Popping Balloons.

Firstly, I feel a bit bad that only managed to publish 1 post for Diabetes Blog Week – next year I will try to improve on that! 

Secondly, when I was studying in the US I took a few acting classes. And in one of them we had to create Original Solo Productions for our final assessment. There was one girl whose performance was about how at night, when she can’t sleep, she has to write her thoughts down because otherwise they prevent her from drifting off. She illustrated this process by tying a bunch of balloons to her wrist which would literally ‘lift’ her off her pillow. It was really creative and great. And that’s how I feel right now.

To use that metaphor, today has been full of small situations where balloons have been tied to my wrist. One by one. And now, when it’s time to drift off, there’s a whole bunch of balloons preventing me from doing just that. And they’ve mostly all been diabetes coloured balloons (blue, obviously).   

So now, in an attempt to pop them and get some sleep tonight, I want to write them down.

Diabetes Balloon Bunch Part 1:

I stumbled across a blog by one of my favourite bloggers, Renza. She talked about a scary hypo and dealing with the emotional aftermath. The battle between taking precautions for your health, and making concessions to your independence and values. And it resonated with me deeply. And made me feel all kinds of things; empathetic, scared and confronted by the realities of living with type 1 diabetes and what can happen, moved by the honesty and power of sharing your experiences, inspired, and probably a few others.

But I didn’t have space to process them all at the time, so the feelings and worries and thoughts formed little balloons and accumulated on my wrist. And now as I wind down and attempt to go to sleep, I can’t help but notice them all, floating around my head. And the only thing I can think of to do with them, the only way I can envisage popping them, is to share them with the DOC.

Because at the end of the day, I can only do so much preparation in regards to my diabetes. I can’t pre-empt my antiseptic tea tree oil spilling all over my infusion set and ruining the adhesive. I can’t prevent blood blisters forming under some of my sites. I can’t determine whether that contributed to my slightly higher than normal blood sugars the past few days, or if it was the succession of Chinese food for dinner the past few nights, or something completely different. I can’t predict what new my new exercise regime is going to do to my levels: if it will cause a dramatic drop, if it will simply counter-act the aforementioned slightly higher than normal blood sugars, if it will do nothing, or if it will do a little bit of everything (just to keep me on my toes)! 

But I know I have control over how I deal with all of that. My attitude, and the anxiety I feel when I think of all of those things, and the stress it causes – especially when I try to think about them all at once!

And that control is really powerful. And that’s where the feeling inspired comes in. I’m very passionate about dealing with the mental burden and psycho-social aspects of living with diabetes. And I feel very strongly about the lack of resources that meet those needs here in WA. Which brings me to Diabetes Balloon Bunch Part 2.

But that’s a blog for another day… For now, it’s time to drift off to sleep!

 

Don’t judge me. Me, me, me, me, me.

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This week is Diabetes Blog Week, and I’m using it as the perfect opportunity to wade into the dblog world. I’m still very new to this (blogging thing). And it’s far from perfect. Which doesn’t sit well with me…And that’s why I’m excited about this. I really want to write. But more so, I just want to write. Without too much over-thinking or judging. Which kind of ties in nicely with today’s topic:

Share and Don’t Share.

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

While I LOVE the idea of my HCP’s listening to me, I don’t like the idea of them reading my blog. I want my blog to be a place where I can vent, and whinge, and be honest. Honest to a bunch of people I know GET it. Not a bunch of people whose feelings I have to feel responsible for, or tip-toe around. And when it comes to my HCP’s, even though their job is to help me, I very rarely feel like I get what I need from the sessions or time I have with them.

I feel embarrassed to ask something, or the right time never comes up, or we simply don’t click. I feel overwhelmed with all the information I’m getting, however wonderful and useful it is, that I don’t process it and take the time to ask questions. I’m scared I’ll offend them if I ask them to say it again, or say it in a way that actually works for me, or say it with a bit more understanding. I feel like they don’t get it, don’t care, or won’t be able to help – so why bother?

Don’t get me wrong, I have some great HCP’s who really listen to me. But I also have a lot who don’t. And that irks me. Because none of my HCP’s live with diabetes (to my knowledge). So unless they ask, how can they understand that “have you had any lows in the past week?” isn’t just a clinical question about a bunch of numbers my body is throwing at me, it’s about so much more. To me (me, me, me, me). It’s personal; It’s about the way I manage my condition, it’s about the way I live with it, it’s about control, and it’s about their understanding of all of that. And straight off the bat I feel like they don’t understand. Which makes me feel frustrated, angry and upset – all at the same time.

Because they could. If they just recognised the power of their language, the outcomes of our sessions would be so much better, I’d be so much happier, and they’d go through a lot less Kleenex in their consult rooms! If they just phrased their questions a tiny bit differently, it would make a huge difference. To me. Me, me, me, me, me. i.e. instead of “have you had any lows in the past week?” how about “tell me about how this past week has been for you.” or even “what do you really want to solve today? what do you need help with? what are you struggling with at the moment?” Any of those is an invitation for me to give them a bit of insight into my condition, tell them about what I’m struggling with, tell them about my goals and tell them how I want their help. And it’s usually got nothing to do with the number of lows I’m having in a week…

But it’s not all about me. If my health is their job, and that approach works for me, then surely it would make a huge difference to them as well – win, win.

So if I had to say something to my HCP’s, it would be:

Please remember ME. This is about me. Me, me, me, me, me. Don’t judge. Try and empathise. If you don’t know something about my condition, ask me. I don’t mind, in fact I’d love it. When you assume, that’s when I get angry, and frustrated, and the walls come up while the tissues come out.

Please remember the power you have to educate me about, empower me to look after, and engage me in my health. Recognise it, embrace it, honour it, and use it – wisely and gently, please.

I have everything I need to manage my condition in me, I may just forget it from time to time. Often, the ways you can help me the most are by reminding me of that, or just listening to me. Because often, what you don’t understand is how emotional diabetes is. When you listen to me, truly and simply just listen, I can guarantee you that I instantly feel better. And that helps more than being told what my fasting lipids are. 

And finally, please remember the power of your language.

Thanks,

Rachel. 🙂

It’s no fun being sick, but sometimes it should be.

This week has been a shocker. My stress levels, IBS, and blood sugars have all run amok. And yesterday, coming home from work on a Friday, with a host of fun social engagements planned for the weekend to combat my crappy week, I started to feel flu’y (totally a word). But it’s been the last straw, and probably a much needed rattle to my current mentality. I woke up this morning thinking that I would have to stay in bed, get some rest, be bored, be miserable, be sick, lonely & miss out on everything that I had planned. But then I thought, maybe there’s a middle ground here, maybe I don’t need to play the victim, maybe I can have my cake and eat it too. Maybe I can stop feeling sorry for myself, and start looking after myself – better than I think I have been. I realised that I’m not just sick of being sick, and sick of feeling sick, but mostly I’m sick of ‘thinking sick’ – in an attempt to put my health first lately, I seem to have lost a lot of the fun in my life. In an attempt to accept things, I seem to have become complacent with this icky place I’m in. Allowing the laziness, due to lack of energy, because my specialist can only see me next month and this is just for now, this is temporary, this is accepting things. Bulls**t. This is laying down your sword, this is giving in and playing the victim. Yes, I have no idea what causes my IBS to flare up, and that seems to wreak havoc on my body & my blood sugars. But just because I have no answers in the form of laboratory tests or a diagnosis, doesn’t mean I can’t listen to my body, make my own mind up, pave my own way. I have given all control of my body, my life, my future plans to doctors, and specialists and lab results. No wonder I’m miserable and second guessing it all at the moment, I’ve never had too much luck with any of those before, not reliably or consistently. Not in a way that I need. That’s only going to come from me, I can see that now – I think I’ve had a much needed ‘light bulb’ moment.

I feel like lately I have literally become a shell of myself. And I know that it’s not as easy as resorting to the old me, she’s in the past. She was pre-this journey. But I feel like perhaps I’ve laid all of her to bed, or to rest, when that’s probably the worst thing I could’ve done, no matter how great my intentions were. It’s time to rediscover old parts of me, and get in touch with the new me. Awaken certain parts of myself that have been put to rest. Get her up, get her moving, get her out of bed! Now, if only she could turn the television off… 😉

Grief.

Valentine’s Day this year marked a very special, but weird day for me. It was not only my first romantic 14th of February, celebrated in the way the holiday is intended to be, but it was also my 4 year diaversary. I’m trying to get Day of Diabetes Diagnosis (DODD) happenning, because i’m a big fan of acronyms & aliteration, but it doesn’t seem to be taking off… My diagnosis was pretty dramatic, there were ambulances & daughters not at home or answering their phones, blood tests coming back over 70mmol, nurses saying i was lucky to be alive, not believing how i was able to walk and not be in a coma. Lucky was a word thrown around a lot that night. And I can tell you one thing, I certainly didn’t feel lucky. My Mom did though. She knew she came close to losing me that night. So when she insisted on doing something to mark my 4 year anniversary, I obliged for her. I let her make a big deal of it for me, because I knew it was a big deal for her. Diabetes is a family disease, and that night changed her life too. So we had frozen yoghurt & coffee during the day, and I had a lovely romantic evening with my boyfriend. But when I got home, it hit me. I was reflecting and sad and grieving. And I was so grateful she had insisted on doing something. I’m very sentimental, and i’ve been through a lot of change & upheaval lately including moving house, so I had no old letters or family members to relive the memories with. As wonderful as my boyfriend is, he wasn’t there that night. Or the majority of the journey. I was desperate for something comforting & familiar. I just wanted to feel the love & support of my friends, hear that some people understood what an important day it was for me, in amongst all the love & joy. So i decided to put out a fb status asking for some spare love & hugs. And as usual, the DOC provides! I was overwhelmed with lovely, supportive messages. And they really helped.

But, I think it scared some people. Not in a really dramatic way, but just in a “quick, don’t let Rachel wallow” way. And it made me think for a few days about marking your DODD & acknowledging grief. Letting it into your life & honouring how you feel. I was told to look forwards, and not to live in the past. But I don’t think visiting the past is living in it. And I strongly believe that visiting the past, and accepting it, is a really healthy thing which allows us to move forward. Yes, I was really upset. Upset that I had to share this romantic day with some bad memories. Upset that it snuck up on me and ruined the evening. Upset that it reminded me of how different my life was back then, pre-diabetes. But it’s a part of my life, and i’m ok with that. I don’t love it, but I don’t hate or resent it (most of the time). I make the best I can out of it. This is the hand i was dealt, and I fully accept that no-ones life is perfect, we all just have to make it work for us. And I did just that that night. I cried in my bed while my boyfriend cuddled the crap out of me. I rehashed every memory about that night, i showed him pictures, making use of the only sentimental things I could get my hands on! And I felt so much better. I’ve heard that crying with someone is healing, and I felt very healed that night. The evening ended up being perfect. Very romantic, and full of love. But i didn’t turn a blind eye to my DODD, or dishonour how I felt. I let the grief in, but i didn’t cling on to it – I shared it around. Mom had some, my boyfriend had some, and my facebook friends did too.

I like to think that by reflecting on my DODD, feeling a bit sad, asking for some support, I’m not dwelling. I’m not living in the past. I’m looking forward, I’m just not going to let my past weigh me down wherever I am going.

To blog or not to blog….

…that is the question which I’ve been asking myself for a while now. I feel like I have a lot to say. But is it really worth putting it out there in the big ol interweb? That thought is kinda scary. I feel like blogging represents me relinquishing control. See I wouldn’t be a light blogger, I’d want to tackle big stuff. My life has a lot of ups and downs and can get pretty intense. I work pretty hard to keep boundaries, or I’m trying to. It’s a new coping mechanism. Working pretty well. See that, that there – that’s personal. But I feel like putting my journey out there, what I’ve been through. How I’ve coped. What I’ve done, where I’ve found comfort or solace or answers. Just admitting to how I feel, might help someone else out there who’s struggling with the same battles I am. Who faces the same things. Or processes life the same way I do. The thing is, I don’t know who that is.

Just over 3 years ago I was diagnosed with Type 1 Diabetes. I was 18. It was rough. It got rougher, and it hits home much more now then it did back then. But it was still a massive shock in 2009. For those who don’t know, Type 1 Diabetes (T1D) is an auto-immune disease in which the body decides to attack the beta cells in the pancreas. No biggy? Think again. Beta cells make insulin, which is needed by the body to unlock the energy from the carbohydrate foods we eat. Big deal. Think of insulin as a key, transporting the glucose in our blood to our muscles (or storing the excess as fat). Pretty freaking necessary for the body to function. So necessary that without replacement insulin, I’d probably be dead in a few days. Tops. Yeh, my body, in all its brilliance, decided to turn on my poor unsuspecting pancreas and kill all of those beta cells. So if I want to live I have to take 4-6 insulin injections daily (yes everyday) or wear an insulin pump 24/7. For the rest of my life. There is no cure (yet). And yes, I want to live. So I do it. I love when I talk to people who say “OMG, I could never be diabetic. I hate needles.” “Yeh, me too.” “No, like you dont understand. I HATE needles.” Believe it or not, ‘love of needles’ was not on the application form for diabetes. Once, I made myself sick at school trying to get out of vaccinations in year 8. Sometimes (most times) it takes me 20 minutes to do a set change (the patch change for an insulin pump, done every 3 days). I am the slowest injector on the planet. I have a knack for making phlebotomists uncomfortable with my tears when I get my 3-monthly bloods done. Every time, it’s a skill really. I hate needles. Not the point. The point is, is that T1D is an auto-immune disease, not a lifestyle disease. Please don’t get it confused with Type 2. They affect the same organ, yes. But they are completely different diseases. Type 2 is much more common – about 90% of diabetes is T2. Some of it is hereditary, but a lot of it is caused by diet, lifestyle and insufficient exercise. In most cases, it is managed with purely diet and lifestyle changes (eat less sugar and refined carbs, lose weight, exercise more). Sometimes it is managed by tablets and other oral medications. For very advanced Type 2, it is managed by insulin injections, usually only 1 or 2 a day though, I believe. And ‘graduating’ to injections does not make it then T1. The physiology behind why it was caused is completely different. It is a pet peeve of mine (along with almost all T1’s I know) when my condition is compared to that of someone with T2. Yes, diabetes is a big grey area. It is so personal and different and there are so many types and causes and unique cases. I get that. But I did nothing to cause my condition. I would do anything to reverse it. I do everything I can to manage it. It is not fair to compare my auto-immune disease to a lifestyle disease. I am all about awareness around this. There is WAY too much confusion (thanks media) and nothing frustrates me more than hearing an ad or reading a magazine which just uses the umbrella term “diabetes” – IT’S NOT THAT HARD TO SPECIFY WHICH ONE! End rant. And I hope I explained the differences well enough, accurately and without causing anyone too much offence. I can be really bad at political correctness, add that to the reasons why I’m apprehensive about starting a blog.

But If I’m honest, which I fully endeavour to be, this blog is for me. Not to get accolation or praise (although that is most certainly welcome!), not at all for sympathy (I don’t think I want that), not so much for recognition (although i have to admit I hope this helps people to understand my crazy D life) and not solely for me to talk. Vent? Yes. Mindlessly put stuff out into the world wide web? No. I want to open up a dialogue around this stuff. This stuff which no-one seems to get. Taboo’s we don’t talk about? Perhaps thats it. But stuff that leaves us feeling like we’re the only ones in the world going through this, feeling like this, alone….I know Im not the only one. Right? I want to share; be heard and hear other people. Community is what I’m all about. Mutual support. So if something here sings out to you, hit me back. I would love it. I’m opening up the can of worms. Here’s to blogging people!

I really want to mention something I read in a blog I stumbled on a little while ago which said “diabetes doesnt define who I am, it just helps explain me.” A lot. Especially at the moment.

Until next time.

R. 🙂