It's Complicated

 

A lot of subjects revolve around Type 1 Diabetes. Many of those are routinely spoken about at your clinic appointments, with your peers, on social media, etc. That's a great thing! Reading about some diabetes related subjects might help you with your own management or, if you decide to verbalise your own experiences, you could be helping others. It's a win-win situation as far as I am concerned. 

I know some will have issues in reading or hearing about the scary aspects of diabetes. I spent a good part of my life avoiding those subjects at all costs. Even when one of the most scary, diabetes related complications, came to visit me personally I decided the best course of action was to put my head in the sand. That was a poor choice, of course.

Living with type 1 diabetes can be challenging, and there are several potential complications that can arise as a result of the condition. I believe that it's important to talk about these complications openly and honestly, without blaming or shaming people with diabetes. Stigmatising language and attitudes can be harmful and can make it more difficult for people with diabetes to manage their condition.

Let's take a look at some of the most common complications associated with type 1 diabetes:

- Diabetic ketoacidosis (DKA): DKA occurs when the body starts breaking down fat for energy instead of glucose, leading to a buildup of acids called ketones in the blood. This can be a life-threatening condition if left untreated.

- Hypoglycemia: Hypoglycemia, or low blood sugar, can occur when a person with diabetes takes too much insulin or skips a meal. Symptoms can include shakiness, dizziness, confusion, and even seizures. We talk about hypos within the diabetes community quite often yet, still, some find the subject embarrassing.

- Neuropathy: Over time, high blood sugar levels can damage the nerves in the body, leading to numbness, tingling, and pain in the hands and feet.

- Retinopathy: High blood sugar levels can also damage the blood vessels in the retina, leading to vision problems and even blindness. I know this particular one very well. 

- Nephropathy: Diabetes can also damage the kidneys, leading to a condition called nephropathy. This can progress to kidney failure, which may require dialysis or a kidney transplant.

It's important to note that not everyone with type 1 diabetes will experience these complications, and managing blood sugar levels can help reduce the risk. However, even with the best management, complications can still occur. That's why it's essential to have open and honest conversations about these potential complications and provide support to those who are managing the condition.

Unfortunately, people with type 1 diabetes often face stigma and blame for their condition, which can make it even more challenging to manage. Some people may assume that diabetes is caused by poor lifestyle choices, such as eating too much sugar or not exercising enough. However, this is not the case with type 1 diabetes, which is an autoimmune condition that cannot be prevented or cured.

Stigmatising language and attitudes can make people with type 1 diabetes feel ashamed or embarrassed about their condition, which can prevent them from seeking the help they need. It's important to talk about type 1 diabetes in a way that is respectful and understanding, and to avoid placing blame or shame on people who are managing the condition. 

There is often much talk between diabetics about the language used about our condition. Even the use of the word "diabetic" causes some to feel uncomfortable, much as the clumsy "PWD" does. I've repeated this many times previously; We're all very different. The use of some words and phrases doesn't cause me any upset and I believe that to be commonplace among other diabetics. 

What does cause me upset is the stigma surrounding complications. And not just because I've lived through several different eye problems. Indeed, I haven't felt stigmatised in any way for my diabetes related complications, but I know that others have and I know that many others fear talking about their own complications due to the reactions of others. That needs to stop. 

Through my own engagement with the online diabetes communities, I've learned much about my T1D. I've improved my diabetes management and probably given myself a much better long term outcome. If we open the door to discussing complications, normalise the subject, provide support through communities and peers as well as directly in clinic, then I firmly believe we can lessen the severity of complications in many. Why? because fewer will think twice before asking a question online, fewer will be worried about approaching their doctor for advice, the early stages of complications can be picked up on and stopped or slowed down before they become severe.

So, if you've got complications concerns, a question, experiences to share, etc then hit your socials. There are many who will support you and benefit from your engagement. If you experience negativity, use your mute or block buttons. 

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Puppy Low

 ...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!

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Diabetes & The Vaccine Booster Hypo

Tis the season... for colds, flus and Covid. I imagine that many of you have experienced some kind of seasonal illness by now. Certainly, my own household has been through the usual coughs & colds and I imagine there will be more to come in the months that follow. We all know that colds are just going to happen. Flu, too will hit many and Covid shows no signs of going anywhere anytime soon.

Omicron, the latest Covid variant, seems particularly worrisome. I wasn't aware that things had developed beyond Delta. Time flies with Greek alphabet virus mutations, I guess. I don't know if the latest variant is more worrisome because the media have built it up to be so, if governments & scientists are using it to increase the uptake of boosters, if it's social media driven, if it's truly something to be very concerned about or if nobody knows, not yet at least.

I'm sure we'll know more in the coming weeks. Until then, booster jabs appear to be in high demand. Pre-Omi, it was very easy to book a booster jab appointment. I made one for the following day and only three others were in the queue in my local pharmacy. Yesterday, with news of Omicron plastered across all media, a booking was much harder to come by. An online booking system placed one of my household members at 450th in the queue. Last week, there was no online queue. Fear is a driver of many things... perhaps not T1D management. 

So, I've had the jab and 6 days have passed. I feel reassured by the data which indicates a strong protection against Covid illness for the vaccinated. Although, I'm disappointed by my lack of 5G despite upgrading my phone. I had the Pfizer flavour and it felt the same as my first two jabs; not very painful, no bleeding, just a little tight feeling in the outside of the shoulder. Previously, things had escalated at around 12 hours after the jabs. The shaking, sweating, feeling freezing cold, headaches and generally pretty grotty all arrived on the 12 hour mark. I expected the same and so I settled down for a night of paracetamol, drinks and the adding and removing of clothes. Nothing really happened to that extent. What did happen, was the strongest hypo that I've had for a good 4 or 5 years. 

You're a frequent reader of my waffling, so you already know that I don't get much in the way of hypo symptoms. My BG needs to begin with the number 2 before I'm even moderately aware that something isn't quite right. So, it was with great surprise to feel strange at a little over 4mmol/l - according to my CGM. Alright, I'll eat a few sweets to stop that little drop. 10 minutes later...

BUZZ BUZZ!

The screen was red and the number was 3.8. Now, I'm very grateful for the Diabetes technology that I use. It's saved me from very worrying moments and many lost hours of sleep. In this instance, I think it may have saved me from blue lights and a ride in an ambulance. Before the BUZZ BUZZ, I was feeling very sleepy and I was very close to actually falling asleep - in the back of my mind, I attributed that to the booster jab and I wasn't concerned. I'd just eaten some sweets and felt fine after all! Had I fallen asleep then I fear the outcome could've been very bad.

Let's try a finger prick

3.6 mmol/l

Few things, outside of caffeine, will stir me faster than a hypo. The shovelling of Squashies into my mouth began. I will eat three at once when low. I know that's pretty much 10g of carbs and it's easy to keep track of. I noticed, hand delving in to the packet, that I was shaking. What on earth is this!? A shaky hypo, like it's 1996? a very retro symptom.

BUZZ BUZZ DO DO, BE DO BE DO, DO DOOOO

What a cheerful sound; the sound of my CGM alerting me to a severe low. BG - 3.0 mmol/l.

At this stage, I'm swearing and eating. Sweareating? Eatcursing? Munchfuc*ery? Whatever, the Squashies were going in at pace, washed down with a tube of Glucogel.

I was soaked. Every inch of my body was sweating. I felt a combination of shock and delight. I have hypo symptoms! I can't wait to tell everybody! - Oh, yes, let's concentrate on staying alive first. My lips were numb and, as I stood to get more hypo treats from the kitchen, I noticed that my legs weren't really working. Wow! It's like every hypo symptom that I'd missed in the last 4 or 5 years had decided to visit, all at once.

Finger prick - 2.8 mmol/l

Alright, now I need help. I was alone, at home, with my son who was busy doing some gaming thing. I couldn't really walk and felt the safest option would be to call him. He brought a large glass of juice to me while I ate half a chocolate log, shaking and not able to communicate very well.

Another 15 minutes passed during which I found I was reminding myself that my pump was suspended, no insulin was going in, I had approx' 3000g of carbs on my side, it was going to be alright. 

It was, of course and eventually all that glucose lit the blue touch paper. I felt terrible and had the prospect of the booster jab side effects to come. They arrived, in the middle of the night, alongside a gut-rot which had me begging for the merciful release of death. 

6 days on, I've read some tweets by fellow T1Ds who have experienced a lot of lows since their booster jab. Maybe it's a thing? or it could just be a coincidence. To suddenly have such strong hypo symptoms, following much improved BGs (thanks to pumping) seems utterly strange. I hope they stay for a while and it wasn't just a fleeting visit. Horrible as they are, they are a great natural warning that something is wrong.

Do get your vaccine booster if you've yet to have yours. And maybe keep your hypo treats close by, just in case.

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!

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The Cost of Hypos

Do you remember the "sugar tax" of a few years ago? Our favourite sugary drinks, the life-saving drinks which we used to treat hypos, suddenly became less sweet. Lucozade, Ribena, Vimto and the other teeth rotters became less attractive or pointless if you wanted to treat a low blood sugar. Lucozade clung on to a good chunk of its glucose but it was still much reduced, meaning more would need to be consumed (and bought) to treat a hypo than before the days of the sugar tax.

Today, news reports have highlighted that an independent review of the food that we eat should be subjected to further taxes, specifically sugary and salty food, and vegetables should be prescribed on the NHS.

The story is here if you'd like to read through it.

That story aside, it has made me wonder what the cost of hypos are. I don't mean the physical exhaustion, stress and anxiety. I'm talking cash, moolah, filthy lucre. Just how much does a hypo cost? In an ideal world, nothing. Gluco Gels are available on prescription and assuming you only need 30g of carbs (3 x 10g tubes of glucose) to treat your hypos per month (my allowance) then you're golden, hypos will cost you nothing as a Type 1 Diabetic. Meanwhile, back in the real world, here are my hypo stats for 2021 so far:

At the half way point of the year (183 days, 26 weeks) I'd had a grand total of  74 low blood glucose events.  That's just under 3 per week. Of course, that fluctuates depending on a seemingly infinite number of variables but let's assume an average of 3 per week, rather than the days before CGM alerts when my hypo numbers were almost double that amount.

Hypo treatments and their costs will vary. I don't eat and drink the same thing in the same amounts for each hypo. So, what's the most common treat for me? Squashies and Lucozade! Let's do some pricing up:

4 x 330ml bottles of Lucozade are £2.70 (68p per bottle)

1 x packet of Squashies is £1.00

I conservatively estimate that I will drink half a bottle of Lucozade and eat around a quarter of a packet of Squashies for a hypo. Again, that will vary depending on many things but as an average I think that's a reasonably conservative amount. An average hypo is costing me:

34p in Lucozade

25p in Squashies

59p is no big deal, right?

3 hypos per week, though. Alright, £1.77 per week. 

Oh, £92.04 per year.

I've had T1D for almost 37 years. £3,405.48

Perhaps I'll still be here in another 37 years. £6,810.96

Remember that my hypo frequency was once double what it currently is? Yikes!

Suddenly hypos are starting to look like expensive events, over the course of my life. I could probably buy a weeks' groceries for what I spend treating a hypo over a year. And now a proposed extra sugar tax of 15% - 25%?

I know that my hypo events are a tiny number compared to some. I wonder how much your hypos are costing you? and do you agree with the proposed new sugar and salt tax? Let me know.

 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!

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Hobnobs in Hiding pt.2

 

Did you ever have a bad experience with alcohol? Or perhaps you ate at a particular restaurant and got sick. Did you then spend a while, avoiding that drink or that meal? Maybe you've never eaten or drunk something since the time you were left with no option but to bark into the toilet bowl, soon after. I don't blame you. That's exactly how I feel about Hobnobs but only the original ones. Cover them in chocolate (as seen above) and I'm more than happy to ruin my blood glucose for them. There is nothing wrong with the biscuits, per se, it all stems back to my childhood memories of them.

Hopefully you've read part one of this blog already. If not, just click/tap that link and catch up.

After feeding David hundreds of biscuits and probably tens of thousands of extra calories, hiding Hobnobs in school desks, school bins and my heavily policed home bin, you might think that enough was enough when it was time to start Secondary School. Wrong! A new term, a new school, new classmates, new biscuit hiding challenges! We go again! Raaaaaar!

Initially, I tried my old route of palming off my silver foiled packets of snacks to David. Things had changed. David was less keen to be given food. Perhaps he thought I considered him some kind of charity case, starving for my daily crumby offerings. In addition, the "big school" was exactly that and David wasn't always in my class and had made new friends. Dammit! It was time for a new plan.

The school bins were an option for me on some days. On others, I was a long way from any form of bin and had to take my Hobnobs home but not to deposit in the home bin. I'd already learned my lesson about dumping things there! In my wisdom I decided to hide these little packets under my bed. How very child-like! but, then I was only 11. If you're wondering how many Hobnobs will fit under a child's single bed then the answer is several hundred.

That worked well for a while until the day came for my mum to vacuum my room. Let's call this "H-Day".

I'd like to describe an almighty telling off, here. Something to big-up the drama of that moment. All bloggers use some artistic licence, right? That didn't happen. I was asked "Why?" and my response, blurted out without any real thought: "I don't like them any more".

I mean, it wasn't a lie! but it wasn't the whole truth, either. I didn't want to be the focus of attention, I didn't want to be different, I didn't want to be more different, I was already different. Even at 11, I thought that conversation wasn't something I and my parents were ready for. I didn't want to worry or upset them as much as I didn't want to confess my "weakness".

Finally, things changed. That was the last time I would handle Hobnobs, unwillingly ever again. I was sent to school with a juice box instead. That was perfect. The other kids would drink juice, cola, anything with lots of sugar during the morning, between the first and second lesson. I was fitting in!

The impacts of this time only became apparent as I got older. I lost countless hours in class and in education because of feeling hypo. For around 4 years (before things stopped) I was having a pretty bad hypo, two or three days per week in the hour before lunch at school. At one stage, I collapsed in school, during a PE lesson of Badminton. I had a huge seizure, bit my tongue and had to spend a week at home to recover. Even that incident didn't make me eat my snacks! By now, my friends were old enough and "safe" enough to know that I have diabetes. I still refused to tell them. The badminton incident was chalked down to me falling over and hitting my head, again, not a total lie! I certainly hit my head and fell over.

I decided to blog about this little period in my life because of Eating Disorders Awareness Week. I like to discuss my blog ideas with friends, in advance and we agreed that this might be more accurately described as Disordered Eating or even Disordered Diabetes! Let's go with the former, the latter might light some fires.

The stress, of varying intensities, at that time was frequent. Handling a new chronic illness diagnosis as a child is bad enough. How about a side-order of social anxiety and feeling terrible from hypoglycemia? 

I feel lucky. That period in my life could've easily escalated into something much worse. I did carry some of this behaviour into my teens and early adulthood but to a far less dangerous extent.

As an adult, I wonder how this might have been avoided. My conclusion is psychological support. Each person, regardless of age, should be offered support following news of a life changing diagnosis. If I could've normalised and processed the news of diabetes, I'm certain that this behaviour would not have happened. That may have resulted in an easier childhood and a different path as an adult. 

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!

BUY DIABETIC DAD A COFFEE HERE

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