The Path To Pumping - Pt.6 Somebody Like Me

You may have heard from De La Soul that 3 is the magic number. Not in Type 1 Diabetes circles if you're hoping for NHS support for pump therapy.

A lot has happened since the last The Path To Pumping blog. I think it's important to recognise the great things first and, as usual, the great comes from the community of GBDoc, NIDoc and IREDoc on Twitter. I've reached the stage of forgetting who has sent what, helped in which way or just been there to support my words. It is truly remarkable to me, to have such generosity sent to my door or handed to me in person. I try to be gracious to each person and convey my profound thanks for their help and each person has simply seen their actions as nothing, not a problem, some citing that I do a lot to help others when I really just do what I think is the right thing - and I really enjoy it! I've written many tweets and blogs containing "Thank yous" now and I'm running short of words. Thank you! to everyone who has helped me to this point. I have enough pump consumables to keep me going until December, perhaps longer if I reuse some cartridges.

Peers, as you may have realised, are happy to support what I'm doing. They live the condition 24/7 and they relate and feel my words. They recognise the importance of reduced burden, better sleep, no dawn phenomenon, lower anxiety, more head space... and on the list of things goes. What's not on that list? Numbers.

Trigger warning: Self harm

Ah, yes. The magic numbers on which we as Type 1 Diabetics are judged. Still, albeit with less of a judgemental tone (we can put that to the test in due course). Because page 1 of the "Type 1 Diabetes for Doctors" book is all about HbA1c.

For Abbott, the Flash Mob, the Libre Lovers, during a Webinar the very well qualified have noted that an A1c of 6.5% is optimal regardless of MDI or pump therapy.

The nice folk at NICE believe that an A1c of 8.5% or higher should mean a mandatory offering of pump therapy through the NHS.

Boffins at a Swedish university believe the "Goldilocks zone" for A1c is 6.5 - 6.9% regardless of MDI or pump therapy.

Then there are us; the 7% - 8.4% gang. The cool kids, perhaps? walking the tightrope over a drop into the chasm of complications, hoping to stay on the line and not drop into the abyss. And we're told "you're doing great" if we ask about switching to a pump (remember positive rejection?)  and to "keep at it". Yet, there they are - The Abbott Webinar professor, the Swedish boffins, talking about A1cs beginning with 6 and the mind wonders just how great are we doing in the mid 7s? What help can we get? You're not switching to pump therapy, not in my area, that's for sure! You'll be working with the tools that MDI can give to you, assuming you have any capacity left to do that work. Or, fingers crossed! and you carry on as usual with the "doing great".

Complication risks grow exponentially over 8% HbA1c, with each increase in 1% HbA1c. I'm sorry if you're nursing an 8%+ right now. You're not guaranteed anything! So, keeping things under 8% is a great idea, right?

Right! Deep breath. So:

- We need to keep it under 8% to reduce those complication risks

- Under 7% but not under 6.5% if you subscribe to the Swedish data.

- 6.5% if you're digging Libre Webinars

There seems to be murky water, here. For such a heavy clinical reliance on HbA1c, the 7% - 8.4% folk don't seem to be brought into the conversation a great deal. Is the risk of complications so dramatically lower at 8.4% vs 8.5% (NICE for pumping) or 7.9% vs 8%? My own blood glucose data tells me that things rarely travel in a straight line. I'm sure there is a nice, curvy, A1c vs Complications graph, somewhere.

It's difficult to escape the numbers if you're hoping to start pumping through the NHS. I get that. I really do get that individuals who are struggling to get their A1c under 8.5% need more urgent care than somebody like me, who floats around the 6% and 7% areas.

Somebody like me. Somebody who used to have higher A1c numbers, somebody who has suffered eye complications, somebody who has engaged and got to grip with his Diabetes, somebody who (in recent times) has noticed his A1c creeping up, his TIR dropping, his burden increasing, his near-avoidance of injecting because he's just so damn tired of the endless process seven, eight, nine, ten times a day. Somebody who knows his own body and own mind and recognises the dangers of where things are heading.

Somebody like me, who isn't in need of urgent care but is in need of care because somebody like me really doesn't want to go through eye complications hell again. A hell which I've only partly spoken about because my peers have enough to worry about. I promise, you don't need all those details. 

Could the risk be worth it? I have enough tools and data to stop pumping, today and begin what would in effect be self harming myself by purposefully running high enough to achieve an A1c of 8.5%. Then I'll get the care that I know that I need. That care is NHS supported pump therapy. Of course, there is another criteria for pump therapy from NICE; hypos. The same thing could be achieved by having a couple of severe hypos, perhaps resulting in hospitalisation. The risks of trying a controlled hypo are far more immediate but probably equally as silly as trying to run high for 90 days. Don't do it. 

Where next? There are options, none of which involve manipulating my Diabetes in the two very silly ways above. I could press harder and talk to people in more senior roles but is that the Joe Bloggs Diabetic route? Probably not. Joe would likely seek the advocacy of charities. How much weight their influence carries is debatable but without trying who knows? Another option could be to seek care from a different area. I live close to the border of different counties and different CCGs. Perhaps an area many miles away would be more sympathetic to my needs. I'm chewing over those options as I type this blog. There is no immediate hurry to decide what to do but, as always, your thoughts are greatly appreciated. Leave them below or tweet me!

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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Diabetes & Pain

Apologies for the rather dramatic image. Imagery which represents pain is not an easy thing to find unless a scrunched up face is your go-to. It has been a pain to find a suitable photo. Not as much of a pain as Diabetes. 

If you read or publish your own stuff on the Internet, perhaps via social media, then you've probably engaged with somebody who has had an "ouch" moment. You've probably experienced several, yourself. That's life, right? We experience pain because our brain is telling us something is wrong and to warn us that we're possibly damaging ourselves. We avoid pain because it's unpleasant. Yet with Diabetes, specifically Type 1 in my case, pain appears to be an acceptable part of the day to day management of the condition, at least in it's physical sense.

I've been thinking about some of the pain which I've experienced from near 37 years of T1D.

Those first few days were brutal, as an 8 year old boy. The guillotine-style finger pricker might seem like a horrendous looking thing to use, these days but when compared to a manual prick from a ward nurse it was very welcomed! The finger pricks became the first thing that I became conditioned to. They still hurt of course and they still hurt today! But something doesn't really register as a pain, eventually. Perhaps the brain knows what's coming and it's all; 'Okay cool, another finger prick, have a drop of blood.' I think finger pricks, today are relatively low on the pain threshold. Pricking devices have advanced, we can pre-determine the depth of the prick (stop laughing) and lancets seem very good compared to those of the mid 1980s - assuming you change them. You do change them, right? 

In the early years, needle tech and information wasn't great. I remember those syringe needles being pretty big and getting used several times. Little wonder that my injection sites were frequently bruised. I remember it took 3 or 4 days before I no longer needed a team of HCPs to hold me down for my twice daily jabs. Now, of course, injection technique is a thing. Needle length is a thing and single use is definitely a thing. Injections still hurt but far less than the early days. I think the advancements in injection tech and knowledge have reduced the pain in that area. 

Recently, I've started pumping (you may have noticed) and that means a different type of pain; cannula insertion. I prefer using an insertion device, some prefer manual insertion. Either way, you're going to insert a needle and cannula into you and withdraw the needle while leaving the cannula behind so you can pump insulin in. I've only ever done this to myself, no HCP has helped or advised, although for the first two insertions I had the help and patience of a friend on Zoom. I found manual insertion to be more painful than using an insertion device. That might be because I'm slow and deliberate rather than fast and zappy. It's generally the same pain level as a syringe or insulin pen needle injection but I have found the after sting lasts for a little longer. In addition, boluses can sometimes feel "a bit stingy" although I've found that to be site dependent. 

Ah, technology. A wonderful thing. It still hurts. I'm currently using GlucoMen Day CGM and that is the least painful CGM that I've used to date. No guide needle helps to minimise the skin trauma. When it's in, it's in. It probably hurts more to remove the sensor because the adhesive keeps it so firmly attached.

Libre? Possibly the more painful of the glucose devices, for me. Although, again, that is somewhat site dependent. I have found the upper thighs hurt the least and that is the same for every Diabetes tech device which I've inserted there. Have you got a favourite site?

Adhesive? My advice is to choose a not-very-hairy site on your body. Some of that stuff will give you a tiny area of your body a free waxing as a part of the deal when you remove the device. Ouch.

T1D means that the possibly of Diabetes related complications can be a thing in our lives. I'm going to talk about the one which has impacted upon me. I recognise that there are many others and you'll all have your own experiences if complications have visited you. 

Diabetic Retinopathy wasn't a very painful experience. Changes in the eyes and even bleeds don't tend to be painful. The treatment and additional complications have been. Laser treatment in clinic was uncomfortable with moments of moderate, stinging, pain but if I had to go through that again it wouldn't unduly worry me in regards to how much it's going to hurt. Deep laser, done in theatre, was more uncomfortable. That involved an injection to numb the eye and a period of  soreness for several days. I hope that you'll never experience those things but if you do then please just do it. It's really not awful and your eyesight is worth it and more.

Speaking of more. A vitrectomy?... or two. That's a more invasive procedure and you'll need a GA rather than a local because you really don't want to be awake for that. Post-surgery resulted in a headache and eye pain which grew in intensity. Eventually, drops and Tramadol calmed things down enough for me to stop praying for the merciful release of death. What followed was 2 weeks of soreness and posturing. Posturing is not fun. It involves being face down for 50 minutes of every hour. EVERY hour. to protect the retina. So, 4 weeks of my life, I spent looking at the floor, pillow, sofa, etc and that is no party for your back and neck. And that's how Diabetic Retinopathy gave me a bad back. 

There is more and I've saved the best/worst until last. Ocular Hypertension. The gift of retinopathy kept giving some 3 years after my last surgery. It started with a very mild, niggly, headache. I took a couple of Ibuprofen and tried to carry on with my day. Within a few hours I was unable to look at a screen and beginning to worry. By the early evening I was already in bed and despite trying different painkillers, nothing was working. At that stage, I began to vomit from the pain and the debate of when or if to go to hospital was had. There is an emergency eye dept right besides my usual eye clinic. They opened at 8am and I decided that it would be better to present there, rather than general A&E and potentially being admitted. I was sure this was an eye related issue and nothing more sinister and that spending the night on my hands and knees, because that was the most comfortable position, and crying quietly was best done in privacy in my own home.

Eye pressure is "scored" just like your blood glucose. A normal range is something in the teens. My right eye was 14. My left eye, my agonising eye, was 48. I was lucky to present at Eye Casualty at this time as one of the nicest, most experienced eye surgeons was in the building. I will never forget the compassion and clear explanation given to me by Mr Kowatowski. Within 30 minutes I was on IV drugs which began to lower the pressure in my eye. The relief was tremendous and from that and probably not having any sleep for 24 hours, not to mention the worry about my sight, I had another little weep. 

My words probably do not carry enough weight for the pain which I felt from the high pressure in my eye. It is by far, without a shadow of a doubt, the single most painful thing I've ever experienced. I've had a broken rib, twisted ankles and a biopsy on my tongue. None of those are in the same league as Ocular Hypertension. So, when you see me encouraging my peers to attend their eye screening appointments, it is for good reason.

Pain relief is something which affects us, as people with T1D, too. Tramadol is a strong pain killer but it has been noted to cause hypos! Co-codamol, which you might be prescribed for a frozen shoulder (I was) is a strong one, too and although it never caused me any blood glucose issues, it was really difficult to wake up of a morning. Naproxen gets commonly prescribed but that can cause stomach issues. And then, of course, Paracetamol and Ibuprofen - they might work for mild pain and don't appear to have any immediate effects on my Diabetes.

Physical pain as a result of Type 1 Diabetes appears to be inevitable, from the very common, mildest and briefest of stings right up to the insanity inducing agony - which I truly hope is a rarity.

Mental pain is another issue, a very important issue, which has only recently begun to be recognised amongst HCPs in Diabetes. I'll blog about that on another day. Until then, tell me about your physical Diabetes pain. Leave a comment below or catch me on Twitter.

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

The Path To Pumping - Pt.5 Permission

 I think that it's pretty safe to say that you do not get to live a life without seeking permission to do something at some stage. Perhaps permissions are sought more when we were younger, as we learn rights and wrongs, then we might seek permissions more as we start employment - reducing as we mature, move up the employment ladder. becoming parents, financially independent and ultimately adopting the "with age comes wisdom" stance as we reach seniority. Perhaps. Of course, life moves in different directions for us all and a host of different things will affect what permissions you seek and from whom. So, that's a generalisation.

Diabetes doesn't escape permissions. IF we do certain things then other things are possible or, at least, safer. If you're running a high blood glucose and you're hungry then you'd probably give yourself permission to only eat that slab of cake if you inject or pump some insulin into your body. Probably. 

Of course, we can and do by-pass permissions in life and Diabetes because we're wild and just won't be told (kidding) or we know enough at that stage in life and in OUR Diabetes to no longer need the go ahead from another person or a group of people. We know the right answer and sometimes we just grab the bull by the horns and ride that bovine wave. 

By now, you've realised where this blog is heading. Since writing my Path To Pumping blogs, there has been lots of discussion on Twitter, WhatsApp and even in my Inbox around the subject of pumping and mostly how to get started with pumping. As an NHS patient, it boils down to permission. 

Many who have expressed an interest in pumping to me have queried where to start. It's never been an option, they didn't like the idea until recently, they didn't realise they could reduce their burden, they couldn't afford it! The list is surprisingly long. I've tried to encourage each to start a conversation with their Consultant. It could be that you're eligible under the current NICE guidelines and the NHS are obliged to start you on pump therapy. In that case, great. You're good to go and good luck! For the rest of us? We're going to need some permission.

Your Consultant may tell you that you're doing "too well" and that you don't need a pump. They might be right! But if you're going to dramatically change your insulin therapy, learn something new and quite scary & be brave enough to speak up about it in an often intimidating situation then they're probably wrong. They're probably using this positive refusal technique because your HbA1c is under 8.5%. Clever, isn't it? the old positive refusal. Did you ever end a relationship with "It's not your fault, you're great, it's me, you can do better..." to soften the blow. Maybe you've had a positive refusal for pump funding and it was so good that you took to social media because your HCP told you how brilliantly you were doing? Maybe that's just me.

So, what happens after you're refused? I mean, the nice Consultant was really kind and complimentary. Perhaps you should suck it up. Until you can't suck it up any more. Hurray! You've reached Burnout level. This is where things get worse for you until you eventually reach that 8.5% A1c and the Consultant is less complimentary. By that stage, you may not be in the right frame of mind to move to pump therapy. You might not be in the right frame of mind to do very much in regards to Diabetes. Then you might need psychological support, maybe counselling, and a pump, which you might or might not use correctly because your mind is a frazzled, deep fried, lump of lard at that stage. Things could get expensive for the NHS from then on in and become a worry for you and your long term outcome. 

I'm sorry if that last paragraph reads a little gloomy. Imagine being my Consultant!? 

Let's just touch on that 8.5% thing a little more then I'll let you go and demand new things from your own D team:

That is a criteria you must meet for a no questions asked agreement to start pumping (alongside having no hypo awareness and hopefully not dying from a hypo hospital admission). If you don't meet it and you're sure that pump therapy is for you then look up the ABCD recommendations for pump therapy. Do you meet any of those? Dawn phenomenon? A splash of hypo fear, perhaps? How about some other QoL issues? If they apply to you or anything else which is a solid reason for you to switch to pump therapy then "No" is not an answer to accept when you start the conversation. You have options, there is help in exploring those options.

Sometimes you'll wait a while for permission. A patient patient is a good thing. If you do find that your wait seems to be a little long then do drop me a message. Everything can be hurried along and even a Joe Bloggs Diabetic, like me can reach far beyond the initial gatekeeper. 

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

The Path To Pumping - Pt.4 The First Month and Q&A

 

Time flies when you're having fun, right? A month has passed with me pumping and it's been an interesting, sometimes fun, sometimes frustrating time. 'Frustrating!?' I hear you exclaim. Yes, in parts but maybe not the parts that you're imagining. Let's begin.

I'll start with the news of my pump funding through the NHS...

...Hello darkness my old friend. 

That's probably a bit harsh but through me you get honesty, you get the good, the bad and the sad cats.

The good - Through arranging my DAFNE course (to be done remotely because it's 2021) the extremely helpful nurse (name forgotten, sorry) who took my registration promised to chase up a couple of things for me. Firstly, my appointment with the pump team. It's probably not going to be a team, I know exactly who it'll be but fingers crossed for an audience of cross-examiners. 

The bad, kind of - Secondly, self funding consumables. I need permission to BUY pump consumables from Roche. That permission must come via a letter signed off by my consultant. Cool, OK. It was to be done 22 days before this blog was published. I've politely chased it. Roche have politely chased it. Now, it seems the DAFNE nurse is going to chase it. This letter is harder to catch than Usain Bolt. He's not a runner any more, is he? Insert something or somebody fast in his place.

Frustrating? You're getting the idea, I hope.

But! I'm staying cool and calm about it all. I realise that I've dropped the news of my management of my T1D on my team's desk out of the blue, that I'm not the only patient with T1D who needs some attention. So, I'm not trying to be too demanding. Of course, once my generously donated consumables begin to run low then noise will happen. I'm hopeful of never getting to that stage and, as a Joe Bloggs Diabetic, I'll do what I think many would and I'll stare hopefully at my letterbox for weeks. So, that's where things stand with the funding. 

How about some truly good news? The pump has been a revelation. You may have already gathered that from my Twitter gushings. It's difficult to really convey just how much my life has changed from this change to pump therapy. If it's happened to you then you might get what I'm struggling to put into words. I could write several thousand words on situations and experiences which relate to me and pumping. You'd fall asleep or close the window before the end and I'm not about writing War and Peace blogs. So, relax. Let's try something new! I asked Twitter for some questions in relation to my pumping and I'm going to publish each one and answer those below.

David asked "You know we all want to know what goes on with sex if you wear a pump, right?"

Straight in there with the grown up stuff. I think you've got options, that's options and not positions, when it comes to sex and pumping. The easiest thing would be to suspend the pump and take it out of the cannula (keep the cannula in) and when you're done just plug it in again and unsuspend. There might be added benefits to doing that by not going hypo during your hubba hubba time, alongside not getting caught up in tubing and having a lump of plastic machinery flying around (stop giggling, at the back). A negative could be that you're getting no insulin and how long before you're hyper? My own pump buzzes and beeps every 60 seconds when suspended. If you find that you're being timed and it's distracting then hide the pump in another room or turn up the volume on your Barry White's Greatest Hits.

Adam asked "Any issues with pump placement during exercise? That and the sweat damaging the pump are two concerns I have. Also, how long would you say your teething problems were before you felt you had it under control?"

My pump appears to be very sturdy but you can get cases for more protection from moisture and general knocks and bumps. I think pumping and exercise is a question of finding where to put the pump to keep it secure and deciding whether to take it off all together for that period of time. My first two days of pumping were far more "rocky" than they are now. I'm so lucky to have lots of pumping friends, including some who have used the pump that I have. They've been amazing in taking my panicked calls over air bubbles, occlusions, insertions, etc. After a few set changes and basal tweaks, things seemed very smooth and predictable. 

Gillian asked "How much of a difference are you finding with being able to use different bolus patterns as compared to an single or split bolus?" 

I'm still learning but wow! game changing stuff. I've grown more confident in the pump to begin using different features and now it's just a question of getting boluses right for the difficult meals... I doubt that'll ever really happen but perhaps I can stop those overnight spikes from pizza dinners, at least.

Natalie Ann asked "Question about hypo awareness: has this changed for you? Look forward to the blog"

Thanks Natalie Ann. Sadly, no. At least not during the very moderate hypos which I've had in the last month (they're so brief that I'm showing 0% lows on my CGM). If my hypo awareness does return to the old levels then I'd be delighted. Just to get a little sweaty at 4mmol would be ace!

BrittanyJo asked "Hoping to get my son approved for one at his upcoming appointment this week. do you use cgm as well?"

Good luck with the approval for your son! I do use a CGM called GlucoMen Day. It isn't part of the pump and they don't "talk" to each other so, no Looping with this set up. However, it's an invaluable piece of technology for watching BG and reacting to problems. To set up with my pump without the aid of a CGM would've been much harder work.

And two private messages:

How are you sleeping with the pump?

Brilliantly in that I'm able to have a long lie in and not worry about my IOB from pens running out at 7am. Less concerns make for a calmer mind and better sleep. Physically, I sleep in shorts with pockets and it lives in there until I wake up.

How did you find pumping while wearing a suit at that wedding?

Pretty straightforward stuff. The suit jacket hid a very small area of tubing which I ran from a lower shirt button hole to the pump in my pocket.

How do you like the Q&A stuff? I'm always available to answer questions or to shoot the breeze with on Twitter @DiabeticDadUK or you can leave comments below. 

Oh, the Employee of the Month picture? The same as every other month; Me! Although my pump has put in a helluva shift. 

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

The Path To Pumping - Pt.3 The First Week

Whoa! What a first week it's been with my pump. Time has flown by and so much has happened, even progressed, since the last blog. Let's get into it.

Firstly, huge love and thanks to all my friends and peers within #GBDoc. I have been inundated with support and advice from seasoned pumpers, loopers, HCPs and curious MDIers. Sometimes, I feel there is a hoard of big hearted people who have my back and who can relate. It really does swell my heart and I doubt that I could ever repay such kindness and support.

The first week! So, no (or very minimal) insulin on board, on Wednesday morning I interrupted @Julesbhrh from celebrating her birthday month to supervise my first cannula insertion and to get started with pumping. Doing that over a video call is not easy! especially without a COB (coffee on board) and with a rapidly increasing blood glucose level. It took a while, as most things do in your 40s, but we got there with my CGM reading 17.4 mmol/l. Icky, right? Previously, a Novorapid pen correction would take several thirsty hours to bring me back from the brink. Not so with Fiasp in the pump. After 30 mins I was nudging the happy zone and I could even plan my lunch and pre-bolus. What a great start!

 The first 3 days proved to be a continuous stream of surprise and delight. Fiasp was working beautifully and is extraordinarily fast, I had begun to adjust to sleeping with a pump attached, my TIR rocketed, I wasn't overwhelmed at all, no injection fatigue, fasting BG numbers leading me to question if I'd been cured by the Cinnamon Fairy, overnight. Apart from a kinked cannula, which taught me that when no insulin is going in I will become hyper very quickly, it's all been smooth sailing.

Can I brag? Just a quick brag. Between Saturday evening and Tuesday afternoon, my TIR was 100%. What in the name of Banting's Balls! I've had two 24hr TIRs in 4 years. That's almost 3 days in a row. Yeah, it's gone well. I've since managed a full set change without supervision and I've grown confident and comfortable with the pump.

Of course, it can't end there. I'm not in this for a quickie and then back to pens. No way, Amigo. That means I'm going to need consumables and Fiasp on prescription. August, it seems, is a popular time of the year for annual leave within the NHS and I'd chosen a Bank Holiday to reach out to my HCPs. To their credit, I was replied to on the Tuesday morning by email and had a telephone call in the afternoon. Outstanding stuff. See! HCPs from UHL, I can be kind and give credit where it's due. No need for patronising DMs or to block me or unfollow me. There is nothing to fear. Meow! 

I digress, what did the HCPs say about me going it alone? "We've never had this before" made me happy because who wants to go to work and deal with the same thing each day? A really good discussion with my Consultant and DSN lasted for around 30 minutes. The great news is that Fiasp is happening right away. Beyond that, I have been referred to the Pump Team and a certain Professor who some of you will know from Twitter. No, Partha relax, it's not you. At that referral, I hope to continue the good, honest, dialogue with that team and work towards full pump funding.

While I'm waiting for that referral to arrive, I'm hunting for consumables and I've opened an account with Roche and Accu-Chek. I've been given permission to buy my own consumables, lucky me. It appears that the items I need will cost around £120 per month, that is excluding VAT. If I want to use an insertion device for my cannulas then that's another £25. Yikes. Hi Americans! I can relate... a bit. Some kind folk have sent some supplies to me for which I am hugely grateful. I'm looking at you @NanaNeylin and of course the world's hardest working person @Moodwife

And that's where things stand, today. I'm delighted to be pumping, amazed by the numbers, hopeful that the pump team will agree that funding makes sense and most of all I'm determined. This will happen. 

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

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!

BUY DIABETIC DAD A COFFEE HERE

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!

BUY DIABETIC DAD A COFFEE HERE