Sunday, October 16, 2022

Was It The Cinnamon?!

A blue eye with a dilated pupil

 I've recently fallen into a YouTube "rabbit hole". Having watched someone survive on £1 for an entire day, the same chap then went on to describe his favourite "cheap" meals. One of those meals was a fried banana sandwich - made from bread which he baked himself. It looked pretty good and, because I'm not surviving on £1 per day, I added some sugar and cinnamon to my own fried banana sandwich. It was really good! The cinnamon really brought it to life and I've made the same sandwich several times, since.

Cinnamon! Ah, yes the frequently touted and often mocked cure for diabetes! Of course, it won't cure your diabetes and that's why it's often mocked but it does taste pretty good on various things. Strange, though, that after recently eating a lot more cinnamon (I really like a fried banana sandwich) I've finally been able to stop taking medication which I've been on for around 10 years.

I've had to take eye drops since developing retinopathy and various other eye nasties in 2010. The drops have changed, based on my changing condition, a couple of times. The latest batch began in 2014 and they were prescribed to control pressure and irritation. Very successful they were, too! After my 2014 surgery, I have been stable in the peepers. I thought that was down to a combination of better T1D management and my 2 x 2 eye drops per day. I might be right in regards to the T1D management but it seems that things have changed in the eyes dept.

Earlier this year, my eye surgeon suggested that I should stop taking the drops to "see if anything changes". I did that for around a week in the summer only to find my appointment had been rescheduled. Frustrating! But, during that week, I never noticed any real discomfort in my eye. Encouraged, I tried again before the latest appointment in the world's hottest clinic. 

If you've ever had ocular hypertension then you'll probably know the pain. Just like blood glucose levels, eyes have pressure levels that are given values. A normal value is in the teens, give or take a point or two. In 2014, my eye pressure was 44. I was immediately put on a drip to drop the pressure. I've suffered many pains in my life but eye pressure pain is by far the worst thing that I've ever felt. It lasted for 24 hours before I was able to get the drip into my hand and find relief. 24 hours of agony feels like a very long time, i wouldn't wish that pain on anybody. So, to be asked to stop the eye drops which help to control pressure was certainly a worry.

It's been over two weeks since I stopped the drops, 10 days since leaving the sauna ward, and all is stable in that eye. I don't know if I'll ever need to go back to the drops or if that's the end but I'm delighted. To just wake each day and do the T1D thing without reaching for two bottles and a tissue as well, to go to bed without fumbling around, late at night, for the same... it's less work! and it's less burden. This felt like life in 2009! only with better T1D management and no midlife crisis. 

Was it the cinnamon, though?!  

No. Let's not be silly. I've likely needed to stop the drops for a while. I have stability in both eyes and despite my visual impairment I consider myself to be very lucky and happy with my lot. Blessings counted.

To end this little blog post, I'd like to encourage you to always attend your eye screening appointments and any follow up appointments and to go for any treatments that you might need. I don't want any of you to go through the pain and darkness (physically and mentally) that I went through. If you do attend your appointments then you can reduce the chances of anything nasty happening to your eyes. Some of you will already be living with visual impairments and going through your own personal battles. Please don't ever give up on medical science, new treatments and new technologies. Ask about them, ask FOR them! and share your story without fear. There is no shame in having diabetes related eye complications.

Try the fried banana sandwich, too! :

- 2 slices of white bread, remove crusts

- 1 small sliced banana

- Some sugar (brown works best) and some ground cinnamon

Heat a tablespoon of butter in a pan, place the bread in the pan, add the banana to one slice while the bread browns and sprinkle your cinnamon and sugar on the banana. Flip the banana-less slice of bread on the top and flatten with a spatula. Turn a few times to brown evenly and sprinkle a little more sugar on each side.

You'll need insulin.  

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!

Wednesday, October 5, 2022

From The Cradle To The Grave



Have you been reading the shared experiences, maybe offering your own, for Hypo Awareness Week? I have offered up a few things and joined in with a few discussions. It's been heart warming to find solidarity with my peers and learn of the experiences of others. Awareness days, weeks, months or whatever are good things, in my opinion. A little understanding can go a long way for better care in a clinical environment but also at home, work and in a social arena. Keep on sharing and raising awareness of what matters to you.

So, this blog post isn't really about Hypo Awareness Week. The title and photo might have given that away already. It was inspired by the hypo conversations, though. Hypos, a seemingly unavoidable complication of having T1D, rarely spoken of as a "complication", it's frequency - more so for some than others, and the knowledge that your last hypo probably won't be your last ever hypo unless it puts you in the ground. Hypos are probably for life, once you've been diagnosed with T1D, unless technology advances further or £50 million donations find us a cure.

Lots of things are for life, of course; Taxes, corrupt politicians and ITV reality shows to name a few. You'll have your own "for life" baggage, I expect. I certainly do and despite my positive stance over awareness campaigns, I have found this particular one has left me rather melancholy over my own "lifers". 'From the cradle to the grave' refers to my own long term conditions. I almost called this blog "Not a moment" because since my first breath, I have lived with a long term condition. 

Some conditions affect our lives more deeply than others, that could be because of the condition itself or the way we lead our lives or how we're managing the terrible hand that the universe dealt us. My LTCs vary from things that I have no need for support or care over to things such as T1D, where I benefit hugely from good support and care.

My melancholy, my self-pity if you will, will come and go for the rest of my days. It is an infrequent visitor and not something to be concerned about. I feel the storm clouds gathering when I've had a rough period of health or a difficult period in my personal life. In this case, I've had a troublesome couple of weeks with hypos and reduced rest and that's why I've been all very "woe is me" for a day or two. In this time I've been revisiting my "lifers", when they happened, are they related and even considering what might happen in the years to come. Following my last hypo, frustrated, I silently went through my LTC health history:

- Day 1, congenital birth condition
- Year 2, speech condition
- Year 8, diabetes

Then, some breathing space for 25 years. The universe must've been on holiday. Let's crack on...

- Year 33, eye conditions
- Year 37, new eye conditions
- Year 44, shoulder condition

A lot of conditions, hey? and far too much detail to offer in one blog post. Some are related to each other but, because I focus on T1D and anything related to it, I rarely bother to mention anything that's not in the diabetes camp. Oh, sure, they impact on me in many different ways but they don't require any intensive management like T1D does. Oddly, despite the hypos putting me under this dark cloud, T1D is something I feel more "ready for the fight" over. It might be because things could escalate and become very bad with diabetes and the complications that it could bring or it might be the prospect of one day having very little to manage (maybe nothing) in later life when it comes to diabetes. It would be sweet to still be around to experience that.

Reading back through this post, it looks pretty bleak. Sorry, I'm usually a very positive and glass half full person. Life can be incredibly good sometimes! I don't need to think for too long to remember and to count my many blessings. Life is also very short and I firmly believe in enjoying myself as much as I can until I head off into the sunset, leaving behind a trail of horrified nurses. I encourage you to do the same (maybe not the nurses) when you can because, diabetes or not, it turns out you only get to do it once.

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, October 2, 2022

Puppy Low

Billy, the ginger and white cocker spaniel puppy is lying on a grey cushion and looking guiltily to the side



 ...oh, I guess they'll never know! Donny Osmond, I think. Apologies if you read the last blog or even heard about it on the grapevine. I decided it would be better to not publish that particular post in the interests of the personal safety and causing any distress to the victims of that particular group of people. Instead, a complete change of tone with a photo of Billy. Cute, hey?

True, he is cute and a burning ball of nuclear grade energy. As we know, using our own energy burns up that glucose pretty efficiently in most of us and so "Puppy Low" rather than "Puppy Love" seemed like a good title for this post. Sorry, Donny.

Billy arrived during the final week of my Steptember Challenge. I was already exercising a lot more than usual and chalking up a good number of hypos during the first few weeks of the month, at least. This new, very cute, energy sapper really threw a spanner into the works. Very short but high intensity bursts of exercise were sending my BG tumbling. Alongside a different waking and sleeping pattern, it's made for a difficult week with Type 1 Diabetes. I'm adjusting... kind of.

The experience made me wonder about how others cope with different variables thrown into the mix on a frequent basis. Shift workers certainly sprung to mind but I'm sure there are others with equally or more challenging lives. The solution to many of the challenges and life changes which we experience is, of course, technology. I know, a tweak of the Banting Juice might keep things in order, a couple more finger pricks per day might do the trick too. However, for those wild times, the big life changes, the why does my puppy keep on pooping moments, it seems like tech is the answer.

Some of you may have read about a lady who had waited a year for a pump clinic appointment, only to be refused funding at that appointment because of her sleeping issues. Yeah, I didn't know whether to laugh or cry either. Other stories were shared, including a particularly bizarre refusal tale which the lovely Lesley Jordan (from JDRF UK) shared. Take a look, you'll see that on my time line among all the puppy photos. Technology within diabetes should always be burden reducing for us alongside improving or maintaining our long term outlooks. My switch to a pump has vastly improved my T1D burden and, so far, the numbers all suggest that my long term outlook is in a good place. Where would I be without the pump? Struggling, for sure. I certainly wouldn't be trying to walk 250,000 steps while puppying. It could be easier, too! I could be looping and many more highs and lows would be reduced. I'll be a looper, soon enough, I'm in no real hurry.

So, while my hypos have been on the increase, I'm still in a very good place and a place which I can adjust to with the new arrival in the household. Others aren't so fortunate when it comes to accessing the technology which they need. Here is a link to a Twitter poll about hypos. The results are interesting! However, I know of at least two people who are in the replies with huge hypo numbers. Both are fighting for access to a pump and I have one question; Why?

Why are people with (sorry, my friends, no reflection on you) large numbers of hypos having to fight for access to a pump that will almost certainly reduce those dangerous and debilitating events? Are those numbers not raising large red flags and causing fast-tracks to Pumpville? I'm really at a loss. One hypo is a hypo too many and could lead to horrible things happening, including pre-mature death. To minimise those events should surely be a high priority and if many avenues have been explored without success then it's really time to sign off the pump paperwork.

We've seen these types of tech refusals before, of course, in the last 5 or 6 years since Libre hit the radar. It stinks of purse strings and worry about spending rather than offering the best possible care to diabetics - care which will ultimately reduce NHS spending on diabetes related complications. But what about NICE guidelines? What about them?! I don't know about you guys but, NICE don't live my life or manage my diabetes. I know what I need for my best care and to live my best life. Push for the technology which you KNOW will improve your life now and in the future. 

Billy agrees.

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

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!



 

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.