Acceptance

It's not easy to find an image for most blog posts. What can adequately represent diabetes in a single photo? I mean, apart from a train crash or a person screaming. Insulin seems to cover the subject pretty well. I think most people understand what an insulin pen or a vial of Banting Juice means, these days. 

It gets more difficult (to choose an image) when talking about the nuances of the condition. I think that's especially true when referring to the mental aspects of diabetes. The screaming person might work? Perhaps not for the subject of todays post; Acceptance. 

The seed for this post was planted when I read through a thread on social media. An exasperated person exclaimed "Have I got to do this for the rest of my life". It struck a chord with me, I've been there, I've said the same openly and privately over the last near 40 years. 

The first time the daunting reality of type one diabetes gave me a slap in the face was soon after my diagnosis. I had been home for only a day or two when I questioned how long I'll need to have injections for? The answer, from my mum, was truthful - forever. I've written about that story previously, you may have read it if you're a regular reader of my blog posts. Over the years, and probably following momentous diabetes events, I silently consider the condition again and how it is "forever." 

Those events? Complications are pretty high on the list. Generally, for me at least, T1D is 99% tedious, 1% terror. Complications are terrifying. If you went to your eye screening and came away with some news that was less than good, and you didn't have a little moment, then I question your humanity. Of course, there are many other examples including kidney problems, heart, etc, but you get the gist. Alongside coming to terms with the burden of this condition, diabetics have to somehow find an acceptance of what might never happen, or what is already happening because of it. Complications really do suck. 

I came to an acceptance of my T1D after a very long time. It involved; not hiding it, talking to my peers, ranting on social media, and learning all I could. I even have a Type 1 Diabetic tattoo. I think it's pretty safe to say that I'm alright with this condition being with me forever. "Alright" doesn't mean happy, far from it. I would give all I have to be free of this pissing evil. I know that's unlikely in my lifetime and I don't build up my hopes of a cure. 

So, the thread. I recognised the frustration and fear and anger in those words. I recognise how it is all amplified when a doctor, or a badly worded letter, has news that something might be wrong because of your diabetes. That background music is suddenly the dominant noise. 

I don't know if acceptance of complications or the prospect of complications is an easy thing to achieve. How do you accept what is terrifying? My own eye complications have been stable for a number of years now. The visual impairment that I was left with took several years, and some poor life choices, to come to terms with. Today, I'm a "it is what it is" type but, just like the disease that caused my VI, I would give all I have to be free of it and to have my old sight restored. Acceptance, being alright with it, does not mean happy with it.

Today is "Blue Monday" - the most depressing day of the year by all accounts. It seems appropriate that blue is associated with diabetes, a condition that undoubtedly causes depression in so many.

If you were affected by any of the words in this blog post, by diabetes, complications, or any aspect of your life today, tomorrow or any day then please seek out support. 

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I Was Feeling Complicated...

...I was feeling low. Annie Lennox is bloody brilliant, isn't she? The song is Thorn In My Side by Eurythmics, and you'll probably be unaware of it if you're under 35. Put it on your Spotify while you read this post.

This post is about diabetes related complications. If the subject is too difficult for you, then please come back again for another post in the future. Normally, I wouldn't bother to put a trigger warning like that because I'm a "warts and all" diabetes blogger. However, I understand that the subject can be upsetting for people who live with diabetes and their loved ones because it is so utterly dreadful. So, if you're still here, let's begin.

The story of my own diabetes related complications has been well documented in this blog and across my social media accounts. If you're unaware, and in short, I suffered severe eye complications from around 2010 - 2012. I had several surgeries and I spent a good deal of those two years living in near blindness. Things improved and although I am "registered as blind" I am far from it. The reality is I have a visual impairment that does impact my day to day living... actually day to night living, my night vision is shocking, and I need to wear specs to read and write incredible blog posts such as this one.

As I head rapidly towards 40 years with T1D, I count myself lucky to only have had that experience of complications. Oh, if I could change history and not go through that then I absolutely would! I count myself lucky because I know many others who have been through more, much more, much worse and they keep on fighting with lots more day to day (or night) issues than I have. Also, as I've aged (matured?) with my eye complications and embraced the lived experience of others with T1D, I have come to realise something:

I was wrong.

An admission of being incorrect is a tough one to express. It's rare to read of anybody back-tracking and changing a firmly held view. I don't know why, as human beings, we're so proud about always being right. I mean, just by pure chance, sometimes you'll be wrong... right? Anyway! Why was I wrong? Well, for several years and up until very recently I've harboured a feeling of self-blame for my eye complications. I may have even written about it a few years ago, but then I never touched on the subject again. Pride? Over time, and with more experience, I've come to realise that I've been wrong to shoulder the blame for what I went through.

I'm not going to shift the blame for my complications to another person. Why it happened, is down to one thing; Type 1 Diabetes. After that, the reasons don't really matter. History cannot be changed. Yet, for a long time I put the blame on myself, the missed appointments, literally running out of an appointment for laser surgery, hiding away and pretending it wasn't happening. 

To run away from you

Was all that I could do

Annie was probably referring to an ex-lover. For me, to run away from those scary appointments felt like my only option, the easy option, and I was an adult. Nobody was forcing me to attend. Indeed, nobody would chase up missed appointments or why I'd scarpered part-way through laser surgery. Why would they? DNA (Did Not Attend) is a common thing in the NHS and the reasons for that can be complex rather than simply the patient just doesn't care about themselves. If the patient doesn't care about themselves, surely they are in the greatest need of the soonest care? A discussion or a blog post for another time, perhaps.

I should've known better

But I got what I deserved

Was exactly my thoughts for many years. I was told by enough healthcare professionals. Yet, "told" is something we experience a lot when attending our diabetes reviews.

"You need to get your A1c down"

"You need to have less hypos"

"You need to check your blood glucose more often"

The list is long and, if you have T1D, you've probably got your own extensive list of "tolds". 

Modern care has come to realise that the harsh approach, the scaremongering, doesn't work very well on the whole. I agree. It clearly didn't work for me having been subjected to scaremongering from an early age. Perhaps if all of my diabetes history was analysed, those early years were the seeds planted for my mid-life complications harvest. Who knows? Again, I'm not shifting blame for my complications to another person or persons. Diabetes got me here, my own immune system did the dirty work. What followed was a war and in every war there is suffering - my left retina took the brunt.

Complications are indeed a thorn in my side, today. Hopefully, they won't be for you. If you do get some bad news, I have some words for you:

It's not your fault. Don't put yourself through what I have for a decade.

Complications treatments are as good as they've ever been.

Be brave. You're only here once and you matter.

Things will get better or settle down. 

Seek support. The NHS might offer it to you - take it! 

Talk and share. The huge #GBDoc community has more experience than any clinic. We got you.

This post was tougher to write than I expected. Thanks for giving me a few minutes of your time.

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The Darkest Hour

Mental Health Awareness week is coming to an end and, for the first time really, I've been quite active about raising awareness of mental health issues on social media. During the last week, I have read about the issues faced by others within the diabetes community. I have also had several conversations with fellow diabetics about their mental health and shared my own thoughts in turn.

During a couple of conversations, diabetes related complications became the subject. It seems very reasonable to be fearful or anxious about complications, whether you've experienced them personally already or you've simply heard about them - yet managed to stay complications free. These particular conversations were on a mentor to mentee basis (I help to mentor a handful of people living with T1D) and so it wasn't appropriate for me to use that time to fully open up about my experiences. Some of my mentees pay for my time and it's important to focus on their issues, rather than drift off into my experiences. However, as we touched on some aspects of mental health in relation to diabetes complications the memories came flooding back.

Before we tuck into the main course of this blog post, I'm going to put a trigger warning here. Below, I will be writing about diabetes related complications, depression, and suicide. So, if you're upset by those subjects or they trigger you in a negative way, then please close this window and drop by again later for another blog post. Thank you.

Type 1 Diabetes had never really impacted upon my mental health. I'd had the condition for around a quarter of a century, from childhood until my early 30s, and although it was a massive annoyance and it nearly killed me a couple of times it wasn't affecting my life much. I'd been married, had two children, I was working for a TV channel in London, drove a fancy car, and I was flying around Europe to play poker tournaments. Much more was going on at that time, too! Needless to say, I was enjoying life and I didn't have much time for diabetes. My autobiography will tell you about that time.

Diabetes got angry at my ignoring of it. It'll do that, it's very needy. As my vision began to change, as little black dots appeared, as things became more and more blurry, I knew that I couldn't keep my head in the sand forever. I'd already been diagnosed with retinopathy at that stage. If you've read my previous blog posts on the subject, you'll know the story from then on. 

What I haven't ever spoken about is the affect that this period had on my mental health. Sure, I've joked that it was "a pretty dark time" but that's about it. The truth is that it was a terrible time. Once the initial feelings of anger, self-pity and guilt had subsided, I felt an overwhelming sense of hopelessness and that didn't disappear very quickly at all. It took many operations and around 18 month - 2 years of my life until I found some hope again. 

The title of this blog is The Darkest Hour. When I think of this time, many hours were dark (stop with the puns!) yet there was one particular time when I had firm plans to end my life. I am sorry to my friends and loved ones if reading that upsets you. The time frame is a little hazy, but it was around a year into my life as a very, very, visually impaired person (almost entirely blind). I'd had several operations on one eye with very limited success and no "work" had taken place on the other one at that stage. I considered what the future held for me, what had been, what I'm currently missing. A spiral of depression began and I became comfortable in planning my demise. So much so that I told a trusted person of how long I'd be waiting before calling it a day. That time was approx' a month after my next operation. I figured I'd give some time for things to settle down after the op, talk to my surgeon about what could be done from then on, and if the situation was to stay the same then I'd go through with my plan. 

Losing my sight was devastating, but it was also the fact that it was happening to me in my 30s. I imagined what might happen in my 40s, 50s and beyond. I had no intention of slowly decaying and putting my family under the stress of witnessing that and caring for me. I won't be writing about my plans to die in any detail in this blog post or anywhere else. I'm absolutely not here to put plans into heads.

I'm still here, in my 40s, so you already know that things changed for me. I remember that day as clearly (pun?) as any in my life. After getting the thumbs up from my surgeon, I could look my children in their faces and see their eyes and their smile. Everything changed. Oh sure, I've made monumental balls ups of many things since that day in 2012, but I've become more appreciative of life, more understanding of the desperation felt by others when life becomes intolerable, more respectful of diabetes and more engaged about my own health.

So, here's a thing; I was wrong. Wrong to make plans to end things, but in hindsight I understand why I was in that position. What I needed was support to help me deal with the devastating news and the long period of time as a severely visually impaired person. What I got was a meeting with a blind persons charity, in the eye clinic waiting room, surrounded by many other patients. That was followed up with a home visit to ask what I needed in a practical sense for living at home. I was given a talking blood glucose meter. Cool, thanks. No psychological support was offered.

I feel very lucky. The brilliance of my surgeon saved my sight and, in the process, my life.

I've been wondering how to end this blog post without sounding patronising and without doing the "My DMs are open, message me if you want to talk" virtue signalling nonsense. How about this:

If you're in a bad place with your mental health, diabetes related or otherwise, hold on. Life is long and sometimes things can take what seems like ages to change. You may feel that change is impossible, even if change means you must adjust to new circumstances, but it will happen and you can adjust. Seek the right help to support you. You'll need professional organisations and possibly psychological help. Be honest with your family and trusted friends.

You might also benefit from just talking. There is no shame in feeling depressed, anxious or even suicidal and when it comes to diabetes, we got you. I got you.

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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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Type 1 Diabetes and Sight Loss

 

I am often asked about my sight loss in relation to my T1D. How it came about, how I adjusted, acceptance and advice are often subjects of conversation and I'm very happy to discuss. Complications are a thing for some T1Ds and we shouldn't avoid the subject. Here's a little about my diabetic retinopathy without too many gory details. 

As a person living with type 1 diabetes and sight loss, my journey has been filled with challenges and triumphs. I was diagnosed with type 1 diabetes at the age of 8 and experienced some eye complications due to high blood sugar levels at age 31. Eventually, my eyesight started to deteriorate, and I was diagnosed with diabetic retinopathy.

The diagnosis was devastating for me. Losing my sight meant losing a part of myself, and I had to come to terms with the fact that my life would never be the same. I had to learn new ways of doing things, like cooking, cleaning, and getting around. It was difficult, but with the support of my family and healthcare team, I learned to adapt. I haven't lost all of my eyesight, but enough to be registered as blind. That feels like a very strange thing to type because I'm not blind. If you've met me, you've probably noticed that I can get around pretty well. Indeed, my sight is as good today as it's ever been since my retinopathy diagnosis. I prefer "visually impaired" when describing my sight loss as that's more accurate. Although, some hear visually impaired and automatically assume totally blind - for me that's far from correct. 

One of the biggest challenges I faced was managing my diabetes and my vision loss. I had to learn how to measure my insulin doses, check my blood sugar, and administer my insulin injections without relying on my sight. It was a lot of trial and error, but I eventually found a routine that worked for me.

Living with sight loss and type 1 diabetes has also taught me the importance of self-care. I've had to make my health a priority and take care of my body in ways that I may not have otherwise. I make sure to exercise regularly, eat a varied diet, and keep up with my doctor's appointments to prevent any further complications.

Despite the challenges, my journey has also been filled with triumphs. I've been able to pursue my passions, like diabetes advocacy, writing and public speaking, and inspire others living with sight loss and diabetes. I've learned to appreciate the little things in life, like the sound of birds chirping or the feeling of a warm cup of coffee in my hand.

Living with sight loss and type 1 diabetes is not easy, but it has taught me resilience and strength. It has taught me to never give up and to always find a way to overcome obstacles. I hope that my story can inspire others living with these conditions to keep fighting and to never lose hope. If you get a diabetes related eye complication then it's alright to be fearful, angry, upset and even depressed. Nobody wants that news, but know this; most eye complications can be easily treated and needn't be as severe as mine if you attend your appointments and follow the advice you're given. 

I have written other blogs on this subject with more detail regarding surgeries and treatments. Take a look through my posts and have a read if you're interested in that. 

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Charles Bonnet Syndrome

What is Charles Bonnet Syndrome? and why the photo of Abraham Lincoln? I'm glad that you asked! because that's what today's blog post is about.

I've been talking about eyes and complications on various platforms, lately, following the stopping of my long term eye medications. You might already know the deal with me; eye complications from T1D, surgeries, pressure, yadda yadda. You might have read or heard me talking about scotomas, too. However, I've rarely spoken about my experiences of Charles Bonnet Syndrome.

Who on earth is Charles Bonnet? A pretty interesting fellow, by all accounts. You could do some Googling to find out because I'm more interested in the syndrome than the person. Wikipedia says this about the man and the syndrome:

"In 1760 he described a condition now called Charles Bonnet Syndrome,^[7] in which vivid, complex visual hallucinations (fictive visual percepts) occur in psychologically normal people. (He documented it in his 87-year-old grandfather,^[8] who was nearly blind from cataracts in both eyes but perceived men, women, birds, carriages, buildings, tapestries and scaffolding patterns.) Most people affected are elderly with visual impairments, however the phenomenon does not occur only in the elderly or in those with visual impairments; it can also be caused by damage elsewhere in their optic pathway or brain."

Hallucinations?! Yikes! It sounds pretty scary and, to begin with at least, it was. Let's rewind a decade, I'd recently had my first eye surgery and things hadn't improved. My ever decreasing vision was still very poor and I'd resigned myself to a long period, maybe life, of very limited eyesight. It was a dark period for me both mentally and physically. One morning, I woke to find, to my utter bewilderment, Abraham Lincoln walking by the foot of my bed. He looked directly at me and then sort of melted away into the wall. Strange, I thought, I don't remember taking LSD last night. At the same time, I was paralysed by fear. I remember staying in bed for at least 20 minutes trying to piece together what had just happened. Was I really awake? 

The experience dominated my thoughts through the rest of the day. I had convinced myself that I was somehow half the way between waking and sleeping, that my lost eye sight had tricked my brain into being asleep and desperately trying to not worry about dementia or "going mad".

Some time went by, maybe a week or so, before it happened again. No visits from Lincoln, though. That's far too wacky! This time a far more realistic smile from Queen Victoria before she turned her head and vanished. That sparked a bunch of hallucinations which ranged from various Victorian age dressed people to my best friend sitting on my toilet, cheerfully exclaiming "Hello mate!" and disappearing - Although I couldn't hear him say it, it was simply "mouthed" at me.

By now, as you might imagine, I was getting a little worried for my sanity. Weirdly, I had stopped becoming frightened of the hallucinations and felt disappointed when they vanished. Perhaps seeing something clearly again was the reason for the "feel good" and my brain was releasing some kind of chemical.

Of course, I was unaware that I was experiencing Charles Bonnet Syndrome. It took a visit from a charity worker to explain that what I was going through was completely normal. He even asked the question "Old fashioned things?". I laughed out of relief and started to look forward to my next round of visits from a different century. Sadly, they never returned. It was as if my brain had worked it out and decided I no longer needed to be fed these images. Soon after that, more surgeries and the slow recovery of my sight began. 

Head to the NHS website to read more about this syndrome and the hallucinations in detail. However, they're not dangerous, they are common for anybody of any age following sight loss, they do stop.

As always, I encourage everybody who has diabetes to attend their eye screening appointments. Please go to any follow ups and have any treatments offered to you. 

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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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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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. 

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It's Good To Talk

 

I have a new-found admiration and I'll get to that in a moment. Firstly, some context;  I've hosted podcasts, created several vlogs, spoken on the radio, quite a few people appear to follow me on social media, too. In a different life, I played poker on TV and once upon-a-time I played in the World Series of Poker, the biggest card game in the world. You might say I've been around in various guises when it comes to being in the public eye in the last 15 years. I must be brimming with confidence, right? You might read my tweets and my online persona comes across to you as a confident, sometimes outspoken, funny, charming and rather good looking, humble, young man. Some of those things are true! The real truth is that I'm a quiet person. I suffer from social anxiety. I use the word "suffer" deliberately because, unlike Diabetes - which I have, there have been times when it has been on a different level of troublesome.

There are reasons for my social anxiety which go way back. That is for another blog, perhaps! It'll likely be too long to be interesting. I'm not going to offer advice or suggestions on how to "get over it" either. That's for you to work out, if you're relating, sorry. What I can offer is my own experience.

Life has a way of moulding us, directing us, forcing us into situations. Sometimes it takes trauma, grief in it's many forms, exquisite joy or an event to really open our eyes to important things and exciting opportunities. Perhaps the Covid-19 pandemic, the lockdowns and well documented horror have given you a new perspective. Perhaps you're doing new things already and appreciating the people and things around you more than before. Maybe you promised yourself to be that way but it hasn't worked out. That's alright. Lots of us promise to live a new, healthy life on Jan 1st each year. I'm not sure how many of us live up to those quietly spoken words which we weren't truly believing in anyway.

You might have read about my Diabetes complications, before. Sight loss and the dark (no pun intended) places that it lead me to, followed by recovery and a new-found "Wow!" for the world. Then, I told myself that I would do new things. I did. I built a business and probably over-enjoyed myself in many other ways (again, stories for another time). My 40th birthday had a similar but "purer" affect on my views. I decided to open up about my Type 1 Diabetes, expecting nothing more than some minimal engagement on my very early and terrible vlogs. 4 years later, it was one of the best decisions of my life. It's good to talk!

The new-found admiration? It's for those taking a leap of faith by speaking in public for the first time. I've spoken at business meetings and haven't really felt uneasy. Those meetings are often boring and a matter of fact, information sharing, exercise. Speaking publicly about something personal such as your health is pretty terrifying! but... fun! Terrifunning? Like a rollercoaster! but a rollercoaster which you control. That's because you're the one who truly knows everything about that subject. I did that a few days ago at a grand old hotel in Stratford-upon-Avon. A private engagement with some lovely people who were extraordinarily kind to applaud me and ask many really great questions. Although that subject was about the CGM which I use, rather than me, I still felt comfortable after a few seconds. After I left that rollercoaster, I wanted to get back on. The fear had gone and the excitement of the occasion came through. Also, I felt I'd lived up to my own promise of doing a new thing which I once would never have even considered. It's good to talk!

I realise that I'm lucky to be given opportunities within Diabetes. I am after all a "Joe Bloggs" (blogs?) Diabetic. I won't be running any marathons or climbing any mountains, you won't catch me trout-pouting in a bikini on Instagram, I'm unlikely to star in any Super Bowl ads or have my hilarious jokes recognised by TV bosses. I don't create drama for content, either. I'm no false advocate who has unsavoury motives. I'm just a person who talks about Diabetes with his peers. Perhaps you are too? I imagine we get along famously already. It's good to talk! 

Social anxiety feels real. That demon is frightening but I'm beginning to realise that he's not real. He is an imaginary monster under the bed, who goes away when you're brave and you look under there. That bravery takes a lot, it can take a long time or it can be triggered by an event. If the opportunity presents itself then I strongly encourage you to go for it and look under the bed and never look back. Do the scary things.

If you'd like me to do something scary then get in touch - daddiabetic@gmail.com Bungee jumpers and sky divers need not apply!

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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Your Words, Not Mine

It's been an interesting couple of days in the world of Type 1 Diabetes, from my perspective. Last weekend, I enjoyed the Connect One UK online conference more than I anticipated. Although I was select in the parts of the conference which I viewed, and that may explain why I was left feeling positive towards the event, I felt it was refreshing to hear individuals talking about their diabetes, or their association to it, using words and phrases which are not always heard at diabetes conferences. In particular, it was lovely to hear Type 1 Diabetics referring to themselves as "diabetic" or "a diabetic". It was lovely because it felt genuine, it felt like their words, it felt unworried, unsanitized! but in a great way!

Discussions followed, as they generally do following a conference, "Diabetic" was in use again in some quarters and I'm delighted. I'm delighted that individuals who manage the condition are talking, engaging and using their words to describe their diabetes and related experiences.

Language Matters has been a well used phrase and hashtag for several years, now. I agree with it. I fully agree that language matters, as attitude matters, as being respectful matters and as every aspect of being a decent human being matters. Sometimes, we'll likely all fail on those "matters" for whatever reason. We're only human and we all make mistakes with the words we use and the attitude we display towards others and that includes HCPs.

So, fast forward a couple of days and I've been discussing an interview with another person who lives with T1D. He's certainly well known to the general public but we're new to each other. Before we discussed the potential interview, he asked for some examples of my involvement with the world of diabetes. Fair enough. I don't keep a list of "things" that I've done which involve diabetes. I remember things! or, at least I thought I did. It turns out that I've stuck my oar into more than I realise. After a search around, I sent some links and more information. I'll wait to see if the interview happens, fingers crossed.

That little digression does relate to the subject in this blog. I found this piece which I wrote in 2018 for Diabetes Voice; The Impact of Language in Diabetes 

That's right, that's me looking sharp in a suit. After reading through my words of 3 years ago, I've come to the same conclusion; That there are far more important aspects of my healthcare than the words used to describe my diabetes, my management of it and its current status. To some degree, attitude pales in comparison to the importance of my health. I'm a friendly chap, generally, I like a chat and try to get along with everybody I meet but I'd rather a horrible, angry, heart surgeon saved my life than my best mate having a crack with a penknife... I'm rambling, sorry.

We're all different, I know, I get it. Perhaps my stance over Language Matters is soft because of the longevity of my T1D and the serious complications which I've battled along the way. Others react in a demonstrous fashion over words and that's fine. I respect that stance. It can only serve to reduce negative experiences to patients in the clinic. 

How much we, the general public, the PWDs, the diabetics! need to be reminded of Language Matters is something I'm beginning to question. To keep the subject relevant with HCPs is something I agree with. To push it via social media again and again? I wonder if it's more a case of Content Matters in some diabetes circles.

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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Fear

 The difficulties of T1D have been chewed over and over for years. New difficulties appear, from time to time, as people become comfortable or brave enough to start talking about them openly. I think we've seen that, recently with eating disorders and the mental health impacts on individuals living with Type 1 Diabetes. 

That's good, right? If we talk and share experiences then others don't feel alone, HCPs take notice, treatments and referrals can happen, we can get better or maintain health. I've always been a sharer in regards to my diabetes and, if you know me well enough you know that I encourage others to talk as openly as they care to.

It's not easy to share. At some point you'll probably be on the receiving end of negativity. Eventually, somebody will likely tell you that you are "attention seeking" or "showing off". That may be true. Social media is a place for seeking attention for engagement and I'm certainly guilty of showing off... I'm a sharer, remember? but for the right reasons. You may also be on the receiving end of self doubt. Did you share too much? Eek! Perhaps it's time for a social media break or to even abandon your accounts entirely and become a lurker, a reader, no longer sharing because it's safer that way. That happens. It's a shame when it does but it's also understandable. The Internet can be a vicious place, a scary place. #DOC is not an exception.

Social media fear is certainly a thing. I know I've written many tweets and decided against sending them. Sometimes I light fires on Twitter but I really do prefer the peace. Honestly, I do!

Fear plays a huge role in living with diabetes. I've read countless tweets from people who are frightened of what's happening to them and what might happen to them. The eye clinic, the lasers, the blood tests, are my kidneys okay? why have I got pins and needles in my foot? That chest pain.... Perhaps some of those are familiar to you. And your reaction? Fear.

Fear of complications and fear of dying seems natural. After 36 years T1D and a good taste of eye complications, I still "feel the fear". I don't think about things each day but, from time to time I get that moment where everything stops and my brain is entirely focused on what I have. Then it's gone. That briefest moment containing all the fear, all the self pity, all the anger and sadness. It might only be a split second! It feels like I've swallowed an anvil. Then it's gone.

What's the solution? 

I suspect the answer is in acceptance and to expedite acceptance probably means therapy, if not for all then for many. 

Right now, I don't think therapy would serve much purpose for me. I do, however think the newly diagnosed should be seeing a therapist as routinely as a dietician, perhaps even more frequently. And for as long as it takes. 

I reached the stage of acceptance a long time ago. Fear still crippled me when eye complications appeared on the horizon. My head went into the sand and instead of facing up to some uncomfortable weeks and months and coming out relatively unscathed, I hid away and my reward was a lifetime of visual impairment after two years of surgeries and pain. 

Would the news of eye complications and an offer of therapy have helped me? Possibly. I may have faced the fear of lasers and injections instead of pretending it wasn't happening. 

Could it help others? Possibly.

Is it time for newly diagnosed diabetics and people diagnosed with complications from diabetes to be offered immediate, on site, therapy as a matter of urgency and total normality?

You tell me! The comments box is below.  

Shoulders

Brrrrrrr!

You read the blog title and you thought 'He's going to waste my time, talking about frozen shoulders'

You're not wrong! 

But I'll talk about shoulders in a different way, too. 

Let's start with the frozen thing because the cold REALLY bothers me anyway. I heard some friends talking about "Frozen shoulder" a couple of years ago. I didn't really give it a great deal of attention, assuming it may just be a coincidence that they have Type 1 Diabetes and Frozen Shoulder. I also remember seeing it mentioned infrequently on Twitter but didn't think much of it. I didn't have any issues in the shoulders and, after over 3 decades in the T1D club, thought it might be a rare complication that won't "get me".

Yeah. So, I probably have a frozen shoulder. I say "probably" because nobody seems sure and with everything being very virusy right now nobody is really keen to investigate in detail or send me for a scan.

It all started back in August/September 2020. I woke up, feeling very stiff (giggity). The kind of feeling you get if you've slept in an unusual position. The stiffness wore off as the morning progressed but then I noticed sharp "electric shock" pains in my shoulder if I raised my arm or stretched. The feeling continued for a few weeks until I called for medical advice. Physio began, as did Naproxen for the pain - later replaced with Cocodamol.

4 to 5 months later, things have improved but it's "still there". It doesn't often affect me during the day but I do have trouble getting comfortable in bed. It seems to be slowly getting better. I have no advice on how to avoid this happening to you. With other complications, we know to go for screening, get our feet checked and hand a tube of urine to a nurse - those checks are supposed to stop things becoming too bad for various complications. With shoulders? Nope. If you get it then your options appear to be physio or steroid injections. They may or may not help. If you know of things to do to avoid Frozen Shoulder or you just want to share your experience then write in the comments below.

We all need somebody to lean on

The next part of this blog isn't strictly shoulder related. In fact, it has nothing to do with shoulders in the physical sense. However "if you need a shoulder to lean on" is a well used metaphor when it comes to offering yourself in the support of others. So, what I really want to talk about is support and, in some quarters, the complaints about lack of support specifically from the #GBDoc community.

I have no complaints. Absolutely none. From the first few days on Twitter, I have always felt welcomed and engaged by many members of the community. I have become good friends with some. Others have offered valuable advice and direction to me. It's rare that I will go a day without some form of engagement within #GBDoc.

That seemingly isn't (or hasn't been) the case for a few others. At first, it seems inexplicable. Why would people choose to not engage or help specific people? I think I've found one reason. It may not be the only reason; For the ones complaining there is a common theme: Aggression. 

It's not a case of continuous aggressive or angry tweeting. It may not be frequent at all. It happens often enough, though to turn people away. That aggression may materialise more when a complainer doesn't get the desired response or support to their tweets. It can be passive-aggressive in nature or just outright insulting. They feel entitled to responses and when they don't get them their first port of call is to state their achievements. You might remember some, as you read this. Here are a few which come to my mind:

- I've had diabetes for 26 years and I've been tweeting for 5 years but nobody answers me.

- I have a PhD but I'm never listened to.

- I've done all of this to raise awareness of T1D.

Are we, the more mild mannered to blame for their neglect? Should we turn a blind eye to the anger and sense of entitlement and feed their needs? reply to their every tweet? buy their merchandise? offer them a place at conferences to speak?

I think not. 

Nobody is more important than anybody else when it comes to online peer support. We're lucky that it exists! and as previously mentioned in this blog, you only get what you give. Be kind, offer your shoulder to support others in their time of need and you won't ever need to worry when you need a little attention.

Complicated

I think the majority of you will know about the complications associated with Type 1 Diabetes. Perhaps they were hammered into you at a young age? I remember a DSN once offering me a tour of the amputations ward and promising me that was my future if I didn't "buck up" my ideas. I was probably 12 years old and the invite didn't make me buck up my ideas in the slightest. Perhaps you've read leaflets or things on the Internet? Or even a had some kind words spoken to you by a HCP. The point is we mostly know about the eye things (I certainly do!) and the kidney stuff and the dickie hearts and the nerve damage. Yep, we know the big stuff already. They're scary but we carry on and we do our best because what choice is there?

What doesn't get mentioned as often, perhaps because they don't make sexy headlines, are the less serious but arguably more frequent complications.

I've had a sore and stiff shoulder for a couple of months. It's gradually become worse to the point that I've sought medical attention. It looks like it might be a frozen shoulder, at this stage. I'm taking Naproxen and I'm about to embark on 2 weeks of exercises before the physiotherapist decides on the next move. Before my "embracing" of my diabetes and jumping head first into social media I had no idea that frozen shoulders were associated with diabetes or even what a frozen shoulder was! Another great reason to join in with your peers on social media, I guess.

Shoulder aside, the latest possible complication on my diabetes journey has brought the other lesser-spoken-about complications to my mind. I'm delighted that mental health has been spoken about more often in relation to diabetes, as are eating disorders and perhaps a bigger focus will fall on those in the years to come but what about the other "niggly" complaints that we shy away from or just shoulder (pardon the pun) the burden of quietly?

Let's get straight into the biggest "little" one! Sexual dysfunction. @diabetic_me and I have spoken about this one, albeit briefly in a podcast. Following those few minutes of audio back in 2019, several men got in contact with me to tell me about their problems and to ask advice. I'm not a medical professional and don't give advice so I could only offer supportive replies and suggest a chat with their HCPs. The common reply was that they couldn't because they were embarrassed. I've heard of similar issues facing women too. I cannot find an explanation as to why it is embarrassing. I wonder if the smirks and jokes from our youth remain fresh in the memory as an adult? Perhaps the jokes and bullying online make it too much of a risk to talk about. I wonder, if I ever needed help for this complication, would I seek it? Honestly, probably not. I'd probably look for a private and no doubt expensive solution. And this is me! I'll talk to anybody about anything, right? Still, the stigma. I get it. It needs to end for both men and women. 

So, HCPs! If it's an embarrassing subject, bring it up! (stop making me pun) and treat it as a matter of fact health check. 

How about something more common? Fatigue. Everybody gets tired, don't they? But have you ever worked a long day with high blood glucose, peeing out every fluid in your body because you over treated a biblical hypo at 3am from the night before? You were so full and bloated after that hypo that you couldn't sleep and had stomach cramps. But you had to work. Another sick day doesn't look great. So, in you go. Bloodshot eyes and into autopilot.

Perhaps that fatigue brought on a migraine when you got home? You couldn't really eat much dinner, which you'd bolused for, and it sent you hypo again. So you're trying to stay alive now while feeling nauseous and that headache isn't getting any better.

Meanwhile you're ignoring your friends and family. They want to talk to you, see you, go out for a meal or a drink or do something fun. But your head is throbbing and mostly over your toilet bowl as you throw up that bottle of energy drink which you drank too quickly to fix the hypo.

Fatigue, I would argue, is certainly a complication of diabetes that you're almost guaranteed to get at times. Nobody appreciates the luxury of a full nights sleep like a T1D.

What else? How about those grouchy moods? When you're hypo and somebody dares to exist in your company. Or hyper! and that day in 2004 when somebody jumped the queue in the coffee shop! Grrrrr! Is mood a complication? I certainly feel less my "normal chirpy self" at the top and bottom end of the scale.

How can these things (and others) be resolved? I think talking openly is a great starting point. Shall we continue? Tell me what other problems diabetes causes you in the comments box below.