Monday, November 15, 2021
Due Diligence
Friday, October 29, 2021
Peer Judgement
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.
Tuesday, October 26, 2021
The Path To Pumping - Pt.6 Somebody Like Me
Sunday, October 17, 2021
Diabetes & Pain
Friday, October 8, 2021
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.
Wednesday, September 22, 2021
The Path To Pumping - Pt.4 The First Month and Q&A
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.
Thursday, September 2, 2021
The Path To Pumping - Pt.3 The First Week
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.