If you were affected by any of the words in this blog post, by diabetes, complications, or any aspect of your life today, tomorrow or any day then please seek out support.
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Acceptance
Tuesday, October 24, 2023
I Was Feeling Complicated...
Wednesday, July 26, 2023
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Sunday, April 2, 2023
Diabetes and Blood Pressure
You don't need to have diabetes to know that blood pressure is a thing, an important thing! High, low and somewhere in between - you've most likely had your blood pressure checked at some stage and learned of the results pretty quickly. Me too! I submit to an arm squeezing at every appointment, In fact, I'm pretty sure that I had my BP checked at my pump set up appointment because... I don't know why. It just happened along with my height and weight. Glad to know I'm not too fat or short for pump funding! Phew! There is probably a NICE criteria for that.
BP at appointments, yes! let's focus on that one. I'm one of those "White Coat Syndrome" types. I know that's not the official name for it. Language Matters probably covers it under "Person with anxiety of medical professionals wearing light coloured lab coats" However you describe it, I have it. I think it stems from a real fear of attending my diabetes reviews as a child. If I wasn't passing out from the blood tests, I was being told off about my control, threatened with trips to the amputation ward or working extra hard on my blood glucose diary fiction for the last 90 days. It wasn't a great experience and it stayed that way for a long time.
Medical appointments, I suspect, are not designed to be fun. Today, they're less stressful but they're still not a day out with friends for a lovely lunch and a drink or two. They usually involve losing some of my blood and urine to a stranger and the fear of some terrible news lurks in the back of my mind at each visit to a waiting room... which is always too warm and always contains some absolute knob, coughing up their infectious disease in my face. I'm going off on a tangent. You get my drift, I'm sure.
Those settings appear to be unwittingly designed to increase our anxiety. For me, that appears to translate into elevated blood pressure, almost every time without fail. I've left many appointments with a rented BP machine tucked under my arm for home readings. On at least one occasion I took 24 hours worth of readings. More commonly, I'm asked to provide 7 days worth of home results. And I do! Of course I do. And they're always normal / within a healthy range or near to it, such as this one from last night:
That's reassuring, of course! I have enough to contend with without hypertension coming out to play. However, it's becoming a little tiresome to be told that my BP is "a bit high" in clinic when it's the clinic setting causing my numbers to nudge up. As is my want, I vented about this on Twitter only a week or two ago. David rightly noted that not only do they check for BP on these machines, they also check for irregular heart beats. I'm pretty sure that my home monitor (above) doesn't offer that function. I'm good with heart checks. We're often told that T1D can increase the chances of heart disease so, it makes great sense to have that particular organ checked out. Blood pressure can give our kidneys something to think about, too on top of the work T1D gives to them.
BP in clinic, though? I'm not alright with that one right now. I'll be providing my own readings and requesting that any taken during a heart check are ignored and not noted. That's going to be an interesting chat with that HCP, isn't it?!
We check our blood glucose a lot through CGMs and finger pricks. We try to keep it in a healthy range because that reduces our chances of diabetes related complications. Blood pressure is very important for many aspects of our health, too. I believe that frequent monitoring of BP should be seen as an essential aspect of T1D care but that frequent monitoring should be done in our usual day to day environments; home and work. Unusual settings, such as diabetes review appointments, are not places to obtain reliable blood pressure readings.
Blood pressure monitors are relatively cheap these days. It seems unlikely that the NHS would fund BP monitors for all diabetics so, if you can afford to pick one up, I do recommend getting one for a useful and accurate picture of your blood pressure.
And relax!
Wednesday, January 4, 2023
Diabetes Is Work
Sunday, January 1, 2023
Taking Diabetes Advice
Wednesday, December 28, 2022
Oversharing in Diabetes
On the Twitter, I tweeted this about Sharing T1D yesterday. I'm fine with others liking or not liking to share their diabetes information. Health, including diabetes, is a very personal subject and often subjected to stigmatising remarks, bullying and sometimes just generally unhelpful (and often unsolicited) advice. Little wonder that some prefer to not share anything in regards to their own diabetes with the prospect of such negativity. I really understand that, I hid my T1D for a long time because I didn't want to hear the advice or the patronising encouragement or have to explain what it was, what type, do I have to inject... yadda, yadda. It was just so much easier to hide it for the majority of the time and social media is such an easy place to hide. It's easy to have lurker accounts on pretty much every platform, easy to sit back and read rather than joining in the conversations. Hiding and not sharing is a very safe place to be.
There is a safety aspect to consider when sharing, too. Who knows who lurks behind the keyboards of others and what their intentions might be? Only last summer, I was made aware of a prolonged period of stalking and accusational tweets aimed towards me from an Australian advocate account which I'd blocked some 18 months beforehand. Disturbing stuff which took me away from Twitter for a few days to consider my options. Thankfully, that episode came to an end once I'd brought it to public attention but it was shocking and upsetting. It's very easy to upset somebody on social media without trying and those we upset well, they might not have enough sandwiches for a picnic. How do we share but stay safe? There is no simple answer apart from avoid offering personal details to people who you don't know. Sometimes, even that might not be enough if a determined person wants to track you down, find your employer, etc.
So, is it worth it? Yes! I think that offering your story, your experiences, your info can be really helpful to your peers. I imagine that you've read something in regards to diabetes which you've found useful in how you manage your own diabetes. Maybe those words came from somebody living with the same type of diabetes, a person who was willing to share their experiences and information. That's why you should consider sharing your experiences and information! It is the cheapest and easiest way to "pay it forward". Of course, don't make it easy for the sandwich deprived to locate you in person, avoid publicising your phone number and sort code and if an unpleasant encounter does occur then my best advice is to ignore it. You might choose to use the mute function on your chosen platform rather than the block button to minimise the oxygen given to the angry fires. To not give oxygen to the fire has been a long term piece of advice of mine but I'm still guilty of doing the opposite from time to time. I'm only human and the urge to vent can be overwhelming in the face of serious sandwich deprivation. I'll try harder in 2023.
What about the feelings of others when you share? Perhaps you've had a great HbA1c, your best ever, and you hit your socials to spread the news and celebrate your good day. I suspect you'll mostly be met with encouragement and good cheer from your friends and peers. However, you may also be met with words which dissuade you from sharing such info because others might be having a tough time with their A1c or general diabetes management. I have a lot of sympathy for anybody who is struggling with their diabetes, I try to make myself available to anybody who needs to talk through groups, mentoring or just a simple message exchange but the struggles of others should never stop you talking about your own diabetes if you've had a good day or a good result. This condition is relentless and despite the tech advances it will continue to be so for the foreseeable. Little victories need to be celebrated, I find them to be morale boosting, I feel more in control of my diabetes and, when others share their wins, I feel encouraged by them and pleased for my peers.
To not share results or information through fear of upsetting others is a backwards step in peer support. If we were to stop sharing our lived experiences, what worked, what didn't, what hurts, what itches, a great A1c, a dodgy TIR, etc then how do we learn about advances in tech and medicine and care and solutions? Our diabetes team? Yeah - I'm not sure that the closed looping crowd would agree. I wouldn't agree, either. Without reading the experiences of my peers, I wouldn't have discovered Flash, CGM and insulin pump therapy as soon as I did - three things that massively improved my diabetes burden and numbers.
If you do feel negatively about the shared information or experiences of others then I think it might be worthwhile to seek support from different areas, especially if such sharing is becoming overwhelming to you and making your own diabetes burden even worse.
I am pro-sharing when it comes to diabetes. It is the foundation of peer support, in my opinion and there are very few dangers from tweeting your last A1c result. Oversharing is where the dangers lie, keep your private info protected and remember that fire and oxygen thing.
Thursday, December 22, 2022
Diabetic Christmas
Saturday, December 17, 2022
38
Friday, November 25, 2022
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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!
Sunday, November 13, 2022
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Sunday, October 16, 2022
Was It The Cinnamon?!
I've recently fallen into a YouTube "rabbit hole". Having watched someone survive on £1 for an entire day, the same chap then went on to describe his favourite "cheap" meals. One of those meals was a fried banana sandwich - made from bread which he baked himself. It looked pretty good and, because I'm not surviving on £1 per day, I added some sugar and cinnamon to my own fried banana sandwich. It was really good! The cinnamon really brought it to life and I've made the same sandwich several times, since.
Cinnamon! Ah, yes the frequently touted and often mocked cure for diabetes! Of course, it won't cure your diabetes and that's why it's often mocked but it does taste pretty good on various things. Strange, though, that after recently eating a lot more cinnamon (I really like a fried banana sandwich) I've finally been able to stop taking medication which I've been on for around 10 years.
I've had to take eye drops since developing retinopathy and various other eye nasties in 2010. The drops have changed, based on my changing condition, a couple of times. The latest batch began in 2014 and they were prescribed to control pressure and irritation. Very successful they were, too! After my 2014 surgery, I have been stable in the peepers. I thought that was down to a combination of better T1D management and my 2 x 2 eye drops per day. I might be right in regards to the T1D management but it seems that things have changed in the eyes dept.
Earlier this year, my eye surgeon suggested that I should stop taking the drops to "see if anything changes". I did that for around a week in the summer only to find my appointment had been rescheduled. Frustrating! But, during that week, I never noticed any real discomfort in my eye. Encouraged, I tried again before the latest appointment in the world's hottest clinic.
If you've ever had ocular hypertension then you'll probably know the pain. Just like blood glucose levels, eyes have pressure levels that are given values. A normal value is in the teens, give or take a point or two. In 2014, my eye pressure was 44. I was immediately put on a drip to drop the pressure. I've suffered many pains in my life but eye pressure pain is by far the worst thing that I've ever felt. It lasted for 24 hours before I was able to get the drip into my hand and find relief. 24 hours of agony feels like a very long time, i wouldn't wish that pain on anybody. So, to be asked to stop the eye drops which help to control pressure was certainly a worry.
It's been over two weeks since I stopped the drops, 10 days since leaving the sauna ward, and all is stable in that eye. I don't know if I'll ever need to go back to the drops or if that's the end but I'm delighted. To just wake each day and do the T1D thing without reaching for two bottles and a tissue as well, to go to bed without fumbling around, late at night, for the same... it's less work! and it's less burden. This felt like life in 2009! only with better T1D management and no midlife crisis.
Was it the cinnamon, though?!
No. Let's not be silly. I've likely needed to stop the drops for a while. I have stability in both eyes and despite my visual impairment I consider myself to be very lucky and happy with my lot. Blessings counted.
To end this little blog post, I'd like to encourage you to always attend your eye screening appointments and any follow up appointments and to go for any treatments that you might need. I don't want any of you to go through the pain and darkness (physically and mentally) that I went through. If you do attend your appointments then you can reduce the chances of anything nasty happening to your eyes. Some of you will already be living with visual impairments and going through your own personal battles. Please don't ever give up on medical science, new treatments and new technologies. Ask about them, ask FOR them! and share your story without fear. There is no shame in having diabetes related eye complications.
Try the fried banana sandwich, too! :
- 2 slices of white bread, remove crusts
- 1 small sliced banana
- Some sugar (brown works best) and some ground cinnamon
Heat a tablespoon of butter in a pan, place the bread in the pan, add the banana to one slice while the bread browns and sprinkle your cinnamon and sugar on the banana. Flip the banana-less slice of bread on the top and flatten with a spatula. Turn a few times to brown evenly and sprinkle a little more sugar on each side.
You'll need insulin.
Tuesday, August 2, 2022
Too Much Or Not Enough
Those three pieces of advice might be right, of course. My own experience is based upon the "too much scanning" advice. It was likely well meaning! I had complained about injection burnout which may have been confused with general burnout. A high number of sensor scans may have raised a red flag and well meaning advice followed. It was the wrong advice because, for me, I wasn't scanning too much. Why? I live my life in my way as an individual. Scanning a sensor, when your phone is often in your hand due to work and other commitments, was not tasking me or burning me out. Perhaps if I was working 10 hours a day as a taxi driver or heart surgeon then the same number of scans would be difficult or even impossible and noteworthy as a cause of burnout.
"You're scanning too much" doesn't take into account me as a person with my own life. It compares me to others and even the HCP's life experience and what they believe to be the right amount. I stated why I scan as often as I do and why it's not a problem and we moved on. I don't fear speaking up during a consultation but I do know that others have issues in that setting and they feel anxious about doing anything unless they're nodding in agreement with an HCP.
"You seem to be scanning your Libre a lot. Is that causing you any problems?" might be a better way to address that red flag. But who am I to talk about communication!? *wink*
The same could be said for the other two pieces of advice, above. To notice something a little unusual is right and great care and it should be questioned but never judged or followed with a sweeping statement. "Too much" might be just right, "not enough" might be just right. Great care considers individuality and works with that. Ask questions, talk to your patient, get more information.
The above three pieces of advice might seem innocuous and to some that might be right, to others it might pile pressure on to an already over-spilling plate of decisions and burden and stress. That's why I'm very vocal about HCPs treating us as individuals in every respect and why it makes great sense to treat each other in the same way.
As you might have seen, a conflict has broken out in Ukraine as Russia has invaded that country. The scenes on TV and on social media are horrifying. What can we do? Well, I don't think there is a wrong way to help if you donate to charities who are active in helping the people of Ukraine. I support many charities but one which has always had my heart is MSF. Medecins Sans Frontieres translates as Doctors Without Borders. When it comes to the health of others in disaster areas, war zones and the like then I think we all have a duty to do what we can to help and help those who directly help! such as MSF. With that in mind, all donations to me via Buy Me a Coffee and all the pennies generated through the ads dotted around my pages will be donated to MSF. I will make up the difference for the fees taken by PayPal and Buy Me a Coffee. That will run until further notice, no time frames and possibly until Ukraine is a free country again. Thank you for reading my blog.