous a présenté la communauté en-ligne du diabète en Allemagne (#DeDOC), qui s’est beaucoup développé au cours des 3 dernières années. Pour ceux qui connaissent #FrDOC, le tweetchat #DeDOC est basé sur les mêmes principes et se passe chaque mercredi à 21h. Au cours du week-end, j’ai discuté avec Bastian et Guillaume, un français qui vit à Berlin, sur les challenges dans l’animation des tweetchat #FrDOC. Avec leur soutien (et le votre, j’espère !), nous allons remettre en route le tweetchat à la rentrée et essayer de dynamiser les échanges en ligne de la communauté diabète en France.

En début d’après midi, nous avons écouté Maarten den Braber parler du “Quantified Self” – un concept pas si nouveau pour nous qui vivons avec le diabète depuis longtemps. Nous pouvons être considérés par certains comme les pionniers de ce mouvement, mais il est intéressant de voir les outils disponibles aujourd’hui et ceux en cours de développement pour suivre des indicateurs de santé.

Pour continuer sur la “quantified self”, Etai Granit nous a présenté son projet de BitBite qui analyse l’alimentation via la mastication. Un outil plus qu’impressionnant !

Nous avons même eu une présentation (via vidéo) de Claudio Pelisseni, un italien est en train de faire le tour du monde en 1000 jours, sans prendre un seul avion. Depuis son départ il y a un an, il a déjà parcouru 48 000 km et 16 pays.

Finalement, Sofia Larsson nous a présenté le concept et les vêtements de AnnaPS. Cette entreprise suédoise à été fondée par Anna, frustrée de ne pas avoir de moyens confortables pour porter sa pompe à insuline. Les vêtements sont fait de Tencel, “un tissu aussi respirable que la laine, aussi brillant que la soie et aussi doux que le coton”, nous dit Sofia. Pour avoir déjà acheté sur leur site, je peux témoigner du confort des vêtements !

A la fin de la journée, une partie du groupe est retournée à l’hôtel en vélo, ce qui nous a permis de visiter encore un peu et de voir une reconstruction d’une partie du mur de Berlin. Moment émouvant.

BerlinbybikeAndreawmBerlinbybikewmBerlinWallwm

Et puis le soir on a profité de l’ambiance berlinoise car le match de finale de la ligue des champions se jouait sur place. Nous avons fêté cela à Hofbräu Berlin où il y avait autant de supporteurs espagnols qu’italiens et un vrai esprit de fête pour tous.

BierHauswm        Ilke

Le dimanche matin, le week-end s’est terminé avec un brunch et l’occasion d’échanger avec l’équipe d’Abbott sur leurs produits, les processus de fabrication et l’utilisation des produits par nous, les personnes atteintes de diabète. Je remercie Abbott pour l’opportunité de participer à cet évènement. J’ai beaucoup appris et j’ai apprécié pouvoir échanger avec d’autres personnes engagées au sein des communautés diabète dans leurs pays respectifs.

DXBerlinGroup

Je suis rentrée avec une énergie nouvelle pour continuer mon engagement à la fois on-line et off-line en France. (La preuve, avec un billet de blog en français, le premier depuis plusieurs mois!)

Encounters of the diabetes kind

I just spent a couple of days in Oslo, Norway on a business trip. Things were very busy leading up to my trip and I hadn’t really paused to think about the fact that I was going to a city and country I had never been to before. Nor about the fact that I “know” a Norwegian. I put “know” in quotations as we hadn’t ever met in real life but had been conversing for years on an online diabetes forum.

When I finally got to my destination I thought about what I could do with the very few hours of free time I had before and after my meetings. It was only then that I contacted my Norwegian friend to ask if she actually lived in Oslo. She did, and as it turned out, she was free to meet up the following evening, just at the time that my meetings were ending.

We didn’t plan anything overly exciting but we sat for an hour and a half at Starbucks talking diabetes, of course, but not only. We talked about family, work, travel and bi-culturalism as if we had been close friends for years. But in reality, we haven’t been in close contact lately as the forum that brought us together originally was about diabetes and pregnancy and our respective kids are now between 9 and 4.5 years old. I love the power of the internet and social media, that we can so easily create a network of contacts and friends all over the world at a few clicks of a mouse or taps and swipes on a smartphone. But there is a different level of magic when those conversations and friendships are taken off-line.

On a completely different level, I had one more encounter with diabetes in the wild before I left the country. I was standing in line to go through security at the Oslo airport on my way home. As the queue snaked forward, there was a counter space that people could use to organize the things that need to be taken out of carry-on bags to go through the x-ray machine. I happened to glance up as I passed on the other side of this counter and saw a young woman putting a glucose meter and insulin pen in a clear plastic ziplock bag.

My first thought was -” that’s strange, I’ve never taken my diabetes paraphernalia out of my purse for airport security, unless asked”. The fact that I was looking at another girl with type 1 was only my second thought. I smiled at her and she looked a little bewildered. Not sure how much was her stress about travelling with diabetes and how much was the fact she had no idea I had diabetes and therefore why this strange woman in line was smiling at her. So I took my pump out of the pocket of my jeans and held it up to her.

I saw the recognition light go on in her head and she fired off some very rapid Norwegian about “no pump” – at least those were the only words I caught. Then the line moved on but I felt empowered by the mutual understanding of the stress of travelling with diabetes and that I wasn’t the only one in that line wondering if I would be pulled aside to be asked about my diabetes kit.

Oh, and if you are ever in Oslo, the Vigeland sculpture park is a must see. The sculptures and statues blew me away in the emotion that they conveyed. I only wish I had a better camera than my iPhone 4S to capture the beauty.

VigelandChildonBackwmVigelandOldLadieswm VigelandcouplewmVigelandWomanBabywm