Thursday, July 14, 2022

Individual


Are you the stereotypical diabetic? That question should light a fire in your gut because it is laden with problems. Let's ignore "diabetic" for this blog post, feel free to insert your own preferences in place of that word, and instead focus on the stereotypical part.

Stigma surrounding diabetes is frequently found in most corners of the Internet especially the social media platforms but, it is often heard and experienced in the real world too. 

"You don't look diabetic"

"You're too old to be a Type 1"

"Complications? I guess you didn't take care of yourself!"

I'm sure that you've heard of one or two of those, maybe experienced some personally. They're very thinly veiled stigmatising and mean remarks. You may have challenged them or you may have turned the other cheek - it is very difficult to challenge a stranger on any comment, most humans prefer a non-confrontational life and I wouldn't judge anybody for ignoring comments which promote ableism. You don't need to be brave all the time.

We're brave(r), of course, on the Internet. It's easier to challenge from behind a screen and sadly it's just as easy to dish out the horrible comments. I've been the victim of a few comments in the last 5 years on Twitter. A few were brave enough to tweet me directly, others preferred to subtweet and in one particular case embark on a prolonged period of stalking and accusations - all without names of course because even Internet bravery has a limit when you're working for a diabetes charity and a self-styled advocate for all "PWD". 

However, stalking and bullying is a slightly different subject to today's blog. Stigma is also slightly off-topic although it plays a large part in the views which many form of the "stereotypical diabetic". Individuality is a great thing - a wonderful, beautiful and educational thing which should be encouraged and embraced by us all.

Cheesy stuff, huh? Although, it's true! If we all accepted each other as different, that there is nothing to fear from differences, then that's stigma buried. It may bury a lot of hatred, too. It's very easy for me to write such a solution but I very much doubt I'll witness such as shift in thinking by society in my lifetime. Still, the encouragement of it might just reduce some of the more hateful things in life eventually. 

Individuality doesn't end at the door of stigma and being kind. I firmly believe we need that in healthcare circles. It's probably right to say that about every aspect of healthcare and it's probably right to say that most HCPs treat patients as individuals and with the greatest kindness. It might also be right, if we consider diabetes, to say that we're not always treated as our brilliant, unique selves. Why not?

There are guidelines and criteria to start with. Every good HCP will want to follow the lead of their... lead? for fear of reprimands - in whatever form they might come. So, when a guide is published the good HCP will do as the guide suggests even if they know it to be incorrect and potentially putting themselves in an awkward position with patients. That's alright, though, because a patient might only have a moan or take up more time at an appointment and that's far more preferable to a reprimand. And what do patients know anyway?! Hmm. Well meaning guides probably fall behind criteria when it comes to impacting on patients. Thankfully, we're seeing some criteria changed or relaxed when it comes to access to some forms of diabetes technology but it wasn't very long ago that I experienced the cold refusal of "because criteria" and it seems to still be floating around today despite changes no longer being new news. 

"We need this and that..." says the advocate.

"They need this and that but only if..." says the criteria.

Using "we" and "they" so generously has never sat well with me unless, of course, every diabetic it relates to has been consulted. That's impossible! But, research!...

"But the research says...."

I just found out that 100% of people love coffee. I have solid research on the subject, sample size: 1 - me!

Do you see where research ceases to be research if numbers are small? Let's say, for example and completely randomly, 800 people were researched about communication in relation to their diabetes, 600 came from a charity in one country, it was all done on the Internet and via the charity's own web site with questions and even answer options created by the charity. The data? collected by the charity. That's then cited as good, global research. There are approx' 500 million people living with diabetes globally. It's not really research, is it? I've got two legs and I can run if the buffet is open but I'm not really an Olympic sprinter. 

So, we know research needs to be done properly and if you have a little look around you might be surprised at what passes the "Good enough" test.

Perhaps, as some undoubtedly already do, HCPs who treat patients based upon their individual needs and facilitate access to whatever is available are some of the true pioneers of the diabetes technology revolution and the modernising of diabetes care. You don't need a guide, ask us. You don't need criteria, use your brain and your heart.

As you might have seen, a conflict has broken out in Ukraine as Russia has invaded that country. The scenes on TV and on social media are horrifying. What can we do? Well, I don't think there is a wrong way to help if you donate to charities who are active in helping the people of Ukraine. I support many charities but one which has always had my heart is MSF. Medecins Sans Frontieres translates as Doctors Without Borders. When it comes to the health of others in disaster areas, war zones and the like then I think we all have a duty to do what we can to help and help those who directly help! such as MSF. With that in mind, all donations to me via Buy Me a Coffee and all the pennies generated through the ads dotted around my pages will be donated to MSF. I will make up the difference for the fees taken by PayPal and Buy Me a Coffee. That will run until further notice, no time frames and possibly until Ukraine is a free country again. Thank you for reading my blog. 

Sunday, July 10, 2022

Take It Easy


A couple of days ago, I tweeted about Time In Range. It was a tweet inspired by my previous week of blood glucose data which saw six days of fabulous numbers then one day of less than fabulous. As day 7 progressed and I struggled to establish a BG under 10, I felt the frustration build. My 24hr TIR was 33% and I was beginning to get pretty irritated by what I was seeing. Perhaps that is something you've experienced? Our hard work can pay off on one day then the same hard work just will not yield the same results on another day. Annoying, huh?!

Prior to that TIR tweet, I had recently been involved in many discussions surrounding research. I'm rarely dismissive of any single person's experience unless it is dressed up as research. It is pretty difficult to accurately conclude a study based upon your own data, your own research of... yourself! There are tonnes of problems with that from having the absolute minimum in sample size to your own biased, skewed, point of view. Research should involve big numbers, where possible. Many aspects of Diabetes are researched to form what is deemed as a good opinion or even safe advice. Not all of that "research" has been conducted adequately to form a good conclusion. I'll leave it to you, reader, to discover the shoddy research which backs some aspects of Diabetes. Back to TIR!...

...and big numbers, your research, should apply when you're concluding how things are going in regards to your own management and your Time In Range. So, after the initial frustration of 33% TIR I made a coffee and had a few biscuits (bolused for, ofc) and relaxed. One poor day doesn't represent how hard I work to take care of my T1D. The same could be said for any period, really. A bad year isn't enough data to determine how hard you work to take care of your lifetime with T1D - maybe that bad year is only 2% of your time with T1D and you've been living through a pretty rough 12 months, personally? Perhaps there isn't an obvious reason because, as Diabetes loves to prove, there are very often no apparent reasons for what's going on.

The title of this blog post is Take It Easy and I think it's time for me to worry less about day to day fluctuations in my Time In Range. I have a lot of history and TIR data since using an insulin pump. I know that I float around 77% - 80% and I know that is a pretty good level of management so, why should I stress about a very tiny snapshot in time? I'm certainly going to try to be less of a drama llama about the numbers in future and try to remember my own words; you'll never be a perfect diabetic - there is no such person. Easier said than done! but I'll try.

I wonder if I/we worry about the wayward days because of the nature of our condition. Essentially, our body is attacking itself and we have no control over that happening despite it being OUR BODY! That's the crazy thing about this autoimmune disease; We have absolutely no say and no control in it happening. When it's here, we're left with trying to manage it to stay alive and stay well, no easy task. Perhaps now we have the tech and the data to establish some form of control, we think we can tame the beast every single day. Maybe we tame the beast so well, so often, that when we do have a wayward day it feels far more stressful and worrisome than it might if we were managing our T1D via guesses and infrequent finger pricks. 

All our technology and information is massively helpful (to me, at least) but it doesn't guarantee perfection, it is certainly not a cure. 

So, I'll end this short blog by encouraging you to not beat yourself up over your Diabetes and everything related to it. You will make mistakes and you will do everything right - that's called being human. Doing your best as often as you can is all you should aim for. Your best is not the T1D management of somebody else. You do you.

As you might have seen, a conflict has broken out in Ukraine as Russia has invaded that country. The scenes on TV and on social media are horrifying. What can we do? Well, I don't think there is a wrong way to help if you donate to charities who are active in helping the people of Ukraine. I support many charities but one which has always had my heart is MSF. Medecins Sans Frontieres translates as Doctors Without Borders. When it comes to the health of others in disaster areas, war zones and the like then I think we all have a duty to do what we can to help and help those who directly help! such as MSF. With that in mind, all donations to me via Buy Me a Coffee and all the pennies generated through the ads dotted around my pages will be donated to MSF. I will make up the difference for the fees taken by PayPal and Buy Me a Coffee. That will run until further notice, no time frames and possibly until Ukraine is a free country again. Thank you for reading my blog. 

Sunday, July 3, 2022

Waking Up and Getting Up


If your brain is singing "has never been easy, oh oh..." then you're my kind of person. If you're wondering what on earth I'm referring to then search "Elastica songs" in your Google.

Sleep! Yes, that most precious of things. We might joke about the amount we get (or don't get) and even take to our socials to have a good old vent about a nighttime hypo or a stubborn hyper, stealing those much needed hours of rest. sleep loss seems very common amongst the diabetes community, especially for those living with Type 1 but is it addressed enough in clinic? it it taken seriously by our HCPs?

You might remember my Path To Pumping journey (I really dislike "journey" it feels very X-Factory) and the many avenues which I explored to get the NHS funding I needed for a pump. The appointment which resulted in me gaining funding contained a conversation where I spoke about sleep. I detailed the frequent dawn phenomenon, the higher incidents of nocturnal hypos while on MDI and how, since using a donated pump, I have noticed far more nights of uninterrupted sleep. The good doctor seemed to take that information on board and it felt great to have an HCP grasp the importance of regular sleep.

Diabetes aside, I have a wonky shoulder (not frozen) due to Osteoarthritis - that can often make sleeping difficult, especially as I'm a "side sleeper". I've learned to manage that particular complaint although it still gives me a sharp reminder from time to time. Multiple complaints can make sleeping almost impossible - I know that from talking to some of you guys and the issues you face in that dept. With that in mind and with the well documented issues caused by sleep loss, I think it's important to bring the issue to the table at your diabetes reviews and why not? If diabetes is causing you any level of distress such as frequent hypos, hypers, burnout, depression, etc then you'll probably ask your HCPs for some help. Sleep loss should be acknowledged and given some attention.

What causes your sleep loss might be a single thing but you might be so conditioned to living with it that you haven't bothered to bring up the subject. For example; perhaps you're on MDI and you're having 15 nocturnal hypos per month. So, half of your nights result in broken sleep. I know that to be a thing for some of my peers and I'm astounded at their ability to function let alone go to work the following morning. The solution could be a simple tweaking of a basal dose or a change of insulin... or maybe you'll benefit from being on a pump? which could reduce your basal dose for you at those frequent hypo times - that's what happened to me and my relatively low nine hypos per 90 days has been reduced to five or six.

The result of more sleep is profound. The main difference for me is my mood. I have always been a pretty relaxed chap but since using a pump, since getting more regular sleep, I can't remember the last time that I felt irritated by any life events and I've had a pretty testing year or two! as I'm sure most of you have. Is that related to more sleep or more stable blood glucose? I think, probably both. They're definitely strongly linked.

Perhaps your blood glucose is generally stable while you sleep? Excellent! but maybe your worries over your diabetes keep you awake? Not so excellent. Can that be addressed? Absolutely! I think most of us have tossed and turned at night because our brains are all "You made an idiot of yourself at work 24 years ago". With diabetes, you're probably worrying about more serious things. Complications? I think about those from time to time, too. There are ways to ease those worries and you might benefit from talking to a psychologist. If that seems like a big reaction then I fully encourage you to openly express your concerns to the online diabetes communities. You will undoubtedly find some empathy there and perhaps some solutions. It is amazing how often peer support brings about a positive outcome! 

Sleep is a vitally important part of life and we shouldn't live with exhaustion unnecessarily. Talk about your own sleep loss and pursue a solution, I promise you will feel a million times better about life when you're well rested.

 As you might have seen, a conflict has broken out in Ukraine as Russia has invaded that country. The scenes on TV and on social media are horrifying. What can we do? Well, I don't think there is a wrong way to help if you donate to charities who are active in helping the people of Ukraine. I support many charities but one which has always had my heart is MSF. Medecins Sans Frontieres translates as Doctors Without Borders. When it comes to the health of others in disaster areas, war zones and the like then I think we all have a duty to do what we can to help and help those who directly help! such as MSF. With that in mind, all donations to me via Buy Me a Coffee and all the pennies generated through the ads dotted around my pages will be donated to MSF. I will make up the difference for the fees taken by PayPal and Buy Me a Coffee. That will run until further notice, no time frames and possibly until Ukraine is a free country again. Thank you for reading my blog.