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Thursday, 30 October 2014

You ARE An Advocate.

On Tuesday, I ran the Our Diabetes Twitter account. With Diabetes Awareness Month just around the corner, I decided to talk about advocacy. The very last question I asked was the following:

Do you consider yourself to be an advocate?

A number of the responses to this question can be summed up with one word: No.

Don't get me wrong, there were some people that responded saying yes, but I didn't feel like "yes" was the majority.

But here's why it should have been. (In my opinion, at least!)

It doesn't matter how big or small your act of advocacy is, what ever effort you make means that, in my eyes, you are an advocate.

If you write a blog, you are an advocate.

If you take part in discussions online, such as the Our Diabetes chat or the GBDOC chats, you are an advocate.

If you talk to your local MPs, or write to them, about diabetes-related issues, you are an advocate.

If you give talks at conferences, you are an advocate.

If you give talks in your local community, you are an advocate.

Hell, if you just give a talk diabetes with the person that sits at the desk opposite you at work, or someone who asks what you're doing when you check your blood sugar, you are an advocate.

If you tweet about your diabetes, or write a Facebook status, or post a picture on Instagram of something diabetes-related, you are an advocate.

If you correct a comment, or speak up about a stigma, you are an advocate.

I used to think that to be considered an advocate, you should do something HUGE (all caps), but I no longer believe that to be the case. It doesn't matter how small or insignificant you feel your act is, it matters. It all matters. You are an advocate. And for that, I thank you.  

Tuesday, 28 October 2014

Reworking The Routine.

I love that I now have a job. But trying to establish any sense of routine is hard going at the moment. 

For me, routine is the best thing for my diabetes management. Whilst at uni, I used to get up, go to the gym, go to class/work on assignments, go home. It was great. When I wasn't working, I made sure that I woke up at a similar time every day, and I'd go for a run most mornings.

Now that I work, things are trickier. I start work at 7am. So I wake up at 5.30am to leave at 6am-ish to get the train. The walk to the station somewhat wakes me up, as does the coffee in my thermos. I eat a piece of fruit on the train, as I'm not usually that hungry, but I want to keep starvation ketones at bay after they reared their ugly heads on my second day. I go on lunch around midday, and finish at 3pm. By the time I get home, I am shattered. I haven't been working out, but I want to be. I just don't feel like I have the energy. I now drink far too much caffeine to get through the day. I don't feel like I have the time to do anything online (checking emails is a rarity at the moment, much like blogging and spending some time on Facebook and Twitter). I even struggle to just keep in touch with friends in the same town as me. 

It's time to re-balance things, instead of continuing to float on through, as it's not doing me any favours. So, in list form (a favourite of mine if you haven't noticed), I give you my game-plan:
  1. Go to bed earlier! To be quite honest, it's no wonder I feel so tired when I'm getting up at 5.30am yet still going to bed around 11.30pm!
  2. Cut back on the caffeine! Ideally, I'd like to go back to decaf. I've done it before, so I can do it again. 
  3. Turn email alerts off on my phone. As soon as this blog post is published, I'm going to do this one. Not exactly health-related, I know, but one that will help me stay on top of emails at least! By actually having to log on to my computer to access emails, I will read and respond straight away, and delete whatever crap that comes through as well. I look forward to having an organised inbox!
  4. Basal test on a work day. I find my blood sugar in the 4s around 9am, so I set a temp basal that then alarms when it's finished, usually when I'm talking to someone important! I think it's time to look at setting up a new basal profile, so I can switch for weekdays and weekends.
  5. Once all of the above are done (i.e once I don't feel like a zombie, have a better idea of what my blood sugars are doing whilst I'm at work, and not as heavily powered by caffeine as I am) look at bringing back the workouts. Not necessarily daily like before, but at least twice a week initially, and increase accordingly. 
As always, keeping myself accountable by writing my plan here. Also means I can look back and think something along the lines of "What a load of crap! I've got this!" Kind of like I do with a lot of my blog posts!

Saturday, 18 October 2014

Oh, Hi There Glowing Screen!

So life's kind of got in the way this past week. An update, in bullet point fashion:
 
Source.
  • I registered with a new GP. I was told that during the "registration appointment" I would be able to discuss the things I wanted to discuss. Well, I couldn't. The appointment was with a nurse. She had to refer me to a DSN to discuss diabetes and another nurse to discuss the pill. Brilliant. Two extra appointments. I did get the flu jab though. So that's one less thing I need to do. 
  • I'M EMPLOYED!! Last Friday, I was offered a job and I accepted. I started on Monday, and have just finished my first week there. So far, so good.
  • Our Diabetes celebrated a year of tweet chats and support this week. A huge well done to founders David Cragg and Laura Cleverly! It's something I'm honoured to be a part of.
  • I was reminded of how much ketones suck. Not that I really needed reminding. Sitting at my desk with ketones, but a blood sugar of 5.1mmol, left me baffled. Until I remembered starvation ketones. Note to self: eat breakfast, no matter how early I have to start work.
  • I attended the JDRF Discovery Evening in London, which was such a great night. I met those behind T1 International, caught up with Gavin Griffiths, aka Diathlete (who has just finished his American tour) and got to give the very lovely Jen Grieves the hug I've been wanting to give her since she wrote That Post. (Capital 'T', capital 'P'). I also had the chance to put a few faces to twitter-handles, which was awesome. A huge thank you to all those at JDRF for organising the night!
  • Thursday saw the Quality in Care Award Ceremony for Diabetes, with Roddy Riddle winning the People's Choice Award. A full list of results can be found here.
  • Diabetes Awareness Month is fast approaching (how are we more than halfway through October?!) Already, advocacy campaigns are popping up on social media, such as the Smash Diabetes initiative from Glu and JDRF UK's Type Onesie is also making a comeback. I'm looking forward to hearing more as November gets closer.
 
Happy Saturday!  

Thursday, 9 October 2014

Changing Teams.

Being diagnosed at 17, moving away six months later, doing a year abroad and then going back to uni for one more year means I've switched up my GP and health care team more times than I like. I've had three GPs since diagnosis, two consultants and spoken to a number of diabetes specialist nurses. 

Source.
Since graduating from university, I've moved back to my hometown, meaning, once again, I'm going through the process of changing health care teams. Difference is, this time I'm a hell of a lot more apprehensive about the whole thing. 

For the last four years (because they were extremely accommodating when it came to my year abroad), I've had access to a brilliant health care team at the diabetes clinic of the hospital in my uni town. I've always been able to see the same consultant, whom I have a lot of respect for, I've been able to phone, email and drop in to see a DSN, request appointments with a dietitian when appropriate and, not that it's a service I've used, I also could have had access to a diabetes psychologist. Having seen the same consultant over these past few years, I feel extremely comfortable walking into her office, safe from any judgement over my numbers. There have been times when I've walked in, head held high because I know I've had a really good few months, and there have been times when I've broken down as soon as her door is closed as I'd found myself in a place I didn't know how to get out of.

So, yeah, changing health care teams is making me feel rather uneasy at present, purely and simply because I'm so worried I'm not going to have the same relationship with my consultant as I've had. 

That, and there's my pump funding that needs to be taken into account, as, to be quite honest, I have no idea what happens there (if anyone can shed any light on this matter, that would be awesome!) 

Some say I'm just being silly, but I don't think it's unjustified for me to want to know I'm going to get the same level of care as I have been receiving. This is my health at the end of the day, and I think it's important to build trust between the patient and HCP, in whatever capacity. I like that I've felt safe in my consultant's office, and that's something I want to have with my next consultant, DSN and GP. 

This is an anxious and uncomfortable time in terms of my diabetes health care. Here's hoping it doesn't last long.   

Tuesday, 7 October 2014

What I'm Watching.

A couple of things have caught my eye recently.

First - it's not "All About That Bass", but All About That Cure.
 
Second, this brilliant speech (finally found the video to insert here!) that Kim (Texting My Pancreas) gave at the Medicine X Conference last month. All I can say is WOW! 



Happy watching!

Thursday, 2 October 2014

Resonates.

I read a lot of diabetes blogs. I don't often comment, unless I feel I have something to say, but I read. I usually find myself nodding along thinking "Yeah! Me too! I get it!". Other times, I'm learning of new advocacy efforts, or reading a commentary on an article/research piece/other subject. And sometimes, just sometimes, I'm hit with a post that goes that little bit further. It resonates. It sticks with me for days. It becomes bookmarked in my browser so that I can go back to it. I want to comment, but I can't string a sentence together. Well, one that makes any sense, anyway! Because, more often than not, those posts - those ones that resonate - I'm reading them and thinking this is (or was) me.

When such blog posts come along, I sit in front of my computer screen, brain working fast to put words together to leave a comment, fingers itching to tap letters on the keyboard. But nothing happens. My brain doesn't formulate any words and my fingers don't eagerly tap away. I just sit there, often wishing I could jump through my laptop screen to give the writer a big hug. Because when words fail me, that's what I do.

Image credit to Dallas Clayton.
It saddens me when I read these types of post, knowing that there are others who are (were) struggling in the same way I am (or was), but at the same time, as a reader, it also brings great comfort and reassurance that I'm not alone. It's the reason I am SO grateful for each and every person who has made the decision to write about their diabetes-life online, no matter the perspective (type one, type two, type 1.5 or parent) or how difficult the subject.

Finally, to the writer of the blog post that's stuck with me recently (resulting in this pretty pointless blog post): a BIG HUG and a whole load of thanks for sharing.

 

Tuesday, 30 September 2014

TALKing Hypos.

This week (September 29th - October 5th) is Hypo Awareness Week. "The aim of Hypo Awareness Week is to raise awareness of hypoglycaemia in the inpatient setting to help hospital staff recognise and treat symptoms and refer patients to the appropriate care teams."
NovoNordisk: Official partner of Hypo Awareness Week 2014.
This year's theme is "TALK hypos" (Think, Ask, Learn and Keep track of [hypos]), encouraging people with diabetes to discuss hypos with their health care teams and vice versa.

My hypos come in various forms but, more often than not, I look like I've got it together, despite how debilitating a low blood sugar feels. There's a video by Kerri Sparling of Six Until Me, in which she video-blogs whilst low. 


"I look and I sort of sound like I've got my shit together, but I don't. I felt so shakey and, actually, after I turned off the camera, I was talking to myself this was stupid, why did you do that? And then I kind of sat on the floor at my house and waited ten minutes for my blood sugar to come up and it was really weird, because it felt so debilitating, but it didn't look really debilitating. It looked...I could have fooled somebody into thinking I was fine."
 
For me, this is why we need to talk hypos: just because we may look fine in that moment, it doesn't mean we are. That, and it's also important to acknowledge that hypo symptoms aren't universal (check out the question Diabetes UK tweeted this morning). So this week, I'll be joining in the discussion, both online and with my (new) GP.
 
For further information about Hypo Awareness Week, click here to be taken to the Diabetes UK website. Also, you can watch the latest videos by Type 1 Uncut, discussing hypos and hypo hangovers.