Tuesday, August 24, 2021

The Path To Pumping - Pt.2 The Gift


'Are you pumping already? That was fast!' Well, yes and no. No, as I write this but hopefully Yes within 24 hours of publishing and once this blog goes viral. What? I go viral! Some of my tweets get like... 8 Likes!

Welcome to Part 2 of The Path To Pumping. I've titled this one "The Gift" because that's exactly what you see in the photo above. I'm a firm believer in "Pay it forward", especially in relation to Diabetes. That's not because I'm trying to buy my way into the good books or affections of others. It just feels good to help others who need it. It's a great form of peer support and paying it forward can come from gifting or loaning equipment, such as a pump or just sharing your knowledge and experiences. This blog is also dedicated to my friend for making a monumental effort in gifting me this pump, one of the kindest and hardest working people you could ever meet. I am truly blessed.

So, how does this impact upon me getting a pump through the official NHS channels? I'm still following that route and the ball is firmly in the court of DAFNE. If you've followed some of my tweets then you might know that getting an appointment there hasn't been a smooth process. Following my Diabetes review and agreement to attend DAFNE as a gateway to pumping, a letter arrived in the post which invited me to make a registration appointment to find out about the course. K, can do. I sent an email to no response. After 2 days, I sent a follow up email, stressing that the clock was ticking on arranging this appointment and being appreciative of a soonest reply. The NHS letter stressed that I must arrange an appointment within 2 weeks. Sadly, no response. Perhaps emails aren't routinely checked. I still have a week until my deadline at this stage. I let the weekend pass and then I tried a phone call on the Monday morning and voicemail picked it up. I left my details and politely asked for a call back, again expressing concern that this is a time sensitive appointment as noted in the letter. No return call happened and I tried again at 4.30pm, around 7 hours later. No ringing tone, this time just straight to voicemail. I hung up, not wanting to leave multiple voicemails about the same issue. Tuesday arrived. Tick-tock. Just before midday, I called again and finally spoke to a real person! Apparently, she was going to call me back. We arranged the registration appointment (telephone) for late September. 

So, that's that. But, not really. After making noises on Twitter, it became apparent that education/training isn't necessary for access to technology. I shouldn't need my GCSE in DAFNE to be offered pump funding. The temptation now is to refuse the course, dig my heels in and start quoting NICE guidelines. But! I'm a Joe Bloggs Diabetic, the everyday chap with T1D who has walked in, off the street because he's heard that pump therapy might make his Diabetes management better, provide a better long term outcome and reduce his day to day burden. I'll take the course because that's what the Joe Bloggs Diabetic would've been advised to do, what I've been advised to do. What you may be asked to do. Not everybody knows about guidelines or the right people to follow on Twitter.

Enough DAFNE, for now. 

The pump!

Right, I've loaded my small and over-worked brain with information, I have support from friends and anonymous HCPs. I'm ready to go! When my Lantus isn't on board., which'll be tomorrow morning. Today, I'll be checking and double checking and probably Zooming with pumping friends to be sure that I'm not going to make an enormous balls up. Assuming all goes well and things are settled, in a few weeks or maybe months I will investigate Looping through this pump but that's something for the future. The now is for getting used to pumping and not injecting anything. The very thought of not injecting insulin is completely alien to me. I do that approximately 60 times a week. I've never smoked but I wonder if this going "cold turkey" from injections might be similar. Old habits die hard and all that.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

Wednesday, August 18, 2021

Meeting Diabetes Peers

 


Another peer support blog? Kind of! But without the warnings, the concerns or possible problems. I'm going to focus entirely on the positive. Yes, I'm feeling alright.

I think we've reached a stage of twitchiness. 18 months of pandemic and avoiding the general public has been hard work and I say that as a pretty "happy to be alone" sort of chap. The horribly named Freedom Day signalled that it was time to interact a little more without the aid of Zoom or other video call apps. I've tried it a few times, now. Wow! have I missed it. The old saying of "you don't miss it until it's gone" really has applied when it comes to meeting my peers from the world of Diabetes.

Last weekend, a bunch of Diabetes and GBDoc folk & families met up to celebrate the 50th birthday of GBDoc Queen Jules. It was an outdoor event and, despite a brief rain shower, it felt entirely comfortable and Covid safe. It was fantastic to see familiar faces alongside a few new ones and I regret having to leave early, missing other great individuals from the Twitterverse. It was nice to see such interest in the event, despite it being a semi-invite only thing - as much as you can have an invite only event in a park. The majority of people responded to the messaged invites sent by Beth (Diadarl1) and myself and I know that Jules was very appreciative of those who RSVP'd without her chasing up.

Never been to a meet up? Neither had I until 2018. My Twitter persona might indicate otherwise but please don't assume confidence from a written word. I'm a quiet man and still suffer from social anxiety but to a much lesser extent than 3 or 4 years ago. Those early days of meeting my peers greatly reduced that social anxiety. Subsequently, I've hosted a video podcast, video quizzes, gave interviews to the media including BBC radio, took part in JDRF Fusion and stood in front of a room full of business people to talk about my CGM. All of those things and possibly others in the future (wink, wink!) are reaped from the seed sown at that first Diabetes meet up. Are you still undecided about meeting your peers? 

It's not all Diabetes, you know? Seriously, it's not. Everybody might be wearing Eau De Banting and there might be a hypo or two knocking around but the conversation isn't all Diabetes based. Don't worry about being bored, I never have been, just talk to your favourites from social media. You might have a question or two so just ask! I will be...

...and that'll be at the next "meet up" which is going to be much smaller in size but equally as glamourous as a park. I'm heading North to meet Dawnie (Moodwife) who is heading South to talk about pumping and looping and possibly coffee. The subject, for me at least, is exciting enough because I'm attempting to move from MDI to pumping which will likely lead to looping and to learn from your peers is the greatest education. It's also massively exciting because it's Dawnie! C'mon! 

And on we go. Talk is of other get togethers in other areas of the UK for GBDoc. I hope such talk bears fruit and I can meet others from this amazing community. Did you see the TAD announcement for March 2022? Maybe see you there! and at many other things for years to come.

I told you this would be a positive blog.

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!

Friday, August 6, 2021

Quack, Quack!


I'm afraid that you have Type 1 Diabetes. Have you tried a leech on your pancreas?

Before I get into it, today. I'd like to address the lovely comments and discussion that surrounded my last blog; The Path To Pumping Pt.1 Over 1,500 of you have read that and I'm astounded by that figure. I really will be following that up in the coming months.

Alrighty then! It's 2021 and Quackery is alive and well. It might even be thriving! Last week, my blog was spammed a total of 18 times from an individual in Ghana who promised cures for pretty much everything, ranging from Herpes to HIV. Diabetes got a mention, of course. Fast-forward to today and something involving salmon placentas and stem cells arrived in my inbox. Those aren't the only incidents, either. Throughout my time using the Internet, some 26 years, that kind of quackery has been an almost constant event. 

I think I'm well enough informed to never have fallen for such nonsense even in the early days. It's persistence and longevity does worry me, however. If there was never a buyer for such ridiculous advice then there wouldn't be a market. Since the dawn of the Internet, I wonder how many desperate people have become seriously ill or died from the advice of Quacks? It's terrifying to consider.

Not all advice is quackery, of course. Mansplaining, for example isn't usually a money making exercise. A keyboard and an urge to feel important and knowledgeable is enough motivation. Incidentally, men rarely mansplain to me. Make of that what you will. Advice, even in well meaning forms can be a dangerous thing. As Diabetics, we administer dangerous drugs to ourselves and just a small miscalculation can have dramatic, perhaps fatal, results. 

When it comes to the Internet, especially social media it's still the Wild West for medical advice. There are warnings on some platforms when keywords are picked up. Covid is a great example and Facebook appears to be taking some notice to SOME problems surrounding dangerous advice. Twitter is not and that's really disappointing. It's easy to report tweets and accounts for lots of terrible things but when it comes to dangerous, misinformation around health? Nothing. It's left to us as Twitter users to decide on what is correct and good information and what might put us in our graves. That needs to be addressed as a matter of urgency. Stronger content policing would serve social media platforms and the users well but if that will happen is debatable. Why? Well, content means views and views mean ad' impressions. Impressions mean income. Are the social media platforms really interested in taking care of us or taking care of their shareholders? 

I feel the eyes of the Freedom Of Speech brigade, muttering something about the "Thought Police" because they can't grasp how their bright ideas expressed through the Internet might damage others. They likely never will. Did anybody change their opinions and admit to being wrong on the Internet?

I think the Internet and social media are great places to get wonderful information and support. They're imperfect, of course and so is general society. I encourage treading carefully when it comes to your health and online advice. Would you listen to a stranger in the park in regards to your insulin dosage? I didn't think so. What's different to the stranger on Twitter?

I feel like this little blog has become a public safety information message which the majority probably don't need. If nobody was buying those pancreas leeches, though... 

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!