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!  

Psychosocial Support.

Psychosocial support and diabetes is a topic that's always interested me, as I very much believe that it is overlooked. So when I saw that Zoe Scott, founder of Hedgie Pricks Diabetes, was lined up to host an Our Diabetes chat on this very topic, I was excited...and then bummed out when I realised it was on a night I wouldn't be able to participate in the chat. However, thinking about it now, I know I wouldn't have been able to keep my responses to the Twitter-limit of 140 characters!

1. Are there times when diabetes gets you down or anxious? Are there particular triggers?

I'd be lying if I said there weren't times when diabetes gets me down and anxious. I panic when my blood sugar drops and I can't get it back up within range. I also panic when my blood sugar is high and won't come down, especially after that one time I ended up in hospital, not remembering anything. I have pity parties, where I feel sorry for myself, and "grieve" the life I had before diabetes. 

2. Do you feel you get the emotional/psychological support you need from your HCPs?

Yes, I do. I feel like I've been incredibly lucky with my health care team, and I worry about potentially leaving them if/when I move in the future. I'm scared that I won't have the same level of help and support. 

3. If you were given a questionnaire by your HCP would feel able to answer it honestly or would you lie with some questions?

I would like to think I'd answer it honestly, but thinking about times when I've been down in the past, I actually don't think I would. When I've been down before, it's not been something I've wanted other people to know about. I'd pretend to be fine and happy, and then when "behind closed doors" I'd let everything go. Knowing that, I think I'd lie if given a questionnaire, not wanting to admit to others that I'm struggling. It's a character flaw, one that I'm working on.

4. Does your team take your concerns seriously?

Yes, always have, and I believe they always will. And I hope wherever my care moves to in the future, I'm shown the same level of support. 

5. Do you know where you can get help for how you feel? 

I know that I can turn to the DOC - there's something about talking to other people who 100% get it. But, of course, if I really felt there was cause for concern, or my family or friends did, I'd definitely talk to my health care professionals, no matter how difficult it would be for me to do so. The DOC is great for emotional support, but there's a difference between needing emotional support after a bad day or a bout of diabetes burnout, and needing further (professional) help for some more deeply-rooted emotional problems.  

Introducing Diabetes.

Tuesday night's Our Diabetes chat was hosted by Kate and was all about how we introduce our diabetes to others. As I was taking part from the Our Diabetes Twitter account, I wasn't able to truly participate, so instead I'm answering the questions in good, ol' blog format.

1. Do you struggle to tell people about your diabetes? E.G. friends, work, potential partners, and if so, why?

In short, yes. I want to be seen as "Vicki" not "Vicki-The-Person-With-Diabetes", but with the blood sugar tests, wearing an insulin pump, and before that, injecting insulin, it's a lot to ask people to see past. On the whole, I've been incredibly lucky with my friends since diagnosis, but I still fear it's too much to take in/handle. 

2. Have you ever withheld the fact you have diabetes? Were there any consequences of doing this?

Again...yes. It was shortly after I was diagnosed. All my friends at school knew, my family, my teachers...all talk was about my retired pancreas. I had this other group of friends, outside of school, who I didn't see as frequently, that had no idea I'd been ill, bar two of them who were (are) family friends. When we all met up, they asked if I wanted my diabetes made known, and I said no. I wanted to be "Vicki" and I didn't want talk to be about diabetes. They respected that decision, and I had such a great time. 

The biggest consequence of doing that, however, was then disclosing further down the line. Well...more disclosing how long I'd had diabetes for...that didn't go down so well. But I explained the reasoning, and, although effed off I didn't tell them from the start, they could also see my side. They're a very understanding bunch!

3. Have you experienced any bad reactions from telling someone or a company, e.g. a gym, that you have diabetes?

I once had someone tell me that they liked me as a person, but didn't like my diabetes. I was really upset by that. Really upset. Diabetes is my biggest insecurity because it's the one part about me that I cannot change, so that comment really got under my skin, and I started questioning how "okay" people were with me doing finger-prick tests and, at the time, injecting insulin. It wasn't a good mindset to be in.

4. Have you ever run BGs higher than normal to avoid a hypo situation?

Yes, I have, primarily when I'm working with children or looking after my godson. I don't like running my blood sugar higher than normal, but the thought of having a low blood sugar when I'm responsible for others...not okay with that!

5. Do you have any tips on how best to tell people?

In spite of my own fears when it comes to telling people about my diabetes, I truly do believe that honesty is the best policy, if for nothing but my own safety. I'd say keep explanations simple, but if asked questions, answer them honestly.

The Our Diabetes Tweet Chats take place every Tuesday at 8pm on Twitter using the hashtag #ourd. Click here to check out the Our Diabetes website for more information.

DUK: Thank You!

In case you missed it, Tuesday's Our Diabetes chat was hosted by Diabetes UK and they were looking for Feedback on a campaign they called "Choccy Barred". The concept was that people gave up chocolate to fundraise for DUK. 

Image taken from Google Images.

The community's views were strong, and I can understand why. I actually had a blog post written myself about it and went to publish when I saw the Diabetes UK had withdrawn the idea (under picture, part "from Diabetes UK")

I was against it. I'm all for fundraising, and I understood the concept of the "Choccy Barred" campaign - it was the name that grated on me. Given that people with diabetes are often faced with comments regarding their diabetes and diet, a campaign name such as that wasn't exactly going to help!

However, like I've said, the idea has been withdrawn. So instead, I'd like to say this:

People at Diabetes UK, thank you! Not only did you take to the community to ask for our thoughts via a tweetchat, but you also listened to what "we" had to say, and, I can't speak for the community as a whole, but that means a lot to me.

So, again, thank you!

A Blog About Blogging.

Image taken from Google Images.

Last night, I hosted the weekly Our Diabetes chat and the subject was blogging. With Diabetes Blog Week coming up, the timing of the chat was pretty perfect. The questions asked were:

1. Do you blog? Where?

2. Why do you blog? (Or why not?)

3. Do you like reading other blogs? Why?

4. D-blog week is coming up - will you be writing and/or reading?

So many "new" blogs (new to me, anyway) were brought to my attention, and it was great to hear what people got out of blogs and the reasons behind deciding to blog. I had a lot of fun hosting the chat, and was excited when blogs I hadn't discovered were being brought to my attention.

I've said it before, and I'll say it again: blogging is my diabetes therapy. I can come here and write out my frustrations, my victories, my good days and my bad ones. For me, it's not about page views and followers - I blog first and foremost for me. The fact that someone might read or comment is just a huge bonus.

As for reading other diabetes blogs? Yes, yes I do. Not just by people with diabetes, but their caregivers and health care professionals too. They all provide different stories, different perspectives and act as a constant reminder that I'm not the only one in this.

And, finally, diabetes blog week: yes, I will be taking part. I participated last year, and had a lot of fun in doing it, and discovered a ton of other blogs, some of which I now read regularly. If you don't write a blog, but are considering it (as many who were involved in the chat last night were), diabetes blog week is great time to start, sign ups for which start on Monday (May 5th). 

I think I've managed to find all the blogs that were mentioned during last night's chat and will update my list of diabetes blogs in due course. If your blog isn't on there and you'd like it to be, either leave me a comment or send me an email vickisnotebookblog[at]gmail[dot]com.

Mix It Up.

Image taken from Google Images.

This week's Our Diabetes chat was incredibly busy, and I struggled to keep up and answer all the questions, but there were some great things being said! The chat was hosted by the We Nurses community and the topic was "working in partnership in online spaces". Here are my thoughts on what was discussed. 

Can we talk in this space?

I think we can. I hope we can! I personally like connecting with healthcare professionals (HCPs): I like to read about the problems they face in treating patients and how the NHS as a whole works. I like understanding why services are the way they are and why treatments are available in some areas of the country and not others.

What about HCP/patient confidentiality?

I understand that HCPs must have to be a lot more careful with what they say, where as patients can pretty much say what they like. But if patients are willing to openly share online, why shouldn't HCPs listen to what they're saying and learn from it?!

What is the future of social media and patient/nurse interaction?

I would love it if patients and nurses/HCPs in general could use social media to learn from each other. I think it's important to recognise that patients use social media for support: sharing experiences, connecting with people who understand, collaborating on ideas. Personally, I don't want social media becoming the place where I get healthcare advice: for that, I go to my endocrinologist, my DSN, my GP, but for emotional support I turn to the diabetes online community.

Should HCPs recommend groups like #ourd?

I think there's more to it than just recommending such communities. I think it's also important to promote "safe" online discussions, but, in short, YES! The way I see it, if HCPs are happy to reccommend offline support networks, why not online ones? At the end of the day, if people don't want to use them, they won't, but what's the harm in recommending them? For me, finding the diabetes online community has been integral to my emotional wellbeing, and when I meet people with diabetes, I tell them about it and what I've gained from it. 

I truly believe that HCPs and patients can learn from each other, and I think online communities provide a great space for us to do that. So let's keep the connections going and educating one another!

Meters: Accuracy And Choice.

Unfortunately, I had to miss this week's Our Diabetes tweet chat due to District Meeting with Girlguiding, and the topic was "Meters: Accuracy and Choice", which is such a good topic! This week, it was hosted by Louise after she wrote a blog post earlier this month titled "Ready, steady, go prick your fingers! (In the name of research)". Seeing as I couldn't take part in the chat, I'm going to answer the questions on here, as it really is a big topic within the DOC right now. That, and you need far more many characters than the stipulated 140 on Twitter!

(N.B. I am not being paid to endorse any of the brands/companies/apps etc mentioned within this post!)

Image taken from Google Images.

1. What do you like about your meter?

I use an Accu-Chek Aviva Expert, and I like it, I do, but I'm a One Touch girl, and I really, really loved the One Touch meters I've had in the past. The reason I have the Expert is because of the 'bolus advice' function it has built in - it is such a useful function that I use constantly. And I can programme it to increase my insulin by x% on sick days or decrease it on days I go to the gym meaning I don't have to do the math! Awesome! Come on, One Touch! Bring out a meter that does the same thing!

2. How often do you check your blood glucose levels?

There are so many variables to this question. Standard day, probably 7 times. On a day I go to the gym, however, more. Sick days, more. And on days I'm working at school and then have Brownies, even more! It really does depend on what I'm doing and how I'm feeling!

3. How do you record your blood glucose levels?

On my meter - the Expert allows you to log insulin doses as well as saves your blood glucose tests. There are a lot of apps around too to log information. My favourite at present is mySugr.

4. Do you trust your glucose meter to give you accurate results?

This is a hard question. Before I moved to the Expert meter, I'd only ever had One Touch meters, so when changing to the Accu-Chek, I did double-check readings on my 'old' One Touch (when you use something day-in-day-out, you get attached!) and they were fairly similar, so I never really questioned it further. Not sure why I trusted my One Touch so much though? It was just the first meter I was given, and when you're newly diagnosed I guess you do just trust that it will give you the right readings!

5. Are testing strips freely available for your chosen meter?

I've recently had problems with getting test strips on prescription, but I'm one of the lucky ones who had the issue resolved quickly. But there are others that are still struggling. The way I see it, test strips are cheaper than having to fund treatments for poorly controlled diabetes. Test strips are integral to diabetes management, but by reducing the amount we can have, you're reducing the number of times we can check our blood glucose to then make decisions regarding insulin dosing and food, which can cause problems in the long run. No brainer if you ask me!

6. Does checking your blood glucose levels have an affect on your attitude towards your diabetes?

Yes, I think it does. Don't get me wrong, it's not like I enjoy checking my blood glucose levels. I don't like pricking my finger countless times a day to get blood. But I like to know where I'm at. Knowing my glucose level makes me feel "safe": it helps me to make decisions that then allow me to get to where I want to go...if that makes any sense?!