Diabetes Mentor

 

I mentioned Diabetes Mentoring on Twitter, two days ago. I had no real intentions of discussing it let alone to write a blog post about it but here we are. I wrote about it in passing as I tweeted what was an unusually busy few days of Diabetes related things involving focus groups, podcasts and commercial interests. Then, yesterday, I took a video call from somebody I am mentoring and, as is my want, I tweeted what was a positive experience for me. Again, no real intentions to discuss just an outlet for some positiveness which can be rare for people managing Diabetes. The response has been very encouraging!

Most of my tweets get a few likes and a few comments and that's cool. The mentoring tweet appeared to get more than average engagement, with a couple reaching out to me in direct messages to ask how they can help. Amazing! So, let's get into how this began and where it might go...

...I try to be an open sort of fella on social media. If you tweet me then I'll try to at least acknowledge it or reply to you. If you direct message me then I'll nearly always reply. Why not? social media is about engagement, for me and if you talk to everyone then you can form better, rounded, views of your preferred subjects, for me, mostly Diabetes and mostly T1D. Because of my openness, I've been approached for help and guidance on many Diabetes related issues and I'm very happy to try to help or signpost to someone else who could. Recently, I suggested to one person that it might be better to talk about their issues via a phone call or a video call. That conversation moved to the suggestion of a more frequent "catch up" with each other and so began a mentorship which has progressed well to date. 

Of course, I am only one person and there are some who might welcome a mentor but not me! I get it, I won't take offence at that, so where can that be addressed? It seems apparent that such a thing is needed and if I take into account the interest expressed in helping by others then there is no shortage of potential mentors. 

Safety must be a high priority in such ventures. In my 5 years of Diabetes online engagement, I've seen evidence of horrendous things done and said by individuals who were seen as role models, respected advocates and to this day still hold positions of power and influence within Diabetes organisations. Scary, huh? So, it's vital to never put a single person at risk of exposure to individuals who have nefarious motives. 

Some discussions have taken place within the #GBDoc community already. However, that community (in which I'm very active)  has seen some big changes in the last year and things are still in the process of settling down. A new and potentially large step in the direction of peer supporting will likely take some time and a lot of energy. Still, that would seem the best avenue to direct individuals needing one on one support and potential mentors, while offering a safe environment for all concerned. 

Potential helpers/mentors, I have noted your names and I will keep you up to speed on developments. Please be patient and remember that we're all volunteers within #GBDoc. If you're interested in helping then please let me know.

Do you need support? Then do feel free to send me a direct message on Twitter or you can email me - daddiabetic@gmail.com I can't offer support to everybody but I will try to direct you to someone who can help you if I can't. Obviously, I don't offer medical advice or counselling - If you do need those things then I will direct you to the right places.

That's it for today. A short blog that was too long for a tweet and I hope it sheds some light on that particular subject. Fire any questions at me should you have any. Mentoring is a feel good thing to do. Do you know what else is a feel good thing to do? Helping those who are literally fighting for their lives in war zones such as Ukraine...

...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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Peer Judgement

I've been a vocal advocate of peer support within Diabetes for a long time. It would be strange, in my position, to not be. The list of support, help and friendships offered to me has been incredible and I'll be forever grateful.

Alongside my peer support gushing, I have been deliberate in my attempts at trying to warn others about the potential pitfalls of engaging with peers within Diabetes circles. The ugly side of peer engagement rarely sticks its head above the parapet fortunately but it is there and as more official avenues of care begin to recognise the positives of peer support, I think it is very important to have a firm safeguarding and vetting procedure in place to at least minimise, if not eliminate, the possibility of damaging engagements between people living with Diabetes.

The Internet is a wild place. Anybody can create accounts and spout all kinds of hate, extreme views or health damaging advice.

"He's clearly not using the technology correctly..."

"Perhaps his grocery bill would be lower if..."

"The truth hurts" - A personal favourite of the peer judges.

Those three came from one person, a person who lives very locally to me and who (at the time) was claiming to be an active volunteer for Diabetes UK. He wasn't a volunteer, of course and it became apparent that he had aired his views about others' Diabetes management across social media resulting in various bans and outrage from other peers.

I think the great thing about Diabetes Twitter is the unquestioning welcoming and support of new people. I hope that remains because we were all newly diagnosed and frightened, once. I hope that remains despite the recent welcoming of an individual who claimed to be a student nurse, recently diagnosed with T1D. Tonnes of love and support from various quarters arrived in his life. At the same time his true colours became apparent. The colours of a racist, ableist, liar. The Twitter community noticed and large numbers were quick to express their displeasure before turning their back on that person.

This week, I passed the two month mark in my pumping journey. It's been great and I felt very encouraged by the real life changes as well as the improved numbers. I tweeted my numbers for a comparison to my life as a Diabetic on MDI. Much positivity followed until this reply:

"So clearly not worth having such an unsightly pump?! What gets to me is how damn ugly & unsexy all related to diabetes is!"

I did reply, later on but when I read that response I was angry. I was angry for others more than myself because I'm a man in my mid 40s and, after living a life with disability, I am almost numb to hurtful comments. I was angry for the newly diagnosed, the children, the impressionable, the low on confidence... I can't imagine how the teenager felt, after starting pump therapy recently, once they had read that response. How would you have felt? So, I didn't reply immediately. I retweeted the comment and invited others to share their views. It's a few days later, now and their tweet is still attracting replies. I think that underlines the strength of feeling and the general dismay.

What does pop up occasionally, if I've highlighted something which is horribly offensive, discrimination or possibly damaging to the health of others is the old "They're allowed an opinion" response. Sometimes dressed as freedom of speech and sometimes with a heavy hint of accusation with a #ThoughtPolice hashtag. Here's the deal; If a person responds to something you've done or said with words that express offense, that they feel discriminated against, that they're worried your words or actions could be damaging, then it's probably not for fun. It takes bravery for a person to call out these things. Then it's down to you to take a breath and consider if they have a point, was it a misunderstanding you can clear up or do you need to re-evaluate things? Perhaps even apologise!? I think everybody should be free to express themselves if that expression is not going to cause distress or damage to another person or persons. That would seem to be a reasonable, kind way to live and engage with others.

Words which struck a chord with me came from Dan Newman (@T1D_Dan) when the subject of harassment came up during an online conference. Dan said that if you read something which you don't like then simply block that account. He's right. You're not obliged to respond to anybody and your only duty on social media is to that of your own well being. You may be questioned, I certainly have been, about why you've blocked X, Y or Z. You don't owe any explanations to anybody. Do all your social media in a way which is comfortable for you and not others.

It seems that peer support could be a part of your Diabetes care through the NHS in the future. To the decision makers, the leaders, I encourage you to tread carefully by vetting each person you enlist, reading their social media and asking others for thoughts. If you offer somebody a job then you ask for references, don't you? and to everybody else online or otherwise; Stranger danger. 

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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Representation

 Diabetes in the public eye has to be a great thing, right? A diverse representation of all types of people can only reduce division, hate and normalise disabilities, including Diabetes.

Coronation Street got the Type 1 ball rolling a few weeks ago and last week Pixar joined the Diabetes party with a character in their Turning Red movie, seemingly wearing Diabetes devices. Both great things for Diabetics, particularly the Coronation St character as it appears they'll be focusing on the condition more than the Pixar movie's passing nod towards it. I hope the Coronation St character will be allowed to develop in the coming years and the difficulties of living with T1D are brought to the public attention, at least the public who still watch that particular soap opera.

Beyond the recent TV and movie rep', I've been thinking about others who have proudly acknowledged that they have Diabetes. In the mid and late 1980s, as a young boy, my only "Celebrity Diabetic" was Gary Mabbutt. Gary played for Spurs and was capped by England and he is still well known in Diabetic circles today, particularly football fans. That was it, for me. I'm sure there were others but Diabetes was a much less visible condition beyond the Diabetes clinic at the hospital.

Technology has made Diabetes a visible, talked about thing. It's forced the hand of Diabetics to become that bit more public about their condition. A pump, CGM or even a small Libre disc are physical signs which are often hard to hide compared to the sneaky finger pricks and injections, done covertly or behind closed bathroom doors. Perhaps we have more to thank technology for than simply improving the management of our condition? It's out there! WE are out there!

Not everybody uses technology, of course (despite what you might see on social media). Perhaps some will still hide it because years of conditioning can take a long time to overcome. So, representation is important in other ways. Representation by the masses (our peers) is increasing and I believe that is the most important way to have Diabetes seen by the general public, a general public which still struggles to understand types and which holds ideas of Diabetes, that are ignorant and harmful, firmly in their minds.

How you represent is individual to you, your life and your comfort zone. I speak and write about it in various places and I choose to do so using what I consider to be an effective method. Your methods might be different, of course. What is important to you in regards to Diabetes is almost certain to be different to me and others, too. A brief look through Twitter will reveal a variety of subjects, pushed as hugely important and they may indeed be that to a minority which could include you, or other aspects of Diabetes might be higher on your agenda of importance. What is important for us all is to talk about Diabetes, type if you wish, specific things relating to it if you wish, openly.

Social media is an easy place to air views and share your experiences. It's an easy place to represent D. If that's your comfort zone then embrace it and go to town! It can have a surprising, positive, effect. I'm astounded at the positive comments which have been sent my way in the last couple of years since growing a social media presence. All I do is share my experiences and views while engaging with my peers. 

We don't always agree, either! and that's an important part of life, too. To accept that others have their views and opinions on their own condition and health and subjects relating to it. It's important to not turn those times into arguments, to not bully or name-call or reduce yourself. The people who do that are not helping to represent. Using aggressive, "industrial" language does not help to represent - Do you want your children to read frequent use of the F word? Your choice, of course! I'm far from a prude and I have certainly used foul language and a harsh "tone" before. Within Diabetes, I try to keep it family friendly. That's not because I'm focused on engaging with families. It's because it's much harder to alienate or offend anybody of any age when the language is PG and the tone is soft.

I encourage everybody living with Diabetes to share their views. Talking about it is great representation for your peers and yourself. It's normal to have a health condition or a disability. Don't hide.

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

Diabetes+

If you're a frequent user of social media platforms, and your use of such platforms is based around Diabetes, then you're probably well versed in the terminology and acronyms which surround our condition.

It can be a confusing place for the newbie. There are docs everywhere but they're not medically qualified. T1D, T2D, LADA, MDI, BG, TBR, TIR, HbA1c... Diaversery, Diabuddy, Diabestie... My own accounts are littered with a bewildering array of references to Banting Juice and feeling Hypo Twatted and all under the influence of caffeine.

I love it all. If you can't work out these little sayings and acronyms then it's perfectly fine to ask. Put a hashtag at the front of those words and you might get a bigger audience. Twitter, my favourite platform, has a character limit so it makes sense to use such acronyms when tweeting. So far, I've resisted the urge to use BJ when discussing Banting Juice (insulin). There are puerile minds on the Internet. Not mine, obvs!

That brings me along to Diabetes+ It's not a term that I've used before but it's one that springs to my mind when I notice others discussing a positive (+) aspect of life in relation to their Diabetes. How can there be a positive to Diabetes!? You exclaim, finger hovering over the 'Unfollow Diabetic Dad' button. Positives aren't to be found within having the condition, at least not that I've found, but within the new experiences and relationships that the condition allows.

You don't need to look far for a new positive from Diabetes. It could be that your management of the condition is improved because of simply reading the social media messages of others, absorbing information and keeping up to date with the latest happenings on Planet D. That alone is a superb thing. If that's your Diabetes+ then I'm really pleased for you. My personal Diabetes+ goes much, much further.

Reading and engaging with peers has been a huge positive for me, too. Beyond that I've discovered, to my surprise, that I quite like people and meeting them, getting to know them and in some cases becoming good friends with them. It's always good to have something in common, right? misery loves company or something. I'm kidding! I've never had a miserable experience when meeting a fellow diabetic or a person who works within Diabetes, business or healthcare. I've never experienced this before. At various points in my life, I've met with many people on a social level; Work colleagues, friends dating back to school days, football friends, poker player friends, the list is long and within each "category" there were a good number of people who left me feeling negative about my encounters with them. Personalities and opinions do clash, of course but it appears to happen to a much lesser extent within the peer support and friendship circles of Diabetes. I wonder if that's because we have an understanding of the struggle which we might not with the organic insulin growers of the world?

Prior to fully engaging with my Diabetes, I was somewhat of a recluse. I certainly had and still have, to a lesser degree now, social anxiety. That lesser degree has reduced massively and continues to do so following each "meet up" or conference. It's like being fed a little more confidence each time.

I know, I talk about Diabetes a lot. I do that YouTube thing, I'm all up in your grill about Diabetes whenever you try to get a minutes peace on Twitter, I've written things (you're reading one now) I've been on the radio and I've many irons in many fires. That doesn't mean that social anxiety, in the flesh, isn't a very real thing. 

Prior to the Covid-19 pandemic, my confidence levels were very high when it came to meeting others. Now we've been locked away for more than a year, I would be a liar to suggest that I feel just as I did at the beginning of 2020. There has been a step back but I'm determined to rediscover that Diabetes+ again by meeting more people who have Diabetes, when it becomes safe to do so. And we're nearly there! I'm not far away from my second dose of the Covid vaccine and a few weeks after that? I'll be as protected as I can be from that bastard of a disease.

Baby steps, though. The plan is to meet a couple of other friends in a park, distance, drink coffee (tea if you prefer, Carolyn) and chat. As the UK opens up, I hope more occasions like that will happen and my Diabetes+ continues to grow for many years to come.

I hope this blog has been a tale of positivity. Do you have a Diabetes+ ? Go ahead and tell me about it in the comments box below or just send me a tweet.

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

Diabetes Community Fragments

 

It hasn't been very long since my last blog and I'm glad about that. I seem to be slipping into the habit of writing one or two blogs per week. I write when something related to diabetes is on my mind. Often it's topical, such as the last blog about Diabetes Jokes, sometimes it's simply related to an experience that I'd like to get off my chest. I'm glad it hasn't been long since my last blog because that particular incident ended on a positive note and I feel like I can move away from that, at least for the time being! and talk about something else.

I intended to write about peer support in the Diabetes Community, over the Easter weekend. That was put on the back burner until today. Now, it's time to boil up that pot!

There has been a lot of chatter stemming from some of the larger Twitter accounts about peer support within DOC, GBDoc and many other area specific communities, of late. What usually happens when a few larger accounts "make some noise" is that many others suffer a severe case of FOMO. What on earth is FOMO? It's Fear Of Missing Out. From there, those accounts will usually jump aboard the bandwagon, whether it is positive or negative in nature. FOMO is a real thing for some diabetes related accounts, as is the need to stay relevant and have content. I'll get back to that on another occasion because I'm digressing and that is a subject for a blog all on its own.

Peer support! Yes. We love it, don't we? The drum that I've been banging around peer support is very much a beaten one. I've spoken about the positives and the huge impact it has had on my diabetes management, from overcoming social anxieties to accessing diabetes technology and everything in between, not least gaining lots of friends along the way. I am massively grateful for my peers, mostly within #GBDoc #IREDoc and #NIDoc and I will happily give those people my time and support whenever I am able.

It sounds fantastic. It mostly is. There are, however things I'd like to note and offer some caution over:

- Peer support isn't for everybody.

Just as tech isn't for everybody and we're all different in the way we manage our diabetes, it's important to realise that peer support won't be welcomed by everyone. To have it offered and easily accessible is wonderful but it should never be forced on a PWD. As peer support talk is appearing in healthcare circles, I am very interested to see how this is brought into conversation between HCP and patient.

- Fragmented communities.

It's a schoolyard out there. Ready for a few negatives? Envy, Bullying, Harassment, Stalkers, Drama, Sex, Lies and Videotape!  All of those things can happen in any splinter of society. The more people that are clustered together, the more chance of something nasty happening. From the nasty incidents, the communities become fragmented as individuals "take sides". The subtweets begin, the DMs are sent... sigh, it can get very teenagery even among mature adults. Eventually, people grow tired of the drama and aggression and they leave the community or lock their accounts or simply block those who are the sources of negativity. Personally, I'm a blocker. 

- Leader of the gang.

Does a community need a leader or leaders? I've debated the issue with friends many times. I'm swayed towards No. I've heard some people describe others as "Prominent members of GBDoc" in reference to holding their views in higher regard. That sits uncomfortably with me and has a strong odour of The Old Boy's Club about it. It hints at a pecking order which shouldn't exist on a free to use social media platform. Status and follower numbers do not influence me. I think it's important to hold each other in the same high regard unless words or actions indicate otherwise. So, should Peer Support "Leaders" become a thing then I think we could be in danger of following the path of Advocates and frequently heard public speakers. Which path? Read this blog: Hearing Voices I really hope we don't repeat the mistake of repeating the voices, should the NHS begin selecting peer support leaders.

I've expressed some caution there but please do not be put off diabetes communities. Where ever you find one, which might be helpful to you in managing your diabetes, join in and engage. For the most part, they are wonderful places with wonderful people.

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

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.