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Monday 22 July 2013

When People say stupid stuff

One of the things I struggle with most when dealing with diabetes is how much of a 'public' disease it is. Everyone has a view on diabetes. Sometimes its very hard to make people see ours - that the person WITH diabetes - as the most important view of all.

Diabetes requires a lot of micromanagement, and endless doctors, educator, endo podiatry, optometry and more appointments. Every one of these health professionals have their own view on how we should be treating our diabetes. They are all right and they are all wrong. I'm ok with these viewpoints because I seek them out. I want to know their opinions, and when I don't agree I feel like I can discuss this with them.

What I don't want is unsolicited opinions. They are never beneficial. They are usually judgemental and rudimenatry views established from watching too many 'A Current Affairs' stories on the 'diabetes epidemic' - you know the ones I'm talking about; where they talk about type 2 the whole time and bad eating habits, but then show the little kid with type 1 running around in a field of daisies at the end.

I've seen a lot of them on food posts lately  - someone bakes a yummy, sugar laden cake and you can bet that in the comments somewhere the typical 'diabetes in bowl' will spring up, fully laden with pain, hurt, resentment and embarrassment for the diabetics actually reading it. It belittles and makes a joke of a serious disease.

I get a few from people out loud. I was happily counting my carbs at a cafe the other day (I do this outloud as I tend to be able to keep track more), when I got the comment "That's no way to live". Actually, for me, it is the ONLY way to live. Thank you and mind your own effing business.

So why do people think they can have an opinion on diabetes and parade it around without living with the disease itself? Please, please don't. (This is probably going to sound rude, so I apologise in advadance.) Why diabetes? Is it not a serious, lifelong condition? You would never hear anybody say anything about cancer or any other disease, except to acknowledge that the person with cancer is suffering and to offer words of support and encouragement. Even if the person has lung cancer caused by smoking. Do we get public support? Sometimes, but those voices are far overshadowed by the ill-informed loudmouths. We get told it's our own fault, and we should live with it. So we should obviously suffer everyone's hideously misinformed opinions (which some people like to express quite loudly when they know they have a diabetic in earshot, or just to your face). STOP STOP STOP!!!! We have feelings. Even though we know it isn't our fault (Type 1) we still feel ashamed, some of us still hide our disease (at a detriment to our own health), because of all the public misconceptions and the ridicule we might encounter. Even in the case of lifestyle-induced type 2 diabetes, they don't deserve that embarassment. Can you honestly say you do everything perfect all the time? Some people just like chocolate, so effing what???? Why is that so horrible? You will never know how they got to that stage. Everyone has a vice!

We have this disease for life. I'm pretty good at brushing ridiculous remarks off my shoulders, calling the perpetrator an uneducated twat, and moving on. Some days though, when you've had a few hypos, when your blood sugar has been givin you hell all day and you feel like dogballs, its not so easy and you might go home absolutley in tears about it. It is for life, and if you hear that sort of suff every single day, it can wear you down.

Encourage us, please.

And if you're the one writing stupid stuff, watch this, take a pointer and do it better next time.




Saturday 20 July 2013

Connect-In

Something I seem to have been discussing a lot lately with various other young D's is the lack of physical support available. We have a website and...hey we have a Facebook page. I'm not entirely sure why, but it has been decided somewhere along the line that we can get all the support we need off the internet. I've since had a talk with my DE who says we used to have stuff for young adult type 1's a little while ago, but that it was cut due to lack of funding, or something to that effect. I was given some names of people to contact to try and start something up here in QLD, but I have forgotten nearly everything she said due to a hypo in the middle of our consult, so will have to email her and ask for all those details again.

It's also pretty apparent that if you have Type 1, you should move to Melbourne. So last weekend I had the pleasure of attending the 'Connect-In 2013' Type 1 diabetes camp for 18 - 25 year olds, held in Melbourne. I wasn't too upset about the travel as I had never been to Melbourne before, so got to be a bit of a tourist whilst I was there (random domed shopping centre, cold cold cold & OMG Trams!!).

I loved it. I just love being near other betics. To say something or do something and everyone else in the room understands. In my normal life, this never happens. I know my loving man wants to understand, but unless you're betic, you really can't.

I was so excited not to be the only one in the room finger-pricking and bolusing and wondering how many carbs are in that - plus points to DA Vic for providing a carb guide for all the foods we were eating that weekend so we didn't have to count ourselves :). Actually that was great - to be able to switch off that part of my brain for 2 days was terrific! I think its something alot of us need every now and then - a weekend where someone else does our diabetes thinking for us. It gives you a nice little break so you can recharge and get back into D.

What about the program? The 1st day I didn't find overly exciting or interesting. I knew the basics of D, the basics of carb counting and most of the stuff they discussed. But it didn't bother me to hear it all again, you can never assume everyone knows the basics. I can't remember where I read the study that said something like only 5% of diabetics have a more than basic understanding of their own disease....actually maybe that number is wrong - but I was shocked at the number, it was tiny. (Note to self - find study...its probably at work somewhere). Someone please correct me if you come across it! It was only this year I think. From the 1st day I think my personal stand-out was the exercise seminar. She wasn't D but it was the only one that got us up and moving and really involved us to make us think about WHY exercise is so important - and not just cos of D. My body also really thanked the mentor - I was getting stiff from sitting so long.

The night-time activity was a good choice I think. Pizza & bowling bar. I don't normally eat pizza, but ate it anyway, so perhaps a choice of food next time. Although I could have gone and gotten a sandwich from the sandwich bar at accommodation if I had wanted beforehand. I liked that the activity was something physical to do to burn off energy - but it was a physical activity that didn't require much thought in terms of D. I just didn't bolus for my 2 soft drinks and ended up with perfect levels afterwards. We also discovered our sets glowed in the Ultraviolet lights. Exciiitement! The ability to go off and do our own thing afterwards was good as well - Hellloooo pancakes!

The 2nd day's program was much more of what I came for, all the things that seem to be happening around me now - travel, social media, etc. But the women's session scared the beejebus out of me in terms of having babies. They probably should have had a counselor with us for when they showed us the stats on complications for our pregnancies!

Actually that was something that was lacking - a 'feel good about D' seminar to explore how D has maybe enriched our lives or something more to do with our mental health? There was a sort session on burnout, but there is so much of the mental health side of things involved with having a disease like diabetes. Honestly when I think about it they could probably do a whole camp dedicated to the mental health side of D!

Overall I think it was a successful weekend. I made some great D friends, I felt encouraged to look after my diabetes because it was the norm that weekend. I really do hope the other states will catch on and set up programs of support for young adults and adults with diabetes. Knowing that you're not the only one out there can be an amazing support in itself. I'm sure I wasn't the only one encouraged into extra testing and looking after my D that weekend, so I can only think of benefits when opportunities like this arise. I know myself, I will be looking into Diabetes Queensland and seeing what we can do here, even if its something as simple as hiring a few beach cabins and spending a weekend in the company of other D's. Now that Diabetes Vic has paved the way....


Ron & Hermione during the exercise seminar 

BOWLING

Pancakes that look like ice-cream

I did in fact get pancake all over my face after I took this

Tameeka & I were excited that the door said T1

We were also exicted to see we were staying in the 'Sweet Wing', whilst plaing with our LIGHT UP PENS

I may have adopted an animas penguin called Dudley