Sometimes There is nothing to do and sometimes diabetes is a choice.

I have so many things to blog about running around my head, both for here and la_petite_sam, my more day to day non health blog. Wow so first up, the second edition of the Pillow Fort magazine came out and I am published in it. How fabulous no? The subject of this issue was ‘fun’ and I wrote about having fun in your bed. A lot of people think you are stuck inside a lot and think ‘urgh no fun’ well…no actually, lots of fun! It was fun and seeing myself published that way was a very emotional moment.

Remember you can get the magazine from the link in my sidebar or https://www.e-junkie.com/ecom/gb.php?cl=260759&c=ib&aff=267994 here if it sounds like your thing. It is really laid back and I think a lot of people in the diabetic, mental health and endomitriosis communities that I see on here would have really good things to share. Think about submitting an article maybe? Or just give it a wee read. You download it sure but it is all colourful and stuff.

Anyway, a lot has been going on with me. I’m on a roll in all stations with my pump. Something has just sort of clicked into place with it. I was told that would happen but it is one thing to be told and another to experience. I mean it isn’t perfect. With my eczema my sites always itch like hell and I want to cry. It is terrible. I’m pretty much allergic to the sticky part of my pump site but I need my pump. I’m pretty much always in pain or discomfort over something and have been for years so I guess I just need to accept it and do my best.

I am a lot more stable blood sugar wise. Waking up with an in target reading is an amazing feeling. I feel the rest of it is just what normal diabetics deal with. The horrid life stopping complication that was dawn phenomenon is dealt with. Now I just need to deal with the rest of it and sure that is a lot but when I think of how before was? I take it ever time. I think what bugged me before was diabetics ranting and raving about things they COULD control. Being diabetic is crap. I hate it. I don’t want to be. But hating it won’t cure us. It won’t change us. It won’t fix us. I had a complication I could not control with injections. My doctors were on the bases of managing the rest of it which I did pretty much perfectly but this one thing was out of a pen’s control. Now if my dawn phenomenon is an issue then it is my fault. I have the tools but I’m not using them properly. The answer it to talk to docs, do midnight tests, do things right and find the answer. I CAN do that and that is huge to me. Before I couldn’t. I was totally powerless to the whims of my crazy liver that thought it was off to outrun a lion.

I totally believe in ‘do your best, that is all they can ask’ but sometimes I ask myself if people really are doing their best? Could they do more? This disease can kill us. It comes before EVERYTHING else to me. What the fuck does anything else matter if you’re in ketoacidosis? Being powerless made me really envy those that had a power and really angry at those that have it and do nothing. They say work got in the way, kids, life, stuff. Yeah but if you are not on top of your diabetes and it doesn’t come first you lose ALL of that. Ok, you may not go into keto but anything outside of decent range makes a diabetic feel lethargic and we all know that. To deny it is lying to yourself.

I am not just a diabetic but if I don’t manage it to the best of my EFFORTS then I may slowly become my diabetes. Again. Some don’t have that choice. The diabetes takes over and there is nothing they can do. I both envy and hate those that can do something but chose not to.

That is just type one though. Then there are those told if they don’t change they are going to become type 2 and those are the people that make me sob into my pillow. Most do nothing. Or they become type 2 because they don’t listen to people warning them about lifestyle choices and diet. Then they have this organ failure which they could have prevented and chose not to. They chose to do nothing and not listen and then the organ fails. And people don’t want to say that. Heart failure, kidney failure, lung failure get sympathy but diabetics get scorn and hatred. Type ones had their organs fail out of NOTHING they did. SOME type tows did nothing. Some had a chance to do something and that is what gets me. That is what hurts. That is what makes me think ‘why me? I did nothing wrong.’

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Dblog 5

Share the (non-medical) tips and tricks that help you in the day-to-day management of diabetes. Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-scree. Please remember to give non-medical advice only!

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I don’t think there really are obvious hacks as such. Shortcuts never end well with this disease. Tips? Maybe. I always order my prescription a week before most people would because then if something goes wrong there is time to sort it. I don’t want to be that person screaming at the pharmacist because they are out of stock you know? If I’m ahead it is an annoyance, not dangerous and so less stressful.

I carry glucose tabs around even though I prefer lucozade cause they weigh less and I don’t feel the weight and get irked about how much diabetes is causing other issues like back pain or how I can’t fit as much as others into my bag. I make sure my emergency kit for my pump is in a brightly coloured bag I really like so again, I don’t think about the space and weight it takes up. I have an iron on bright blue butterfly on my blood kit so it looks more cheerful and less like a torture set up.

A lot of my carb guessing when I’m out and about isn’t something I can pass on or describe. It is the result of combined knowledge from my mother and myself and a healthy dose of sheer dumb luck when it goes right. Plenty of times it goes wrong. Maybe I have more things but I’ve been at this game a long time so they just are part of it all now. I don’t know where diabetes stops and I begin, where the rules and the tips and hacks meld. I just get on with it the best I can.

Dblog 4 – Coping

Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets us through a hard day. Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost? Maybe we’ve done that and we can help others do it too?

Is Wine a legit answer? Probably not all that healthy. On a serious note, rewards. I reward myself constantly these days for getting through. Sometimes yes that is a nice bottle of Sauvingnon Blanc and other times it is the 35p Tiger bread baguette you can get in Asda. Sometimes I swipe calories from tomorrow out my meal plan and have cheese on toast for supper. It is those little rewards that make it easier. Another thing is making my hypo treatments cool things. I prefer tropical dextrose tabs so I will hunt high and low for them because hypos suck ok? They suck less when I can stomach what I’m treating them with. I haul around orange lucozade because I can’t stomach those little coke cans the hospital likes and I’m not a big jelly baby fan.

With other aspects of life I have other plans but with diabetes it is about food.

It is about food because diabetes centres around food. Some will claim it won’t but unless you live on water for a week and then die it does. It is all about what you eat, when you eat it and what you plan to do around the next 5 hours around that plate. Disagreeing is kidding ourselves as diabetics. Even if we have carb free meals we get nervous and check our blood to make sure, make sure, make extra sure those basals are right and we’re ok right? All about food. So when I have a bad day? Food. Most of the time plain ass carbs I can count without worry. I like to make a toastie, have some crackers or get that extra cheesy bag of Mccoy’s crisps.

For me it is about telling myself that while one part of my day is bad I can still find the good. Tomorrow might not be that bad. It might be though. Let’s be honest it might but right NOW, I have my little baguette with Philadelphia spread and pastrami in and I’m loving life. It is saying ok today was rubbish but there is some wine there so let’s have a glass and put on a good film or catch up on that last episode of Marvel Agents of Shield. It is about clawing back the day, even for half an hour. I use food because diabetes can’t take that until later, until outside the moment. I could see read X or play Y but my brain might not cope with that after a bad D day so I find the things I know I can do. Sure I may need to watch that episode again to really get it but I will still zone out and if I ‘m that bad I’m not likely to realise it at the time. It is about rewarding the human me with human things and putting the diabetic to the side after diabetes has taken the rest of the day. It is important and it gets me through.

Dblog 3

May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

Ah, another hard one. A hard one indeed. I think the honest truth to that would be that often I simply don’t cope at all. I get angry and frustrated and I feel hopeless. I get paranoid about possible complications. Remember, I’m not working right now nor attending university because of my diabetes. It has taken away two years of my life that I can never get back, never mind the ones I struggled on with.

It is emotional because it dictates my every move from what goes in my handbag to which shoes I should sensibly buy to protect my feet. It doesn’t go away. It is not just insulin and carbohydrates with blood tests in-between. Maybe it would be easier if it was. There are the times when friends don’t understand why you can’t do something or other or why you can’t do it right now. People don’t understand why you can feel fabulous on a 7.0 one day and feel like your body is a battleground with shadows under your eyes and the same reading the next.

It is the constant correcting of false information and the constant answering of questions you answer so others don’t get asked but don’t really want to talk about. It is associating certain places or activates with highs or lows and getting anxious and depressed and wanting to avoid it all. It is knowing that whether your control is good, bad or indifferent the first thing you do in the morning is test your blood and the last thing you do at night is test it again.

Dblog 2

Poetry you say?

 

Highs and lows

they come and go.

Always expected to be ok

Can never let any of it show.

‘You don’t look ill’

is what they say

but they don’t live my life

they don’t know my day.

No, you can’t see it

But then I guess you might.

Purple eyes and black pircked fingers

with every day bringing a new fight.

Highs and lows

they come and go

but diabetes remains

a weakness I can never show.

 

Dblog 1

I’ve been gone nearly two weeks good grief. I have a few ideas for blogs and a few sentences done here and there but I’ve been busy and thankfully with LIFE and not HEALTH. Yay. Anyway, somehow I missed this week coming but Dblog week is huge for me. I love seeing what people have to say and I love the challenge of other people picking what I write about. I’d love others to prompt me more to be honest. I want to know what people want to know…you know?

So day 1. Let’s do this.

Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.

 

 
Wow. I love this question but I’ve not thought about it too much. All of the above matter to me. It is hard to pick something that means the most because the lack of anything in a diabetics life can be costly. I spend years fighting for an insulin pump and many more years than that hiding hypos at school and stumbling into the toilet to devour glucose tablets between classes. I was so quiet no one noticed if I was staring into space and it may sound arrogant but most classes I found so easy that even my hypo brain could spit out the right answer if I WAS asked. I think about test strip accuracy and sometimes I think there is a lack of appreciation for how much better they are these days and the fact that my mother grew up with no strips at all. I wish pumps were easier to get and yet I understand why so many would shoot themselves in the foot personally before accepting one. I understand that people are diverse. I think Grump summed it all up well. Choice is the big thing.

But I think I’m going to take this down another route, to put another idea out there. I really wish that the diabetic community would be more appreciative of what it does have. I hear about what people don’t have all the time and rarely do I see people talking about how they appreciate that their country has novorapid or how amazing it is that blood glucose monitors that also check ketones exist. Before those meters we were forever an hour behind. Urine told is what was going on a while ago. These monitors tell us what is going on NOW but do I ever see them being praised? No. I see people talking about how clunky those monitors are and how they like their other ones better. I see people demanding the NHS to hand over another £150 meter (at least) so they can test on two different types. We see them for less than that in Boots chemist but your Spanish pal would hand over a lot of their monthly wage to replace theirs in the local chemist. THAT makes my blood boil. I understand having a back up meter and I understand that is not always the same as the primary but to see people have a meter for ketones, a meter for blood, a backup meter and then….then sit and wonder why the NHS can’t afford to hand everyone a pump? I hate that.

So many want everything and they want it right this instant now. They want pumps, the best insulin, a million strips, five different testing kits, a GCM and everything that comes with those gadgets and then this, that and the other on top. It all costs money. Of course we deserve to have the best treatment possible, of course I understand the desire but horror stories in the newspapers aside diabetes is expensive. Budgets run out. I started on one meter with 4 strips a day, plastic needles, bottles of insulin and sticks to pee on if I thought I had ketones and my mother was gobsmacked because she didn’t even have a meter back then. Her HBA1C was good enough that they couldn’t justify the money on it.

Whether it is an insurance provider, the NHS or equivalent or your own pocket, being diabetic costs SOMEONE a fuckton of money and as the saying goes it doesn’t grow on trees.

So yeah, it does make my blood boil when some people are going bezerk when they DO have hypo awareness and are throwing the toys out the pram because they don’t have a GCM when someone in Africa literally has no insulin and will be dead next week. I am so hyper aware of the cost I am on the NHS with my pump. My doctor cut my blood strip allowance by a box a month but on the pump I’m testing less so I said nothing because I don’t’ need that box. Someone else does. I honestly think so many do over test out of fear, yes fear our own hospitals created in our minds but fear. DAFNE patients are told they shouldn’t need to test more than 4 or 5 times a day unless they are a driver and/or feel themselves going hypo or high. Too many doctors are pulling their hair out because patients are interfering before insulin runs out or carbs run their course.

Not to say that everyone is pushing too much or that everyone asking for something is wrong or that a good hba1c means good control. I mean I know that best. I had a good hba1c and couldn’t be signed fit for work. But I think it would be ignorant to try and deny that so many just want the hospital to give them some expensive piece of kit to sort their problems. Or they want something to make them feel like they don’t have diabetes so diabetes doesn’t interfere with their lives and that is just naive. We will ALWAYS be diabetic and disabled and different from everyone else. Over testing doesn’t help anyone. It probably makes them fear their disease more, makes them interfere more, creates more problem and destroys the feeling in their fingers or just, makes them really fucking sore.

People want money into artificial pancreas research, money into stem cell research, money into cloning healthy pancreas’, money into strips, money into pumps, money into gcms, money into research, money into programmes to teach people carb counting, money into this, money into that, money in the next thing. I want money into ALL of that but honestly? There is only so much money. There are only so many hours in a week our nurses and doctors can work. There is only so much they can do.

I passionately want the diabetic community to give some people a break. No, I don’t think saying ‘but I’m type 1’ is enough reason for a doctor to prescribe you all the test strips. Budgets happen. Budgets suck but they happen. And one extra box of strips for you is one less box for someone else.

Yes, push for more than what we have but be grateful and acknowledge what we have NOW. A hundred years ago we’d be dead. Fifty years ago certain foods were banned completely. Twenty five years ago most of us could not test blood sugars at home. I could have gone private and spend thousands to get my pump instantly but I chose not to take out a lone. I chose to wait. There is a choice within the UK on that front not often talked about. It IS there though. Honestly, I think we’d get more results in regards to what we do want later if we acknowledge to people what we have now. And that is a hell of a lot. An expensive lot.

If I Ruled the World

I don’t usually reblog things but this is important and so very true. Choice is the thing diabetics are denied and then we are crucified for choosing the best we can and not getting the results OTHER people want.

The Grumpy Pumper

Change World

So. If I could change the world what would I do??

Easy! Abolish gyms, make smiling illegal and raise the recommended alcohol limit to whatever it takes to make you fall over. Twice.

Oh….. You mean in terms of Diabetes?

Well. That’s easy too isn’t it? Cure it!

Ok, so it’s not that simple is it? Nope. Because apart from a cure (10 years kids, just 10 years) what we want for our Diabetes care and management is an individual choice. A choice based on what we consider to be important to us, for our quality of life.

So, if I could change the world, the 2nd most important thing to me is for every PWD (regardless of Type) to have choice.

Choice of the method in which they manage their Diabetes, without having to fight for a pump, or being judged for wanting to be on MDI.

Choice…

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