It's okay to be selfish

I’ve realised recently that it’s okay to occasionally be selfish. 

I’ve realised that saying yes isn’t always a good thing and that by occasionally saying no I’m taking better care of myself. 

I’ve realised that the activities I enjoy can be difficult to get pleasure from if I don't think about my own needs as well as others.

I’ve realised that comparing myself to others is destructive and can impact on me physically and emotionally... (cont)

The Diabetes UK Professional Conference and Social Media

The Diabetes UK Professional Conference is over and now it’s time to reflect. In my column for The Diabetes Times I wrote about the topic I would be presenting at the conference and how it needed to grow from previous years. It needed to make more of an impact. I think it’s very important that after each talk the audience goes away with something to think about, something they can try to implement in their departments, and I believe that many of them did.

One topic, language, came up during the presentation. That day, language had been discussed via twitter by patients who were discussing the use of the word ‘non-compliant’. It hit a nerve with many people at the conference, patients and Health Care Professionals (HCP's) alike, and luckily the group I was presenting with had a stage to address that problem. In my presentation I made a point of telling the audience that I was labelled as ‘non-compliant’ due to being in DKA so many times - I make a point of mentioning this in all of the talks I do. I was not able (for so many reasons) to manage my diabetes in the way that I needed to, but in no way did that mean I was purposely not complying with rules that had been set for me. A patient who is struggling to manage their diabetes is not a rule breaker, they do not need the added pressure of feeling that they are purposely causing problems for others, they need support and guidance and they need (and very much deserve) respect in the way they are talked to and about. I hope that the use of language continues to improve.

During my session I talked about my journey with diabetes, trying to condense it into a 10 minute presentation, and tried to convey the seriousness of the first 10 years after my diagnosis. However, I didn’t need to tell them how dangerous my habits of not testing my glucose levels or taking my insulin correctly was. The audience was made up of health care professionals, they knew the seriousness of my actions. The way that I used to manage my diabetes shocks many people, myself included, but time and time again I hear about patients who are just like I used to be... HCP's ask me about how I turned things around and my honest answer is by using social media, however I still feel that I chose to gain control far too late. I wish I had done it sooner, I wish it had been suggested to me sooner, and that’s what I hope to get across to HCP's when I talk to them, that a turning point for their patients could be just around the corner.

During my presentation I talked about how my recovery began. For me it was a combined recovery, using face-to-face clinic appointments alongside social media. I think for many HCP's this may sound like a strange combination, or certainly a few years ago it may have, but now I know many people who, like I did, use social media as a part of the diabetes treatment. For so many, thousands in fact, social media plays an important role in not only peer support but also diabetes education, building confidence around living with diabetes, learning to trust and communicate with our health care teams, developing our own knowledge and understanding about the condition and many more aspects. Social media isn’t just about sharing pictures of cats, it’s so much more than just being social, it’s about learning, directing, engaging and developing. The face-to-face appointment aspect has really helped me too – It made me realise what a wonderful, dedicated and passionate health care team we have in Portsmouth. In a funny way it wasn’t until I started to really trust them that I realised how passionate I could be about the condition that had tormented me for such a long time.

The ‘and finally’ part of my talk came with a take home message - although there are thousands of patients who use social media as a part of their diabetes treatment, there are still thousands who don’t. There will be many reasons for this and, as I said during my talk, social media isn’t for everyone, but there will be many patients who can and will benefit from it. Perhaps it would just take that small suggestion, like I had three years ago, to take a look and see what comes of it.

Three years ago, when Partha suggested I set up an account for local patients to connect with one another, I didn’t think it would help my diabetes in the slightest. I really felt that I was a lost cause, however I’ve achieved a lot in the last three years – A reduced HbA1c, dormant retinopathy, confidence in living with diabetes, knowledge of how to avoid complications, feeling able to take control and improve my self-management and perhaps the most important to me is being involved in making changes in how diabetes care is delivered for others. If I had known all of this after my diagnosis, before I took so many wrong turns and ended up in trouble with my health, I would have done things very differently. I would have taken responsibility and had better outcomes and that’s what I hope others can achieve. Like I said, it’s not for everyone, but for some, social media can be one of the best tools they have against diabetes.

I gained 88 new twitter followers during the Diabetes UK Professional Conference. Over half of these are Health Care Professionals… Now I’m excited to see how we can work together on social media for the benefit of patients. Let’s see just how much of an impact we had and which changes have been made at next year’s conference…

Ninjabetic x 

Diabetes is tough

I was prepared for clinic yesterday. I knew what I wanted to say and how I wanted to say it. I had planned to have a serious talk about my diabetes control and management, an honest and open discussion that would provide insight into how I could work with my consultant to get to where I wanted, and needed, to be. I had rehearsed it over and over in my head the night before and in my head the outcomes had been good.

As I sat in the waiting room I flipped my phone over and over in my hands, looking at the new art work on the walls. For that brief moment I felt calm and composed, soaking up the vibrant colours as I felt my heart beat slow down. When I was called in by my DSN I realised I wouldn’t be seeing my consultant that day. No problem – My DSN was always kind, understanding and never judgemental. I was in good hands.

I started to talk. I admitted to letting things slip, pointed out my mistakes and gave my own suggestions for I could rectify them. I was asked how I knew things had slipped, and I realised I didn’t. We tried to get blood for a HbA1c – it didn’t happen. I sat sobbing, as always, whilst the nurse tried to reach a vein before it moved. I felt selfish as I walked back through the busy waiting room. Why should I be crying when every one of these patients is going through the same (if not more) as I am. Why should they see my tear stained face as they sit, probably feeling anxious themselves, waiting for their turn. How selfish of me.

The tears didn’t stop. “Is it the blood test or something else?” I was asked. Soon I was crying harder. I talked and talked, letting everything come out. What I wasn’t doing, what I was doing, why I was choosing to make those decisions, why I’m scared, what my future looked like, what’s stopping me from asking for help. I was asked what I wanted to do next. I didn’t want to do anything. I didn’t want to set any goals, plan for the future or create any expectations. I just wanted someone, somewhere, to be aware for when I am ready. I left my DSNs office and in the corridor were a group of consultants, amongst them was my consultant. I looked at him with my mascara stained eyes and then looked at the floor. One of the things I hate most about diabetes is that it makes me feel I’ve let him down. People will say this is a silly but it’s how I feel.

Later that night I had a text. “Everything ok? Clinic looked tough?”

Everything’s not ok but clinic isn’t tough. Clinic is a safe place, it does its job and more. It’s diabetes that’s tough. 

Ninjabetic x 

Basal Check Time

This is a joint blog between myself and Pete Davies (@swelldiabetes), a Diabetes and Endocrine Consultant from Sandwell. Pete is always keen to engage with patients and listen to their ideas about how diabetes care and self-management can improve. He wants to find ways to make basal testing easier and more enjoyable for people, so we gathered our thoughts on the subject and put them on paper. 

What Pete and I are hoping to do is to set up a live basal test via social media. We don't have the logistics just yet, but we do have a few ideas in the pipeline, so watch this space.

We would appreciate it if you could comment at the bottom of this blog (or on facebook/twitter) with the 1 thing you find difficult about basal testing. It'll give us some ideas on how we can make basal testing easier for you!

We hope you enjoy our blog :) 

Pete's blog

Good ideas can come at any time & I feel at my most creative when I am with groups of PWD (People With Diabetes). Last week we had a DAFNE course for insulin pump users. One of the games us educators like to play is to tot-up the number of years of D experience in the room. 

6 PWD. 

136 years experience of living with diabetes.

Humbling.

We talked about loads of things & they had plenty of questions. These days I always take the opportunity to do a gentle sales pitch on social media as a means for getting on-going support, practical and emotional too. The reception can be mixed, this group seemed quite open to the idea. One person was already using Twitter, two others use Facebook. None of them presently use it to get support with their diabetes.

HCPs a have a strong belief that regular basal checks help PWD keep their pump therapy on course. At the same time, realists accept that it's rather like those stretches we know we should do after exercise, those five pieces of fruit and vegetables we know we should eat each day... It all sounds so easy and nice, in principle…

During our conversation, my sales pitch about Twitter and about the need to promote easier basal checks seemed to meld together into a Dragon's Den pitch:

Group Twitter chats could be just what is needed to help support PWD to complete their basal checks and to make the right to changes to their basal insulin doses when they are armed with good information.

So PWD on #ourD & #doc, I'm looking for £100,000 for a 30% stake my business... 

What's that you say? Have I registered my intellectual property??  

Pete (@swelldiabetes) 

My blog

As Pete mentioned, basal tests are something that people with diabetes *should* do, but sometimes... don't. We each have our reasons for why we do or don't chose to follow the 'rules' or advice that our HCPs (Health Care Professionals) give us, and of course we should all be free to make our own decisions, but perhaps there is a way that basal testing could be easier? Maybe even fun? Would that encourage people to basal test for our own benefit AND keep our HCPs happy?

I can count on both hands the amount of times I've done basal testing, and since starting on the  pump I've really slacked doing it only once in the last year. Some of my reasons for why I haven't done as much as I perhaps should have are:

Timing - Is there ever a good time to basal test? I'm constantly on the go, whether I'm at Uni, studying in my own time, working, looking after my patients on placement etc, I often find that my mind is on other things. It's not that my health isn't as important, but a lot of the time I need to pay full attention to what I'm doing and give it all the energy I have. I like to have a quiet day to do basal testing and that in itself is a very rare thing for me.

Hypos - They nearly always seem to crop up when basal testing is about to commence! Obviously if a hypo occurs during a basal test this indicates that my background insulin may be too high and allows for changes to be made, but 9/10 if a hypo's coming it comes before the test starts. Then, once the hypo has been treated we have to wait again until we can start the basal test again... what if there isn't time to do it again?!

Food - I don't want to be hungry for 4-6 hours! It's as simple as that. If I do basal tests I tend to do it on a day off and days off are for relaxing, enjoying the things that I can't enjoy whilst I'm at work/Uni/placement and charging around at 100mph. Abstaining from food is the last thing I want to do.

Rules - What are they exactly? One HCP will tell me one thing, another will tell me something different. Can we eat zero carb food whilst basal testing? How long do we wait after a hypo to start the basal test again? Which blood glucose level should we start the basal test at? What happens if I happen to be rushing around that morning/afternoon/evening and it affects my levels? So many questions... and so many different answers.