The Healthcare Experience - Thursday - Diabetes Blog Week

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

This is straight forward - my healthcare team are the best. There's not much else to it, my consultant is fantastic. He listens to me, explains things so I understand them, supports my decision even if he disagrees and helps me with pretty much everything I need. 

My DSN is my go to. Even when I'm not venting about something diabetes related. She gets me. She understands I'm not perfect and takes on board that I'm doing my best and that's good enough. She's supportive, straight talking, compassionate and best of all calm when I'm having a meltdown. Even the DSN she's training to take vet when she retires is fabulous. She's great. 

The rest of the team are exactly the same give or take the odd personality clash. 

However healthcare outside of specialists I think could be improved. I think people who don't understand type one find it very difficult to advise. When I was in hospital having my baby I was asked to self manage which we agreed to but when I was feeling unwell post surgery I was told I was being over reactive to my blood sugars. Being that I was on a pump and knew if I hadn't treated then I'd be massively off target later I ignored her. But I felt they were always quick to blame my diabetes. 

I always wonder at appointments why they measure my height? At my age I'm not getting any taller...! 

I also get annoyed when I go to an aappointment at say 2 o'clock and they come out and weight me/take height/hba1c and then leave me in a waiting room for an hour. Then when I ask why they're keeping me waiting they say well you were seen at 2...! I feel like they're suggesting my time isn't important. 

My biggest rant I suppose is funding - CGM is funded during pregnancy or in trying to get pregnant. Whilst I think this is great it needs to be extended. Following trying for a baby, getting a good Hba1c and delivering a baby it's unrealistic to think that it'll just drop back into place! You need a least six months postnatal sensors to achieve this. On the flip side of this - if you don't want children does that make you any less entitled to CGM? I've also heard CGM IS often funded for people who've abused their condition and so have no hypo awareness. It seems unfair to not give someone who wants to improve there care funding but to give it to someone who doesn't care! 

I suppose to be honest I don't have much to moan about from a diabetes healthcare point of view. To be honest I'm pretty pleased about that. 

Language and diabetes - Wednesday - Diabetes Blog Week

NThere is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.

Hmmmm I'm stuck... This is a bit of a two edged sword in that I really don't care about 'language' that relates to diabetes in the sense of whether they call me diabetic, a person with diabetes or even someone 'suffering' with diabetes. I don't care if we call it blood testing, checking bloods or just testing. I don't mind whether we're injecting, jabbing, stabbing or pricking. So really it would seem that language doesn't bother me but it does. The flip side of the sword is I've been on the receiving end of some diabetes targeted abuse, bullying I suppose. 

I've never hidden my condition, it's part of me. Like the colour of my hair, my height and my temper. So when I meet new people it's not normally long before my diabetes enters the relationship. As always this happened with a group of people I called friends, some of who are still on my FB friends list and so may even read this. They accepted my blood sugars and condition or so it seemed, I'd test at meals and inject as and when necessary. I then moved to my pump, these people seemed to be there for that too. My freedom seemed to sore so I was happy to bolus in front of them and even on one or two occasions do a set change. If they asked questions I was happy to share. So how does this relate to language? Well one of these people decided it was unacceptable that I didn't do as instructed, that I dared to challenge what they had decided. The easiest target to upset me - diabetes. Apparently all of a sudden my insulin pump made people uncomfortable. My blood sugar testing kit offended people. Apparently testing my blood sugar at the table was dirty! It'd be better if I went to the toilet...erm no. So you'd think that other people would be supportive, point out such comments are wrong and that behaving in this way was unfair. Nope. The rest of the group accepted it by default that this person was right, one even suggested I was in the wrong for testing in public. I never forced these people to watch, I don't go round randomly finger pricking people. So now we don't speak and so yes, in this way yes language hurt me. But I won't be a sheep and I won't be ashamed of who I am. On this occasion I learnt to stand up for myself, as no one else did. 

So yes, language can be hurtful, but I always try to look at what the intent behind a comment was before I respond to it. I suppose the answer is to use language positively to educate and to try and ignore the negatives or at least not respond to it. 

If you're one of the people responsible for this experience I can't say I forgive you, I don't but I also can't say I understand you. Feel free to explain yourself.

The Other Half of Diabetes - Tuesday - Diabetes Blog Week

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

What a consideration, the mental component of diabetes. It's like a small buzzing noise in your brain that you can't switch off. It's always there. Always. Let's consider the impact of the average day - the mental component kicks in before I get out of bed, blood sugar. What is it? Do I need to do anything with the number I get? Am I happy with the number? Breakfast? How many carbs? Bolus? How much? Straight in? Over half an hour? An hour? 50/50? Am I exercising this morning? What time will I eat lunch? Am I going out? What should I pack? Do I  need snacks? At lunch time the blood sugar and bolus vs carbs debate kicks off again and then again at tea time. We also have those lovely set change days just to add some variety to the mix. This doesn't even consider blocked infusion sets, stress, illness, unexpected exercise or when someone eats your lunch! On top of all this recently I really also had the experiences of pregnancy hormones and the impact of post natal alterations! All this inside my head on top of the everyday stuff. 

So how do I cope? 

I'm lucky in the sense that I have people to offload to. Depending on what I need though depends on who I chose as often it's other complications having an impact on my condition and causing waves. 

Firstly I have the best DSN going. I mean my diabetic nurse is amazing. She is exceptionally supportive, she doesn't tell me off or judge and yet somehow she makes me realise what I need to be doing. She helps me be the better person I know I need and want to be. 

My family. My husband has learnt the art of 'yes dear'. If I need to vent and I just want someone to listen (or appear to be listening) he's the man for the job. He also knows when to back off and say nothing. When not to pull the Tigers tail, very often this is when the tiger has a low blood sugar. 

I also have a very straight talking sister who is good at listening but also very blunt in giving you the bottom line of how things are. No sugar coating just the truth. My mum is also a rock, I can tell her literally anything and often I'm sure share to much information. But she always knows what to say. How to calm me down. Once I'm calm it's easier to deal with problems. 

So family and professional aside what's the best option? My friends. I have two amazing friends who will know she they are if and when they read this. They listen, don't judge and ask questions which help me work through whatever situation I've worked myself into. They make good brews (or know where to find one) and give good hugs. They could probably finish most of my stories for me now and yet they don't. They listen as the same crisis rears its head for the fifth time! Over the past few months they've listened as I've laughed, cried and felt like my world was darker than I've ever known. They've listened and helped me far more than they realise. Meeting for breakfast or sitting talking late at night when I'm panicking is helping more than they know. I may not see or speak to them everyday but when we do it's like we're never apart.

So how do I cope? 

     Don't focus on your own flaws either

     Don't be told what to do, be part of the decision

     Don't be mean to yourself. 

              🙈🙉🙊

      Always focus on what you've done right that day

      Remember no one else is perfect

      Be kind to yourself, and let others help you. 

Find something to do where you can get peace (I like a walk in the rain as the dog is  a fab listener). This brings me to the important point TALK. Talk to people you're comfortable with. People who don't mind hearing the same problem over and over.  People who can advise without judging. Remember you can handle whatever gets thrown at you with the right skills, sometimes you need your team to have all the skills. I like to think of my friends and family as a deck of cards, I've got kings, queens, sixes and sevens that come in red or black, we even have a joker or two but when one of theme missing my deck doesn't work. ❤️

Message Monday - Diabetes Blog Week

     

Welcome to the first day of the seventh Diabetes Blog Week.  

Today’s topic is Message Monday.  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

So it's the start of Diabetes Blig Week and to be honest when I first read the suggestion I was a little confused - message Monday? Am I telling people what diabetes is? Am I explaining how it impacts on my life? Am I talking about the different types of diabetes? Do I try and educate people? But then I read it again, Message Monday - what's my message about my condition. 

That seems an odd thing to write 'my condition' because I think a common assumption is that everyone with diabetes is the same. I get fed up of hearing people comment on conditions they don't understand or even know much about. I'd never ever dream of advising someone who had type two diabetes as I know very little about it. Gestational diabetes? What the heck?! I have had type one for mist of my life and to be honest don't remember not having it. I can think of ten other type ones that I know off the top of my head, we all take insulin, yes, we all are entitled to the same check ups, yes, our conditions are the same, erm NO! 

Maybe that's harsh but it's true, what causes me to hypo might not have any impact on someone else.  Stress - makes me fly high for about half an hour normally, then I crash. Some diabetics I know would be high until the following day. Hospital visits, guaranteed I'll have a hypo that night. Why? No idea but it happens. So as you probably guessed I HATE when people roll their eyes and sigh when something happens out of the blue. I hate when people expect you to conform to something that pretty much could be described as having its own identity. 

I also find it infuriating when people make the common assumptions;

         - Oh did you get it because you ate too much sugar? 

         > No my pancreas packed up and went on vacation! 

         - You can't eat that! 

         > Watch me

         - If you do some exercise and eat better you'll be cured. 

         > Do you promise? I think I'll probably still need insulin

         - So you inject every day? And prick your finger?

         > Nope only on the days I don't want to go to hospital

         - Are you allowed to do that?

         > Are you? 

         - Are you going to test here? 

         > No I got my blood kit out as I thought it would make an interesting centre piece!! 

         - I hate blood/needles 

         > Don't look

* there are many more but I'm sure you get the picture

       

So my first blog appears as a rant but it's not. My message is this - To those non diabetics out there, think before you speak. Some of us are connected to our lovely pumps all day whilst others inject (sometimes several times a day) we don't need loads of unnecessary questions and looks of contempt. If you don't like it don't look! To all of my diabetic friends and bloggers you are all amazing people who inspire me with your confidence, passion and stories. Let's do this.