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.  

2nd Class Diabetes

'We'd like to invite our Upper Class Diabetics to board first.'

'Thank you for your patience. We'd like to invite our Premium Diabetics to board'

'Are you guys still here?'

'K, I guess you test strip users can get on board'

It's Super Bowl weekend! and all the talk on Diabetes Social Media is of Nick Jonas and the Dexcom ad'. That's not entirely unexpected. I remember the first diabetes tech ads on UK TV causing much discussion, so it seem natural that one of the most expensive advertising slots in the world would attract some interest when diabetes tech is featured.

I watched the ad' earlier, following a JDRF UK tweet which suggested the impossibly good-looking Jonas was bringing Type 1 Diabetes awareness to the Super Bowl. That tweet is here if you'd like to read it.

Let's watch the commercial! 

If you're using your phone and the video isn't embedded above then you can watch the video here

What do you all think? Are the unaware of Type 1 Diabetes viewers going to be woke?

Possibly! 

Firstly, type isn't mentioned here. Just 'Diabetes' which, on it's own, is fine IMO. Perhaps all types of diabetes can benefit by using tech. I have T1D. It isn't mentioned. So bringing awareness of my condition to the Super Bowl viewers isn't really happening. Indeed, it might be argued that the ad' is damaging and breeding the ignorance that all diabetes types are the same. We know they're not. That's not throwing any type of diabetic under the bus, it's simply a fact. JDRF UK is a Type 1 Diabetes charity, remember.

Next up! "Finger sticks, really?" says the heartthrob. Yes! REALLY! What a horrible piece of marketing to the US viewers who are struggling to buy their insulin, rationing their life saving drugs AND their finger sticks. Can you imagine settling down to watch the game and, after taking your second and last finger prick of the day because that's all you can afford, you're greeted by Jonas. Finger sticks, really?

Wow.

I know it isn't down to the CGM company in the ad' to reduce the prices of insulin and test sticks and everything that goes along with having diabetes (any type). But it isn't alright to openly mock those who rely on those things to get by. Not by choice, remember. Many Americans (and nationals of other countries) buy what they can afford for their health. A CGM can be a luxury which is currently unobtainable for many.

I see this "class" system in various aspects of diabetes. Fortunately, in the UK we appear to have sights on a level playing field, thanks to the likes of Prof Partha Kar OBE. But in America and other countries? I can only imagine the thoughts of "What fresh hell is this?" when you watch that commercial and you're struggling to afford the diabetes meds and tech that you need.

Finger prickers, I love you guys. Don't give up fighting for the things you need at affordable prices. You're NOT a 2nd class diabetic.

 

Shares in Diabetes

Diabetes is certainly a long term investment. Selling out would be great, wouldn't it?

Sadly, this particular deal is locked in for life. Unless, of course, there is a cure in around... oh, shall we say 5 years?

I can already imagine that you're reading this and demanding to know what this blog is about. Shares? in Diabetes?

Like the FTSE Check 100? 

Or the Low Jones!

Maybe it's going to be something related to Pharma and their Banting Juice businesses.

No. What I'm going to write about today is the sharing of information in regards to your diabetes. The passing of tips, the screenshots from heaven (or hell), the freely offered resources you have stored in your brain from your diabetes experiences. Perhaps your HbA1c! Eeek!

I think it's all marvellous. I think it's really useful to hear about the experiences of others but not to compare myself or make myself feel like a failure because somebody had a better day than me. It's great to read about the successes and the tone of excitement in a tweet when the sender feels good about how they're managing their condition. I love that! and I take huge encouragement from A1cs which are lower than mine, TIRs that are higher than mine and people living great, long lives with Type 1 Diabetes.

I know sharing isn't for everybody. I know some take things very personally. I can't offer much advice if that relates to you, only that Diabetes is an endless supply of good and not-so-good times. Everybody has had an awful day but not everybody will tweet about it. 

I TRY to offer both sides of my Diabetes "coin". I tweet about the good days, the awful days and everything in between. I tweet about the things that I shouldn't do, such as reuse my needles and lancets, much to the eye-rolling of the DSNs. 

I won't apologise for that and I won't change. I do actually change my needles now, I mean I won't change what I choose to shares. I do my best to be a real diabetic. I do my best to give my honest views about diabetes. I... just do my best, as I'm sure many of you do. There is no such person as the perfect diabetic.

So, take on board as much shared information as you can. Don't try to emulate anything without proper medical advice. Don't be afraid to offer your views or your experience. You'll be surprised at just how many people you're helping.

Talking of sharing experiences! How do you fancy earning an extra £80 for a quick telephone call? I'll let Anne from QualWorld explain:

We are conducting a market research study among young people (16-20) and carers of children with T1D that would like to share their experiences of living with T1D. We would like to hear from carers of babies, toddlers and children up to the age of 13. Teens between 13 and 15 have the opportunity to participate together with their carer or under the supervision of their carer and express their own opinion, but carers can opt to speak on behalf of their 13 to 15 year olds if they wish to do so.
Participants will receive £80 GBP for a 60 min telephone interview.

To take part just visit: http://tiny.cc/r5b8tz

For information email: anne.verbeke@qual-world.com

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.

Hope

 Hurray! A new "End of the year" blog to read.

I know, everyone and their dogs are writing blogs to end 2020. A look back at one of the most bizarre, terrifying years in modern history. So many things have happened in the last year, it would be a mammoth task to list them all and an incredibly boring blog for you to read. I'll try to keep it short.

Personally, I've met (on-line of course) a lot of new people and I've been lucky enough to have been offered some new opportunities in the world of Diabetes. 

Early on in the pandemic, I spoke about Covid-19 and Diabetes on BBC Radio. It was a fun experience. I haven't listened to the interview but I'm told it sounded fine and I came across well. I've spoken to reporters before and I'm always happy to give the perspective of a person living with T1D. 

I think it's important to hear from people who aren't considered "famous". Their stories are often more relatable and just as impressive to me as any well known person. On the It's Medicinal podcast, we've recently started talking to people from the #GBDoc community who you might not know much about (I promise to publish part 2 soon, Gwynnie) and I hope we can talk to more in 2021 despite three busy lives, Harvey, Jules and I will try our best to create more.

The year saw #EnoughNowDoc appear on Twitter as it became apparent that some men have been sexually harassing women in the diabetes community. The disgusting behaviour of diabetes advocates abusing their privileges caused an uproar both openly on Twitter and within group chats elsewhere. My hope is that such individuals are never welcomed back into what should be a safe place for everybody. They will certainly never be given the time of day by me.

As the pandemic dragged on, conferences and webinars sprouted up. I attended several and was offered an involvement in a couple, sadly I had to decline or withdraw from those but I certainly enjoyed taking part in others as an attendee and will continue to do so in future - hopefully in person as well as on the Internet. The brilliant Diabetes 101 provided many free Tweetorials about various aspects of living with diabetes. Thanks, guys! And, of course the #GBDoc Tweetchat continued, every Weds evening at 9pm with a variety of subjects discussed by different hosts.

I've been a part of the Tweetchat team for almost 2 years and I've witnessed it flourish. I'm 36 years down the road with T1D but the "chats" often throw up new things to me. If you don't take part then you really are missing out.

#GBDoc has also seen the many little "clubs" form, recently. I started the #GBDocQuiz which is still running, monthly, today under the stewardship of the Tweetchat account. Fantasy Football has been a fun distraction, too with 30 teams taking part in the #GBDocFF league. Elsewhere there are GBDoc Stitches for you creative types and a book club.

In the last few months, I've been delighted to use the GlucoMen Day CGM. I firmly believe in transparency when it comes to health related tech, provided for free or as part of a "paid for" deal. With that in mind, for every contracted tweet in relation to GlucoMen, I used the #Ad hashtag and kept a pinned tweet on my timeline. I'm very grateful to Glucomen for the opportunity to use and talk about their CGM. My tweets about the tech have always been honest and my own words.

It has indeed been an interesting year for me in regards to diabetes. Did I mention my best ever HbA1c yet?...

So, we head towards 2021 with the dark cloud of the virus hanging over us. Missed friends and family, especially at Christmas is tough for many of us. But! There is hope! There has to be hope otherwise I'd be screwed for a title for this blog.

The creation of a vaccine is truly incredible news and proof that we, as human beings, can overcome what appears to be insurmountable. Those of us living with T1D for a while already know that. It seems the vaccine will put an end to this virus, it's disruption, misery and grief. It'll just take a little time. My hope is that time won't be as long as we thought. Never give up hope. Life rarely stays the same when we look for and find solutions to our problems.

Thank you for reading this little blog. Merry Christmas to you all and I'm sure we'll all have an amazing 2021 with a new-found perspective and joy for life.

You Get What You Give

New Radicals, I think. If I remember it then it must be a 90s song. I like song lyrics. I feel it's a glimpse into the mind of the writer at that particular time. I like to play around with them and try to make them funny or relatable before tweeting them and waiting for the song recognitions and complains of ear worms. I make no apologies for that. It amuses me and I'm often found singing my cover versions in the shower for a few days after.

You Get What You Give is kind of uplifting. 

'Don't let go'

'Don't give up'

'I feel the music in you'

Lovely stuff, but one line made me think of some aspects of social media and a few (kind) comments sent my way recently; 'You only get what you give'

I couldn't agree more when it comes to the #DOC and the community I'm more involved in the #GBDoc.

I try to be a giver (stop laughing) rather than a taker. And it's really rewarding! I know I'm involved in lots of things such as Tweetchat organising, fantasy football and I harassed a lot of you into playing the Zoom quiz during Lockdown part 1 but I don't see those things as giving. The opposite, in fact. I get so much from being a part of those things that they're really not an effort for me. Doing the things you love is never work.

My giving comes from engagements and my time. I try to answer and acknowledge every tweet reply and message to me. I've nearly 3500 followers on the tweet and close to 1000 on the insta-thing so sometimes a popular "post" turns into an avalanche of engagements. I'll answer, though and I'll take the time to read others' tweets and posts and engage on their subjects too. In return, I've made a lot of friends and opportunities have come my way. I'm amazed when an opportunity is offered to me because I'm just... me? A Joe Bloggs T1D. I don't run marathons or climb mountains. I'm not media famous. I certainly don't have a bikini body. I'm a middle aged man who talks about diabetes on the Internet. 

Perhaps there is something in that? Just trying to be kind and offering your time and experience to others when they ask for it. I don't really know. I'll carry on doing what I do.

I wonder if some have high expectations of online communities? Feeling entitled to various things despite offering very little in return apart from a daily tirade of spam and talking themselves up. Or hurtful passive-aggressive messages followed by bewilderment at being ignored. Certainly, when the community fails to respond appropriately there is a sense of anger and frustration from those individuals. Each to their own, of course but I for one don't feel the music in them.

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.