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| Me wearing sunglasses and a black hoodie, standing in a field with a line of trees in the background on a bright and sunny day. It looks like summer is coming to an end in the UK. At least, the super-hot days have been replaced with warm days and decisions to make about what clothes to wear when you venture outside. Hoodie's cover many bases and that's what I chose to wear, in the photo above, while on Day 2 of my Steptember Challenge, yesterday - more on that later in the blog post. You may have already heard about my story of sight loss and subsequent visual impairment. It must be around 15 years ago when I was first told "You need lots of laser surgery" followed by panic, appointment avoidance and, 3 years later, a rushed appointment to Eye Casualty which ended with "I'm going to be seeing a lot of you". He (my eye surgeon) was right. I was in the operating theatre several times from 2010 to 2012 and then again to fix ocular hypertension in 2014. For 18 months of my life I was almost entirely blind and unsure if I would ever regain any sight. I'm not here to repeat my eye complications story, today. The experience changed me and, to be frank, had I not regained any of my sight then I'm not sure where I would be or if, indeed, I would be here at all. I'm grateful for what I have rather than regretful of what I've lost. Diabetes is well known to be associated with sight loss, you probably know that. You might be scared of that happening to you, you might have experienced sight loss already or you might be avoiding the subject entirely - in which case, congrats on getting this far into this blog post. I'm acutely aware of what sight loss means and what it feels like to live with. Between 2010 and 2012, I was active on Twitter. 'Whaaaaat?! But your account was created in 2017!' - That's true. The account you know me from (@DiabeticDadUK) was born in 2017 but I've actually been on Twitter since the very early days in a professional and personal capacity. In 2010, I had no niche. I would tweet about anything and everything and it was fun until my retinas went pop. I was aware of accessibility on my iPhone and after having it activated for me (I couldn't see the screen) it became my lifeline and an escape from my loneliness. Visual impairment robbed me of: - The ability to drive. - The ability to work. - A social life. - My favourite hobby (playing poker) - My confidence and self-esteem - I could continue this list forever but you get the idea. The accessibility feature on my phone allowed me to stay connected. I could hear messages, the news, sports reports, who couldn't believe what on Facebook, if huns were OK and tweets! The tweets were my favourite thing because I could talk to lots of people and share stories and still laugh despite my condition. The most frustrating thing was when somebody would tweet a photo. I yearned to see what they were happy, angry, sad or excited about. I couldn't, nobody was describing their photos and I was left to concentrate on tweets which were text only. Here we are, in 2022, over 10 years later. I can see well enough to not need accessibility switched on. Again, I'm incredibly grateful. However, there are a lot of people in the diabetes communities which have a greater degree of visual impairment and they do need accessibility. These days, there is an ALT text option on tweets which contain an image or GIF. Amazing! Last week, I launched the Accessibility Pledge on GBDoc through the @GBDocInfo account. As a community volunteer, I wanted this to come through the community and not through my own personal account. Other volunteers were happy with the pledge and we've all been trying to follow it since Sept 1st. It's been wonderful to see so many individuals adopt the pledge and adjust how they use twitter when it comes to using ALT text. You're a great bunch and I salute you all for doing that with such good spirit and kindness towards people living with visual impairments. Other community accounts have adopted the same approach as GBDoc, too. I'm very happy to see those accounts setting a great example of accessibility to their followers. Sadly, despite encouragement and tagging other accounts we've yet to see a response of any note from the big charities and diabetes organisations which are not using ALT text. I have written to the CEO of Diabetes UK, Chris Askew, a person who has always been engaging and friendly with me - indeed, Chris was kind enough to host a GBDoc Tweetchat for us a few years ago - and he has promised to flag this up to the right people in his team. I think/hope we'll see changes to the DUK tweeted images very soon. Update: Diabetes UK now use ALT text regularly on their tweeted images. Thank you, Chris and team. JDRF UK would be the next port of call for diabetes charities. As wonderfully active as the JDRF staff are on Twitter, very few seem eager to use ALT text. The JDRF UK account managed to use it once, in the last week. Quite why once and then not again is baffling and infuriating to people with visual impairments. On Saturday (yesterday), JDRF UK were very active in promoting a virtual event which I would've been delighted to amplify to my followers and across GBDoc accounts. But, sadly and inexplicably, no ALT text had been used so, I couldn't promote it. I can't amplify tweets which exclude people and tweets which contain no image descriptions are excluding a great number of individuals. I think I've offered enough "heads up" tweets to JDRF UK and again here in this post. I won't be trying to send an email or a private message to the CEO or other staff members for fear of harassment! I'm also aware of wasting my time and energy in some places and I'd rather focus that on organisations who listen to community members and acknowledge their communications. I hope JDRF UK will follow the lead of others in this regard and do the right thing very soon. Update: JDRF UK now use ALT text regularly on their tweeted images. Thank you. I have a lot of connections and good relationships to lovely people who work in the world of diabetes. I will be approaching them all in due course, should they be omitting ALT text from their tweeted images. Guys, seriously, this is NOT work for you. Some of you are speedy-ass typists and excellent writers of copy. To describe your images in a sentence or two will not break you. I promise this is not some kind of a scam, I do not want your sort codes. Start doing this today, please! Even if you tweet one image every month, use ALT text on that image. It won't detract from your enjoyment of Twitter - you might even gain new followers and friendships because of it! It's a win/win situation. The Steptember Challenge? My poor, achy, feet. Find out more about this here Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine! |
Sunday, September 4, 2022
Nothing To See Here
Monday, August 15, 2022
1 Year on a Pump
Happy Birthday, Pumpy McPumpFace! almost. It's been around a year since I started using an insulin pump and phew, what a journey! You might have noticed from my frequent social rants; I like data from big numbers. A year of pumping, around 120 set changes, approx 26,000 units of insulin and, very importantly, 0 insulin injections from pens or syringes - seems like a satisfying amount of numbers to form a good opinion on insulin pump therapy (we'll get to the TIR later, don't worry).
Urgh! It's a nightmare, don't waste your time!
Just kidding. It has transformed my T1D and I'm absolutely delighted and massively grateful for the chance to pump. You knew that already, of course because you follow my socials because you have great taste in tweets. In this blog I am going to run through some of the stand-out experiences of using a pump in the last year. These are my experiences and you'll likely have your own should you decide that pumping is for you.
I remember owning this pump for a week before getting set up. That stemmed from a feeling of anxiety and nervousness that I might make a mistake and give myself a massive overdose or, as is my want with most tech, break it. None of those things happened and it only took a sweaty hour or so to get started thanks to a Zoom call with a former Accu-chek Combo user. In hindsight, I could've done the set up myself from watching YouTube videos but there was something reassuring to have that peer support on hand over a live video call.
Great, so, you're not interested in a day by day run down of pump use from here on in and, to be honest, I couldn't tell you what I had for breakfast let alone what my bolus for it was (obviously it was coffee). Let's get to the important bits, the positives and negatives, and I'll try to keep them brief.
Negatives:
Yes, there are some!
- Always attached.
Unless you're taking a bath or a shower then you're always attached to that little lump of plastic and 60cm of tubing filled with insulin. Eventually, it becomes a very normal thing and you learn to adapt even in the bedroom! However, it does mean you're aware of things like door handles, getting hung up on similar things and where to put the pump on your person. If you use a CGM then you're likely well versed in site rotation for your little "always on me" buddy. The same is true of a pump site but, a pump site needs to be changed every 3 days or so. Your CGM may last for 14 days. If you're moving to a pump then start considering the idea of different areas on your body for placement. Legs are fine for me, some use arms, boobs, love handles and top of the bum. I think I'm good with legs and tummy for the time being.
You may also need to get used to the constant reminder of having T1D. MDI means a jab and carry on & you might not jab again for several hours! Your pump is on your person and always dripping basal into you quietly. I firmly believe that having an acceptance of this condition is a vital part of living well with it and using a pump to help manage it. If you're struggling with acceptance then the reminder from a pump might affect your mental health.
- The blood!
It's not a common event for me, it's happened twice, the blood following a cannula removal if you nick a blood vessel. Wow! If it happens to you once then you'll have plenty of "just in case" tissues on stand by for the next occasion. A little blood can look like a lot, I know. If you scroll through my old tweets then you might find images of my blood-soaked tissues. They're not from a knife wound, I promise.
- Zero IOB
Remember when you were diagnosed and how utterly crap you felt? That huge thirst and a bladder with enough liquids in to end the national drought? Yeah, that's how things go when you've got zero insulin on board. A kinky cannula, an occlusion, a bad site or just forgetting that you've suspended your insulin delivery for a couple of hours will result in a rocket ship on your CGM graph. It happens! All of those reasons have happened to me and it's scary how quickly things can run away from you once the Banting Juice tap is turned off. CGM alarms will stop the worst of it, use them.
- The Fight
Specifically if you live in the UK, access to an insulin pump is not straightforward. I have documented the fight that I was faced with in this blog, just look for The Path To Pumping posts and settle down for a read. Things will undoubtedly change as technology becomes the standard and Looping is rolled out to all with T1D who wish to use it. Until then, it's still unacceptably bad. Criteria is used, of course, with many citing it as punishing them for working hard to manage their T1D. I agree with those people but I also agree that something has to be in place to protect the public purse and evidence to show pumping being worth the cost is a necessary evil. There are no easy solutions but perhaps with enough evidence and the passing of time we will see a much more relaxed attitude towards access.
Positives:
- TIR
Time In Range, now seen as such an important barometer of T1D health. For a while, I've known the good standard for TIR to aim for as 70% - that might be different for you. Although there were periods on MDI when my TIR was near to 70%, in my latter MDI days it was closer to 60%. The period of May 2021 to August 2021 shows my time in the happy zone at 63%. Since switching to pumping, I have seen a consistent TIR of 77 - 82% (currently 78%). That's a big jump and I do know that it might not mean a huge decrease in my chance of T1D related complications but it does mean some decrease.
- Burden
A vast reduction in burden has made me a happier person, a better rested person and a person able to function at a reasonable level. No longer do I look at another injection with lethargy and hate hanging over me. This positive is the most important one for me, peace and happiness have no price tag and achieving them is not an easy thing.
- Confidence
Do not read confidence into my words because I have a social media presence. I have struggled with social anxiety for most of my life and I probably always will. The removal of some of that anxiety through no longer needing to inject in public (or finger prick for that matter) is huge for me. It brings a sense of normality to me, something which I've rarely felt.
- Sleep
I have never slept so much! Not since I was a teenager who pretended he didn't have T1D. The difference is utterly amazing - to wake up in range, to have less nocturnal hypos, to not feel like the walking dead. Sleep is vital to human health and sleep loss is a massively overlooked complication of having T1D. Finally, I feel able to get enough rest.
Those are the biggies! for me, at least. There are lots of other little positives and negatives but I promised to keep it brief. I would love to know of your positives and negatives, if you've recently started pumping. Maybe you've stopped pumping and gone back to MDI? Tell me about it, you know where to find me.
Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!
Tuesday, August 2, 2022
Too Much Or Not Enough
I'm a very vocal advocate of individuality in diabetes. I've certainly used the "YDMV" (Your Diabetes May Vary) acronym many times during discussion and when expressing a view. Type 1 Diabetes is often viewed as simply injecting or pumping insulin to manage consumed carbohydrates and I'm fine with that. I think if you don't have T1D, live with a diabetic or work in the world of diabetes then why would you know much more? It's not wrong, of course, but it doesn't really cover more than the very basics.
Inside of our world (assuming you live with T1D, live with a diabetic, work in diabetes, etc) you probably realise that it's so much more than carbs and Banting Juice. All the decisions that we make are well documented and there are likely lots more that differ from person to person. You might have your own unique decisions to make in regards to your diabetes because you're an individual, living your own life and managing your own diabetes. Diabetes mirrors life in various ways and certainly, for me, the differences between person to person is one of those ways.
I think I've stated the obvious and I'll get to my point and what the title of this blog means!
I've recently mentored a few of my peers in regards to their T1D, you may have read about some of that on the Twitter. The vast differences between those people and the hundreds of other peers who I've engaged with is apparent but one thing which crops up frequently is some of the advice given by HCPs - advice which I'm struggling to understand and it looks a little something like this:
"You're scanning your Libre too much"
"You're not finger pricking enough"
"You don't need to check your CGM that often"
Those three pieces of advice might be right, of course. My own experience is based upon the "too much scanning" advice. It was likely well meaning! I had complained about injection burnout which may have been confused with general burnout. A high number of sensor scans may have raised a red flag and well meaning advice followed. It was the wrong advice because, for me, I wasn't scanning too much. Why? I live my life in my way as an individual. Scanning a sensor, when your phone is often in your hand due to work and other commitments, was not tasking me or burning me out. Perhaps if I was working 10 hours a day as a taxi driver or heart surgeon then the same number of scans would be difficult or even impossible and noteworthy as a cause of burnout.
"You're scanning too much" doesn't take into account me as a person with my own life. It compares me to others and even the HCP's life experience and what they believe to be the right amount. I stated why I scan as often as I do and why it's not a problem and we moved on. I don't fear speaking up during a consultation but I do know that others have issues in that setting and they feel anxious about doing anything unless they're nodding in agreement with an HCP.
"You seem to be scanning your Libre a lot. Is that causing you any problems?" might be a better way to address that red flag. But who am I to talk about communication!? *wink*
The same could be said for the other two pieces of advice, above. To notice something a little unusual is right and great care and it should be questioned but never judged or followed with a sweeping statement. "Too much" might be just right, "not enough" might be just right. Great care considers individuality and works with that. Ask questions, talk to your patient, get more information.
The above three pieces of advice might seem innocuous and to some that might be right, to others it might pile pressure on to an already over-spilling plate of decisions and burden and stress. That's why I'm very vocal about HCPs treating us as individuals in every respect and why it makes great sense to treat each other in the same way.
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.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.
Sunday, June 26, 2022
Time
Have you ever entered your diabetes diagnosis date into that online form, which gives you your estimated number of finger pricks, injections, etc? You get a nice little info-graphic to share with your peers to highlight just how many times you've pierced your own skin in the name of staying healthy. I seem to remember there are hours of sleep lost and estimated hypos, too. It's interesting, I guess, to see how quickly big numbers can build up and when you've racked up a good number of years with diabetes, those numbers become enormous.
Perhaps those numbers will be less of an issue, as more and more people seem to be moving towards technology to manage their T1D (and T2D in some cases). Changing a pump set around 104 times a year seems less impactful, and a CGM 26 times? Definitely less of a smack in the chops compared to 3500 finger pricks. The burden of diabetes is spoken about a lot and I still think that showing your burden in a simple info-graphic can help others to understand you and your condition better.
The burden of diabetes is a multi-faceted affair for me but the weight which hangs heaviest on my shoulders is time. That hasn't always been the case, though. Diabetes played a very minimal part in my life during my teens and early 20s. That is until it didn't and I woke up in a hospital bed or the back of an ambulance - it played a pretty big part, then. I've told the stories from those days on many other occasions, I won't bore you with them in this blog. Time, though! It's a precious thing. We're all born with a finite amount of it after all. It makes sense to make the absolute most of our time while we're still stinking up the place but diabetes just loves to steal those hours, days, maybe years from us. How can we minimise that lost time and maximise our life enjoyment?
I had to pause after that last sentence. I fear becoming some kind of life coach w*nker.
Let's look at the easy option; Ignore it. I don't mean completely ignore everything in regards to your T1D because you'll be struggling and gravely ill within a few days. However, doing the minimum by taking your injections, treating the inevitable hypos and hoping the hypers will go away by themselves. A terrible idea, I know, and exactly how I lived with the condition for far too long. I got off lightly, I could've easily died, you don't want to try this option. You may get away with it for a while until you don't.
A harder option; Carry on with your current management but adjust other aspects of life. You MIGHT find that works for you if other areas of your life are burdensome. So, work? relationships? toxic friends? bad habits? Cleaning up your life might be a good idea in general but it doesn't address the time burden of your diabetes and, it might be argued, freeing up more time from other aspects of life could allow diabetes to take up even more of your precious life - it's very needy like that! Pursue happy living as much as possible of course but this option feels like you'll be ignoring the diabetes time burden and will it eventually bite you on the bum? With a heavy period of burnout to follow?
A sensible option; Address it and find solutions. Start at the top! What's taking up the absolute most time in your life in regards to diabetes? Waiting rooms, probably! I jest. For me it was the finger pricking. I could see the benefits of frequent checks and I still check, today but far less often. The solution was technology. At that stage it was Flash and because I spend a lot of my waking life with a phone in my hand it was never an issue to scan a sensor - it still isn't! compared to foil wrappers, strips, lancets, prickers, meters and losing each of them at various points. Next, injections - I was injecting up to 8 times per day, pre-pump. It's time consuming stuff and, if you know me and my various limitations, eventually very burdensome. The gift of Pumpy McPumpface arrived and that burden was lifted alongside a stack of other QoL improvements. I'm sure you'll have your own diabetes time burdens - feel free to tell me about them in the comments below or on social media.
The change from finger pricking and MDI to CGM and pump has had a profound impact on my life for the better. It also highlighted two things to me:
- Technology is a force for good and for living a better life with diabetes.
- Having more time means less burden (of course) which means less stress, which leads to great improvements in mood, sleep and general health.
Tech won't solve all our time burdens. Hypos and hypers will happen, complications might happen, life events will always happen and they're famous for impacting negatively on diabetes! Sometimes there is little or nothing we can do but our best to get by. Others, however, can help to reduce our time burdens.
HCPs, primarily the decision makers, As your Clinical Lead has said many times! Don't block access. In the UK every T1D has the right to Flash or a CGM under the NHS. I'm astounded at stories of people being refused access to that technology even today. If your patient wants it then provide it. And pumps? You may have read about my fight for NHS pump funding (seriously time consuming!) Step away from the criteria, talk to the patient and find out why they need a pump. I promise that they didn't decide on a whim and that it takes a lot of courage to start that conversation. Even if their A1c is great, don't dismiss the idea because that's not great care. Great care considers personal circumstances alongside health conditions and A1c & TIR. Are you going to improve their long term outcome in life and not just their A1c?
We all know that Looping will be the main treatment for T1D in the coming years and delaying access to the tech which facilitates Looping helps nobody but might hurt the patient.
Friends and Family, You'll never fully understand T1D because, unless you have it, that's impossible. So, a great way to reduce our time burden is to not question our decision making, don't ask why we're hypo, try to avoid making us feel guilty if we woke you or asked you to help us. Talk to us when you have questions, of course but avoid 20 quick-fire Qs when we're trying to stop a severe low. Try to understand that a treated hypo doesn't mean we'll be our usual selves straight away. Our mood might change with our blood glucose level, it's probably not about you. Our medical appointments, although frequent and tedious, can be very stressful for us, try to avoid highlighting them as an issue and an inconvenience to you. Doing those things can help us to feel supported and less likely to explain, or even apologise for, each diabetes related incident.
Peers, This one is super easy - Don't judge. That includes diets, exercise, lifestyles... everything! Don't offer negative remarks to another because they do things in their own way. It's never helpful! At the very least you'll look like a judgemental, mean spirited, bully. Live your own life, share your experiences, if somebody asks for advice or opinions well then is your chance to vent your splaining spleen. Shooting down an innocent peer can result in them questioning their management, make unnecessary changes and hiding away when they have a question and need support - all adding to their time burden of living with diabetes. Be the voice of encouragement and empathy.
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.
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