The Path To Pumping - Pt.8 Destination

I've spent some time thinking about a title for this blog post. Something clever, funny or cutting to get my news across usually works well. It's been a struggle because this may be the final Path To Pumping post and this little series of posts on the subject have been about the "journey" rather than the destination. Now, it seems the destination is on the horizon - you may have gathered that from my social media posts and from my replies to your messages. So, "Destination" it is.

I've also struggled to find a starting point for this blog post but it seems sensible to get straight to the appointment which has brought me back to the keyboard, today. That happened last Friday and I was allocated the last appointment slot of the clinic to afford me enough time to talk about my Diabetes, care and needs. That, I felt was a great gesture by my consultant. I'm aware of the strains that HCPs are under and to offer me unlimited time to talk meant that I felt my interests were the top priority for this appointment. With that in mind, I'm going to name the consultant in question; Dr Ian Lawrence. 

Once the introductions were over, Dr L revealed my HbA1c results - 6.7% which was .1 higher than my eA1c of December but .2 lower than my eA1c of just a few days ago. That leads me to believe my actual A1c after 90 days on a pump (and before the excess of Christmas and New Year) was likely 6.5% or less. So, great news to have my A1c improvement confirmed by the lab. And everything else? I'm still impressively tall, I've put on 8lbs, my organs are all working and my feet are still getting a 10 out of 10. All fine and dandy. However, rather predictably, my clinic blood pressure was slightly elevated so I'll be monitoring that for a week or so from home. Oh, and no thyroid blood test in a decade means I'm back for another blood draw soon.

That's the data and the basics cleared up, down to business! Pumping. Apparently, I'm well read on various things which include NICE criteria and ABCD recommendations - a point Dr L was quick to acknowledge. Fine, I guess, I mean I read stuff on the Internet from time to time but it was nice to know that different HCPs forward relevant information to each other (I've quoted those things in previous appts) and I know that conversations happen privately. I'm also fine with those conversations happening about me because to cause discussion is the first step on the ladder of change and, in this case, progress. Dr L and I spent the next 45 mins discussing my Diabetes history, my complications, long term conditions, why I decided to get to grips with my T1D, my years of burying my head in the sand and lately why I have gone rogue and switched to pumping. This was a brilliant conversation. I have never felt so interested in by any HCP. I answered honestly despite some of that honesty being painful with reminders of my own self neglect. 

Next, we moved to my current health and well being since the switch to pump therapy. I was able to detail the huge changes in my overall health as Dr L noted each item from my extensive list. This didn't feel like a "sell" and everything flowed naturally. I don't know if that's because I'm now well versed in repeating such things following conversations and emails with commissioners, advocates and even politicians as well as two previous consultations or if I was reading between the lines correctly and this consultation was aimed at facilitating pump access, rather than looking for reasons to deny, and I felt comfortable in talking to someone who was on my side.

The appointment ended at 1.40pm, we began at 12.30pm and let me clarify that, despite much evidence to the contrary on the Internet, I wasn't doing all the talking. It was a 50/50 thing... K, maybe 60/40. Dr L confirmed that my reading between the lines was right, he was going to recommend me for pump funding. Once he had announced that I was struggling to take anything else in. I THINK that I've agreed to a carb counting assessment course, a return appointment in 3 months, a crack at the London Marathon and I'm now engaged to a clinic nurse... whatever! YES! 

'YES!' is what I exclaimed in the lift as I left the building.

'YES!' is what I tweeted.

Rarely has a person left a clinic which isn't cosmetic surgery, feeling this good. I probably don't need to detail the amount of time and effort I have put into getting to this stage. My previous 7 posts on The Path To Pumping probably gives some of that away, my tweets probably give some of that away and several of you have been kind enough to ask how things are progressing over the last 6 months so, you guys are probably well aware.

I'm obviously happy as I believe this step will give me a better long term outcome as well as maintain the better QoL which I've  discovered lately. I'm happy that I was given the chance to put my case across, that reasonable discussion happened, that my experiences were valued and not dismissed because my HbA1c was good and nothing else matters. If I could show you all a recording of this consultation then I would promote it heavily across my social media as the perfect example of HCP & patient engagement. 

After shaking Dr L's hand, I thanked him and told him that was the best appointment that I've ever had. To improve the health, lives and outcomes of another human being must provide great satisfaction and, HCPs who read this, on the days you achieve that then please know how grateful your patient will likely be for your work and attention. Strive to do that for all your patients, it's why you do the job after all. 

It can be done. 

My noise will now reduce as I await my next appointments and once everything is confirmed I will take some time to reflect. That will not be the end. Following this experience, documenting the fight and gaining information and knowledge to add to my experience, I will be making myself available to others in a similar situation to me. Once my oxygen mask is on, I will help others - stay tuned for details on that, later this year. Until then, thank you ALL for your support, for sharing your similar experiences with me, for your signposting, your encouragement, your building me up, your thousands and thousands of red dot notifications, your time and money for sending me consumables, your time, money and energy for meeting me to donate those things, including Pumpy McPumpface!  - GBDoc, NIDoc and IREDoc have once again improved my life. To list you all would be impossible but I must mention one person

Dawnie. The busiest bee in the hive and a forever hero to me. The person who got me started but also someone who helps so many others without much recognition. Thank you!

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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Strange Diabetes Questions - A Diabetic Answers!

A couple of days ago, I decided to type "Diabetes" into Google. I was expecting the usual array of Ads and weight loss guides, diets, coaches and maybe a few charities. Some of that happened, of course but what caught my interest was the "People often ask" area of the search results.

Diabetes is confusing, I know. Type 1 Diabetes is still teaching me new things and I'm closing in on 4 decades with the condition. So, it's understandable that many people will turn to Google to get information. However! some of the questions that have been asked of the search engine are really very strange. Here are 10 of my favourites, some strange, some interesting, some I've been asked before. My answers follow each question and they're not necessarily 100% correct because they could be based on my experience of my Diabetes - use the comments box at the end of the page to add your own answers.

1.What does diabetes smell like?

Straight in there with a strange one. Does Diabetes smell? It's been noted that high blood glucose can cause a fruity, pear drop, odour from the mouth. High and low BG can cause excess sweating which might lead to difficulties with body odour. Diabetes itself doesn't smell. Diabetics don't smell any more than any other person although, you may pick up on a faint scent of insulin. 

2. Does bacon raise blood sugar?

Many things can raise blood sugar but for the most part carbohydrates are the culprit. Meat is usually carb-free or very low in carbohydrates so the impact on blood sugar from that is likely minimal. However! meats contain fats and proteins which can also impact upon blood sugar. This question, specific as it is, might not be all that strange. Bacon doesn't raise my BG but put some ketchup on it and place between two slices of bread and I'm going to need some insulin.

3. Can diabetics drink alcohol?

It's been known! In terms of Type 1 Diabetes, your answer can be observed in the closest bar or pub, following a Diabetes conference. Alcohol can affect blood glucose in different ways, depending on the type of drink. For me; beers and ciders and cocktails will act like a hypo treatment on my blood glucose - I will spike upwards pretty quickly. For those drinks, I will bolus for the carbs they contain and usually everything works out just fine. For spirits, neat or with a diet mixer drink, I will not bolus and I sometimes experience a drop in BG, later on. There are many things to consider with alcohol and T1D and insulin. It's important to note that a BG drop can come later on, perhaps when you're asleep if you've been drinking into the evening. Diabetics can drink alcohol but, just like foods, the affect on BG needs to be a consideration.

4. Does coffee raise blood sugar?

Black coffee is going to contain little to no carbohydrates to raise blood glucose BUT it might contain caffeine. That does raise the BG of some people with Diabetes. Personally, I don't drink black coffee but I do like a latte. Milk and sugar do contain carbohydrates and I'm going to need insulin to stop that from resulting in a BG spike. That's perfectly fine with me because I love coffee and I'll stop drinking it when they prise my mug from my cold dead hand.

5. Are all type 1 diabetics skinny?

Absolutely not. My size fluctuates and that depends on my activity levels and the accessibility of cakes. Right now, I'm great friends with Mr Kipling. The recently diagnosed or un-diagnosed might be pretty slender, "Thin" is one of the 4 Ts which are common in recognising the signs of Type 1 Diabetes. Once a diagnosis has happened, that person will likely regain weight. Diabetics can be and are every shape and size. I know many hundreds and we're all very different.

6. How can I lower my blood sugar instantly in an emergency?

Insulin. K, that's not going to be instantly and nothing will be. Insulin and certain forms of exercise can speed things up. Insulin and a hot bath or shower can activate the turbos, too. Some have injected insulin into a muscle which really speeds up a drop in BG - I don't recommend that. I'm not sure what the emergency could be, perhaps high ketone levels or DKA? In those cases you might want to be in the company of specialist HCPs, maybe get comfortable in the intensive care unit, while someone else takes control of your blood glucose.

7. How do you stop peeing when you have Diabetes?

Insulin. In regards to T1D, if you're peeing a lot then it's likely down to high blood glucose. Check your BG then take a corrective bolus to bring your BG into your desired range. Without insulin, you're not going to stop until organs stop working and you fall over. "Toilet" another one of the 4 Ts is a very common symptom of T1D. The need to pee so much is caused by your body trying to flush out the excess glucose through your urine. Get diagnosed ASAP and you'll be frequenting the bathroom as normally as a person who doesn't have Diabetes.

8. How many times do Diabetics pee?

There seems to be a theme developing. If a person has high blood glucose then they'll likely need to pee more often. Sometimes, diabetics have high blood glucose so it would seem reasonable to expect someone with T1D to need the bathroom more often than someone without T1D. A diabetic with stable(?) blood glucose shouldn't need to pee much more than any other person. A person with un-diagnosed Diabetes may need the bathroom many times throughout the day and night. 

9. Do diabetics sleep a lot?

No. Sleep loss is a common complaint of diabetics and something I've experienced to varying degrees since my diagnosis. There are many reasons for broken sleep but primarily, for me it was caused by high or low blood glucose and the need to correct or treat that. Because sleep is often lost, a diabetic might be tired more often and need to nap to catch up on those lost hours. T1D is an exhausting condition and many would love a good 8 hours from time to time.

10. Can diabetes go away?

Can it? Please! Just for a day! For Type 1 Diabetes the answer is no. All the cinnamon and keto diets in the world are not going to change the fact that you're a diabetic and you always will be, once you've been diagnosed with Type 1. Cures?! Of course, I'd love a cure. I no longer hope for one. I'm 45 years old and probably nearing the middle stages of my life in the next decade or two (hush!). A cure might come and I truly want that to happen for everyone who is diagnosed with Type 1, particularly the children. Type 2 Diabetes can be sent into remission for some people but not all. Don't bury your head in the sand and hope it'll go away if you ignore it. Diabetes requires your acceptance for you to live well with it and for YOU to HAVE it, not the other way around.

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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The Path To Pumping - Pt.7 Noise

 It's been over 3 months since the last Path To Pumping. Christmas and New Year came and went, the kindness of my peers continued and I took my foot from the throat of decision makers. We could call this a break, a recharging of the batteries, time to take stock and evaluate where everything stands. Indeed, all of those things happened and that's a good thing. Type 1 Diabetes is exhausting and the fight for access to an insulin pump really does add a lot to an already over spilling plate.

The rest hasn't really been a case of ignoring the situation of NHS pump funding refusal. I did some reading and I did some peer supporting of others who are in a similar situation to me. Here is some of that support:

This tweet

&

This tweet

It shouldn't be necessary - I keep repeating that, I know but it's true. T1Ds shouldn't need to resort to such measures in order to obtain an insulin pump. Let us remember what an insulin pump is because I think it can be confusing when seen through the filters of Instagram. This is not a glamour item, a fashion accessory, the latest must have. It's not the latest phone, piece of tech or anything to boast about. It's not an object of desire. It is a machine of necessity for many. It's a NEED and not a WANT. Cool? K...

...So! since Mid-January, I have been making contact with various people and departments. You may remember the struggle of obtaining a letter which granted permission to purchase pump consumables, last year. That struggle ended when I spoke with an Improving Care Manager at DUK who happened to be in contact with a commissioner at my CCG. The commissioner kindly spoke to someone at my Diabetes team and permission to purchase arrived a few days later. A case of not what you know but who? Maybe.

So, I tried the same avenue. This time, I have submitted all my case details directly to the commissioner with CC a professor at Diabetes Network who has a particular interest in equal access to Diabetes tech. Information sent and I await a response.

While I'm waiting! I decided it might be an idea to make contact with the Parliamentary and Health Services Ombudsman. It couldn't hurt, right? Only two hours before publishing this blog, I took a call from the Ombudsman. A delightfully friendly and understanding man explained how they can help should my route of complaint through my CCG not be successful. The call was very informative and it's nice to have ammo left in the rifle should things not progress as they should.

Parliament, ah yes! remember all those votes we were casting before the virus came to town? It seemed like every Primary school in the land was a part-time ballot box for a few years. I'm a voter! although I do not have a loyalty to a political party and I had already advised one of my peers to write to their MP (see the tweet link up above). My turn, then. Surprisingly, I made contact with my MPs office within a few days which resulted in a half hour meeting of me explaining how pump therapy works vs MDI and how things have changed for me. The result of that conversation was that a letter to support me in pump funding would be sent to Robert Mitchell, the Chief Executive at University Hospitals Leicester. I have approved the content of that letter today (it's been a busy day).

You wait 20 minutes for a bus then two come along at once... 

...Soon after that approval was sent, I was called by a member of the UHL MDT (Multi-Disciplinary Team). The tone of this conversation and use of certain terms has led me to believe things are heading in the right direction. How individuals communicate can give a lot away, that's why poker players make idle small talk at the table (Trust me, don't say too much if you're ever playing experienced players). I feel the appointment, in two weeks time, with that person, will be of a positive nature. My care has been moved to that HCP at a different clinic under UHL. 

So, there's (all) that.

The support from you all has been incredible. I've felt very emotional at some comments sent to me by complete strangers. I'm delighted that courage has been found to challenge and push for change. 

I'm still a Diabetic, by the way. Still trying to get by each day and managing pretty nicely on the donated pump attached to my stomach. Better than ever, actually and I want to continue this level of T1D management or better for the remainder of my years. It seems that many of you think you could benefit from insulin pump therapy. Perhaps you won't need to go through as much as I have to get there. If you do, crank it up to 11.

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

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High Blood Glucose - The Feels & Fears

I think we talk about blood glucose a lot. Of course we do, those numbers play a large role in our lives. They can dictate how our day will go, if we'll be sleeping that night, if we're grouchy, moody, exhausted, worried, in an intensive care unit, an ambulance or sat on the kitchen floor, surrounded by wrappers and juice boxes. They can (and often do) dictate how we are treated in the clinic, too. Modern thinking HCPs may see the numbers for what they really are - data and use that data as a way to maintain or improve the health of the Diabetic. Others might see the numbers as an easy way to form a judgement of the Diabetic, of being "too..." high? low? disengaged? Take your pick from those and many others.

I'm not writing about judgement or stigma, today. The blood glucose in the photo above is one of mine and it's a little high for me. So, because I'm writing about high BGs I thought it would be useful and authentic to show one of my high readings.

13.7 is a number which is in that area of "Hmmmm, I'm not feeling great. I'm not sick but something is wrong" for me. Do you have a blood glucose area like that? The number for this area has reduced in the last 5 years or so. It used to be the high teens, maybe twenties. Now that my BG management has improved, my feels have changed at different levels. Hypo symptoms are all but gone but the hyper symptoms are far stronger, far sooner. 

A week ago, I managed to detach my pump tubing while I slept. I woke on 21 mmol/l and I can confirm that numbers in that vicinity now feel absolutely dreadful. Once I'd recovered from the shock of such a high number, I began to sweat profusely - so much that it felt like a hypo symptom. Treating it as such would've been disastrous. I also began to feel hungry, not long after correcting the high. Twitter users explained why that might be - My body didn't have the insulin on board to convert food into energy. I guess that explains why many newly diagnosed often complain about feeling so hungry all the time until they start getting shots of insulin. The hunger was combined with a terrible headache and a feeling of slugishness which lasted all day. All that from 3 or 4 hours of no insulin, following an accidental tube yanking. 

Hypers feel terrible and I'm extremely lucky to have never been admitted to hospital with DKA because of one. However, I do have a history of not giving Diabetes enough attention for a lot of my life. That lack of attention undoubtedly played a part in me developing retinopathy in my 30s and as a result I live with the consequences today, in my mid 40s. 

The fear of high blood glucose is very much a real thing for me, as you might imagine. I'd like to avoid further T1D related complications and live a good, long, life into old age. The fear is somewhat of a driver as is the experience of visual impairment in my 30s. 

What can I do to avoid things going wrong again? The past has been and I cannot alter my choices from decades ago. I've accepted my mistakes and talk about them openly because it might help others to tread a safer path. I can only influence the now and the future. The now is making the most use of the tools that I have; a CGM and an insulin pump. I think I'm doing alright! I witter on about them through my social media all the time, take a look and form your own judgement. I'm doing alright but I can do better in the future, however. To achieve better I need the support of the NHS. I need NHS funding for a pump for the rest of my life or until technology & medicine change to a different way of treating T1D. Beyond that, I need NHS support in my use of closed-loop to manage my condition. I believe that's as good as things will get for me with the technology and insulins we have right now. It might be enough for me to live to a ripe old age without further complications. 

The HCP who gives that the go-ahead can sleep soundly, knowing they went to work once and made a significant difference to someone else's life... maybe millions of lives, now and in the future. This will happen and I continue to push in different directions to make it happen soon. 

Being a "patient patient" is usually a great idea because it shows an understanding for how things work, HCP red-tape, etc. I know that. However, such a narrative is difficult to accept if it comes from a person living without complications or the prospect of any, a person who does not  have T1D or a person who does have T1D but is very happy with their current regime. Diabetes and the urgency of the technology to treat it really does vary.

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

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