Showing posts with label looping. Show all posts
Showing posts with label looping. Show all posts

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!

Saturday, April 17, 2021

Diabetes Decisions

The Thinker

Life is an endless list of decisions. It can be as mundane as what socks we're going to wear today or something as serious as a relationship or job choice. Whoever you are, decisions are an inevitable part of life.

Diabetes isn't a decision, largely. I know Type 2 Diabetes can be avoided or delayed in SOME people but for individuals like me, with Type 1 Diabetes, it's not a choice. What comes after a diagnosis of T1D is a new life of decision making. Your old life decisions will still exist, of course but now you've got to find some extra thought capacity for the decisions that diabetes brings.

"180!" is the joyous cry at a game of darts, when a player scores the maximum. It's also estimated to be the number of extra decisions a person with T1D makes in a single day. Let's do some easy maths:

- You're a light sleeper and you manage 6 hours of sleep per night
- For 18 hours you're awake.
- You're making, on average, 10 diabetes related decision per hour.
- A decision every 6 minutes.
- 1,260 decisions per week.
- 65,520 decisions per year.

I'm in year 36 of T1D. Go ahead and pop those numbers into your calculator. Little wonder that I've started to lose a tiny amount of head hair.

Even as I wrote those numbers, I had to double check that it's right. It seems that it is. Of course, your diabetes may vary. I know that if you're sleeping for longer and using closed loop for your insulin delivery and BG management then your decision making is likely to be much less of burden on you. You're still making decision but probably a lesser amount. If you're struggling with diabetes burnout then your decision making may be vastly reduced or even nil.

It's not just the numbers, though. It's the magnitude of the decisions made. Each day, I average 8 injections of a substance that could easily result in my death. A mis-calculation is very common. That means a corrective injection or eating/drinking something carby to stop my blood glucose from falling too low. The latter being of my immediate concern but the former can also result in life altering complications and/or a shortening of my life. Those decisions to a non-diabetic or a person recently diagnosed must seem enormous and incredibly stressful.

They are.

Of course, the majority of T1D management is simply a persistent monotony. I once described it as 99% boredom, 1% sheer terror. That's because the decisions I make are mostly around what I need to inject to cover the activities and carbohydrates in my day to day life, needle changes (and lancets!), sensor changes, ordering prescriptions, attending appointments, giving up bodily fluids into little containers and handing them strangers... you get the idea. It's not exciting, thankfully! I'm pretty pleased with the boring. The last thing I want is an exciting chronic illness which might kill me.

Boring doesn't mean easy. I do the boring to avoid the terrifying or, at least, minimise the terror. I'm still here so I guess things are going alright, right now. 

There is hope! and it's about time that I put more positivity into my blog. Technology reduces the decisions and the burden of T1D. I say that with the strongest conviction. I don't "loop" and I don't "pump" but simply using a CGM has helped to lighten my load dramatically in the last few years. It seems that pumping and looping (?) is a natural progression for me and I have no doubt that those progressions will lighten my load further. Of course, I hope for a cure but I'm realistic. I'm 44 years old and that probably won't happen in my lifetime but I do think that technology will continue to advance and make the T1D decisions for me. Perhaps 180 will only be associated with the darts, one day in the future.

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!