Diabetes Survivor's Guilt

This week, I'm struggling with how society sees me and sees my diabetes and I'm struggling with the whole "what's the point in advocacy" disillusion. I’m calling it Diabetes Survivor's Guilt.

It started with a couple of events on Tuesday that left me beaten down, deflated and with nothing left to fight for the things I need to live and thrive with diabetes. And nothing left to fight the public perception of people with diabetes.

It all started with:

It began with hearing from my peers that my health service discontinued funding for a CGM for all patients who had been using it with no advance notice and no regard for those who rely on it. After the complete shut out for adults with diabetes of the Libre reimbursement scheme, I just thought: I can't do this anymore!!! 

Then, I received an invitation, one I should be excited about because it's diabetes health care moving forward and I'm very honoured to be included. But all I could think about was what’s the point? It won't get funding! It'll sit on a shelf and gather dust like so many others. I predict that two years from now we'll still be asking for the funding for it. Maybe it'll win a Pulitzer for fiction?

Then, there was a tweet from someone with a medical degree, maybe even a bunch of them, that would normally get me all fired up with “You should know better than to spread bad information about diabetes” responses but all I could think was “what’s the point?”

There’s only so many times:

There’s only so many times I can respond to the many, many misinformed tweets/comments with spunk and sass before I start to feel that there are probably five more misinformed people hiding in the shadows, so what's the point?

There’s only so many times I can listen to chatter about diabetes prevention strategies before I start to doubt what I know to be my facts. Maybe I did cause my diabetes?!?! Before I start to believe that I'm a failure because I was diagnosed.

There are only so many times I can hear that I’m costing my health service 10% of its total budget before my response goes from “So! And???” to “I’m sorry I cost so much, please forgive me".

I'm/We're fighting the same ignorance over and over and over. I'm repeating the same information again and again. And I'm/we're getting nowhere.

So What's the point?

What's the point of trying to explain to people that what I need to manage my diabetes is what I need, they are not luxuries.

What's the point in telling people that I didn’t cause my diabetes, that healthy choices won't make me cost less?

What's the point in saying I'm a person with diabetes but I'm not old, not obese, I have all my limbs and both my kidneys, no I'm not what you were expecting, when the images that are displayed to represent diabetes are contrary.

If you tell a person enough times:

If you tell a person enough times that you cost the health service 10% of their entire budget They will start to feel Diabetes Survivors Guilt.

If you tell a person enough times that their diabetes should've been prevented or reversed, you will start to believe it. Despite the truth!

If you tell me all of this enough times, not just with words but with actions also then I will start to believe that I don’t deserve empathy, understanding or treatment and maybe I’m the one who’s misinformed?

I just can't fight it today! But giving up is not an option really is it?

SoMe Support So Wrong

There are so many benefits to being a part of the diabetes online community. It’s so, so, so valuable, informative and, well, supportive. I wouldn’t have survived all these years without it. 

However, it does have a couple of major pitfalls and it can go really, really wrong. Desperately wrong. I’m talking about advising other people to take extra insulin without knowing their full circumstances.

When you think about it, how often do we actually get it right for ourselves? Let alone advise another person, who we don’t know anything about, what insulin to take to correct high glucose levels!!! There is so much to consider!

A number of months back, I came across a post in a private diabetes support group asking for advice on what to do with high glucose levels. Not a single member who commented on the post, and there were many comments, recommended the poster to seek advice from a healthcare professional. 

WELL INTENTIONED BUT MISPLACED MEDICAL ADVICE

We can be so quick to advise someone else without asking more questions about their situation and when an individual takes this well intentioned advice, it doesn’t always end well it. Taking too much insulin and stacking insulin may lead to severe hypos and even hospitalization. And the individual may not be aware of this.

When taking insulin to correct high glucose levels there is so much to consider:

• If this person is newly diagnosed and in the honeymoon period, i.e. still making their own insulin. And this honeymoon period can last up to three years
• When did the person last eat? Was it 30 minutes ago or two hours ago?
• What did the person last eat? Was it high fat, high carb, etc?
• Did the person change their activity routine in anyway? For example, do they normally do some physical activity after eating and on this occasion didn’t.
• Was this person drinking alcohol, specifically, high carb alcohol before testing?

A friend sent me this handy guide for correcting high glucose levels for sick days but it works for all occasions where your glucose levels are high.

Thank you to Eimear for this handy sheet.

 
HUGE RESPONSIBILITY

As members of the diabetes online community,  we have a responsibility to keep each other safe. To not put each other in positions of risk. This is the huge responsibility but one that must be done.

Thankfully, these situations don’t occur often and the many goods continues to outweigh the few negatives.
 

The Right to Choice in Diabetes

On referendum day last week, as people were voting, I tried to keep myself off twitter and lower my anxiety levels by catching up on diabetes blog reading.Over the last two months in Ireland the right for a woman to choose what happens to her body has been the main topic of conversation and I, like so many others, was personally invested in the outcome of this referendum. So it wasn't surprising then when I read about the launch of a new insulin pump in Australia last week that I started to think about my choices in diabetes tools and treatments, especially in insulin pumps in Ireland.

At the moment, in Ireland, we only have one insulin pump company serving the community. And as an Animas Insulin pump user with a warranty that expires month, I was a tad jealous to hear that another country was getting an additional choice while we are in such limbo.

What is the state of play at the moment with new pump choices?

Photo Credit DiabetesDad.org These devices are all insulin pumps.

INSULIN PUMPS - NO CHOICE (AS OF APRIL 2018)

Before I go ranting off, I do know that we are luckier that most because we have a government who provides us with the absolute necessities to stay alive with diabetes but that doesn't mean we should be excluded from choices or better treatments/devices simply because they cost more. The “cost” needs to weight against the health benefits AND our quality of life value.

Since the exit of Animas from industry, we currently have only one company providing insulin pumps in Ireland. The Irish health service invited tender applications for a new pump contract last November but we have no further communication beyond this from the health service. We don't know how long it will take to decide or make an announcement on the new contract and if it will be to one company or multiple companies. Not only that but the companies who applied to be considered are forbidden from contacting the health service for any updates also. (!!!!!) 

I’m rooting for multiple companies for competitive fairness and to encourage increased engagement with the patient community to serve their customers better.

WHY CHOICE IS IMPORTANT FOR ME?

There are huge disadvantages to only having one insulin pump company serve our community. We need choices because all insulin pumps are different and I need to be able to choose the one that works best for me. Not just the insulin delivery part but the easy to use factor and the easy to wear factor. This device is attached to me 24 hours per day so it is hugely important that it is comfortable to wear and easy to use.

We also need choices because if we don’t have choices then manufacturers don’t have to be competitive in pricing (see below on insulin choices), don’t feel compelled to make improvements to the products and definitely don’t have to listen to their users.

Here’s a list of insulin pumps we DON'T have in Ireland:

• Tandem T-Slim
• Omnipod
• YpsoPump
• Medtrum patch pump
• Roche Accu-Chek Combo
• Cellnovo
• Sigh!!! :-(

Insulin Pumps available in Ireland at the present time:

• Medtronic 640G
• MiniMed Veo
   

THE CHOICES WE DO HAVE

Blood Glucose Meters - Loads of Choices

When it comes to blood glucose meters I have so many choices. They all do so many different things, some come with Apps, some with wizard tools and switching is easy. We have Ascensia, Accu-Chek, OneTouch, Freestyle, TrueResult, and so many more.

There is one to suit every person with diabetes and their needs. 

Insulin’s - Some Choices

There are a few of choices of modern fast acting insulin and a few choices for long acting insulin. So choice here is limited because not many companies in the world manufacture it, oddly, given the huge profit margin it has in some countries. Yes I’m talking about you, the disfuncional and ridiculous American healthcare system.

Ultimately, I can experiment with all of these insulin’s to find the combination that works best, so the choice of insulin’s is fairly good.

Continuous/Flash Glucose Monitors - Some Choice … if you can afford it.

This might be a little contentious because a lot of these choices are dependent on being able to afford them. If you can’t afford any of these devices financially then you have very little choice because The Irish health service decides if you should get one or not.

However, if you can afford any of these you have the choice of three devices with possibly two more companies coming into Ireland soon.

See more here on CGM Funding Options

Waiting Patiently

For now I am waiting patiently on news from the Health Service and continuously contacting the insulin pump companies even though I know they will be the last to be informed. However, I am sitting on an email address within the health service to contact for more information and I don't think I'm excluded from doing so as a concerned consumer!!!!

25 years with diabetes and I still haven’t cracked it

You would think that after 25 years of living with diabetes I would have gotten the hang of this diabetes craic! That I would never forget to take insulin before I eat or check glucose a lot!

Yet, for the second time this year, I left home for the day and forgot my blood glucose meter. Despite the fact that Every single day, multiple times a day, I leave my house and ALWAYS grab my keys, phone and my meter which also contains my glucose tablets. I, even keep all three of those things together.

NOTE: I did have my CGM so I could still bolus insulin to a number and that was important because it was a family party with trifle, profiteroles, pavlova and cheesecakes. And. They. Were. YUM!

And twice this week I forgot to pre-bolus for breakfast.

Then there was the time I forgot to refill my insulin reservoir and went out to a big pasta dinner.

I’m beginning to think that since I hit this 25th Diaversary that this diabetes craic is getting old, along with me, that I’m starting to feel the same way about Diaversaries as I am about my birthday. And that’s, “Meh! It’s time to stop counting.”

Twenty five years: It seems like a long time and yet, sometimes it doesn’t.

It seems like a long time.

It seems like it’s been forever because life before diabetes was before two children, before marriage, before travel, even before employment. I've done a lot in 25 years!

It seems like a short time.

Thanks to social media and my local support group I know LOADS of people who’ve lived with diabetes for much longer. I’m usually not the person in the room whose lived with diabetes the longest.

I even know a bunch of people who have survived 50 years and then some. I use the word “survive” there because if you had diabetes before blood glucose meters were around it is a miracle that you are still here.

It seems like yesterday because I can remember life before diabetes. However I am wondering how many more do I have?