Show me your pump

#showmeyourpump is making the news after Sierra Sandison proudly strutted her stuff and showed off her insulin pump during the Miss Idaho competition. Now people with diabetes all over the world are doing the same and posting pictures of themselves wearing their insulin pumps on facebook, twitter, instagram and more. Not only is the hashtag going viral, but at the same time it's raising awareness for Type 1 diabetes, inspiring others to feel more confident with their insulin pumps, and encouraging people to try insulin pump therapy. 

I'm not one to be shy about getting my pump out and have been posting pictures of my beloved pump (Iain) on twitter and facebook from day one! Nor should I be shy about it... In fact, I love any opportunity to show it off, give a demonstration and answer any questions people have. Some people may think it's strange, but I'm proud to have a portable pancreas - It's far better than my original pancreas. It's an expensive bit of kit that many people want but aren't able to have, for lots of reasons, and it has given me the chance to have more freedom when it comes to living life with diabetes. 

So here are a few pictures from my facebook page of me, proudly showing off my pump!

The 4Ts - After diagnosis

The 4Ts campaign was launched by Diabetes UK in order to make people aware of the signs of undiagnosed Diabetes. Knowing these signs could prevent a person from going into diabetic ketoacidosis, which can be fatal.  

The signs to look out for are; 

• Thirst
• Toilet
• Thinner
• Tired

You can read more on this campaign here 

However it's important for people to recognise that the symptoms that present at diagnosis don't always end there. 11 years after being diagnosed I still experience these symptoms.

I can only share my personal reasons for why this has happened in the past and occasionally now, and hopefully by sharing them it may give a little insight into how we can help and support others who are displaying the 4Ts.

Here are a few of mine:

Education

A lack of diabetes education can lead to all sorts of difficulties and, for some, complications. Diabetes is a life long learning process and educations needs to start from the very beginning. Structured education is incredibly helpful as the next step from basic education, and it allows us to think of strategies to adapt to our own lives... Being given a leaflet some insulin pens and a blood glucose meter, then being sent on your merry way... Not so helpful. 

Here are a few educational tools that would have made a big difference to my diabetes management:

Carb counting - Is everyone taught how to carb count from the start? Well no, they aren't, but how long is it before people are informed of this amazing self management tool? 

For me... 9 years. 

It wasn't long until I was put on a basal bolus regime, and for 9 years I was told to take exactly the same amount of insulin 4 times a day and to avoid sugary food and drinks - that was all. I didn't use the internet or social media to educate myself about diabetes until 2 years ago; otherwise I'm sure I would have discovered carb counting for myself. I relied on my health professionals to give me the information I needed to control my blood sugars, but from the start it wasn't delivered. 

And then one day I was told about a wonderful educational programme (JIGSAW) that not only taught me how to carb count, but almost everything else I needed to know about my diabetes. As insightful and helpful as this was I couldn't help but feel a little sad and disappointed that I hadn't been offered it sooner. I understand that staff are stretched, money is tight and time is precious... but for 9 years...

Corrective doses - I had no idea that I could take a little more insulin, without food, if my blood sugars were too high. On being told this 2 years ago I was shocked... Can I really take insulin without food? It was like I was being exposed to a whole new world... My blood sugars improved dramatically after this discovery. Combined with being able to carb count, I felt like a whole new person.

Rotate injection sites - Again, I didn't know this until 2 years ago! 9 years of injecting into my legs caused hard lumps and extra fat deposits to develop. These lumps change the way insulin is absorbed, making it more difficult to keep your blood sugars within target. For me this also contributed to high blood sugars, I just didn't know it at the time. 

Needle Phobia

Pre-diagnosis I disliked needles, but post-diagnosis I feared them, to the point that stopped injecting. A phobia is an irrational fear of a particular situation or object and I avoided both in any way I could. 

I was labelled as 'non compliant' even though I had admitted my fear of needles on a number of occasions in appointments. I made no secret of why I didn't get my hba1c done, but never was there a suggestion made to help me around this problem. To this day none of my health professionals have even approached the subject and I was even told by one only a few months ago; "You do not have a fear of needles".

I accepted that I wasn't going to be given help on this one, so I found my own way around it... I studied a psychology module about phobias in patients - I chose to concentrate on needle phobia and from this I found my own self help strategies.

Stress 

This one's a pain in the pancreas. Stress can make a person do some strange things, but it can also make blood sugars do some equally strange things. 

When we're stressed (physically or emotionally) our stress hormones kick and raise our blood sugars in order to help us deal with the situation. However for those of us who have diabetes, bringing those blood sugars down can be tricky. 

Recent prolonged stress has left me with the 4Ts - I couldn't remove the stressor, therefore I was/am tired, thirsty, thinner and going to the toilet more often. Whilst it was happening no matter what I did to try to bring my blood sugars down they would not budge.

Stress can also affect appetites, causing blood sugars to go off target. I lost my appetite for weeks, it came back with a vengeance (comfort eating) and then off it went again. 

On seeing my consultant last week I realised that I should have gone to him much sooner than I did. I tried my best to adjust my regime and combat the high blood sugars, but being unsuccessful only added to the problem. A few comforting words, an understanding wink and a review of my sugars has helped immensely. 

Control and Rebellion

Control - This is a strange one for me - Being in good control of blood sugars, diet, exercise, and overall diabetes management can be incredibly empowering and rewarding. 

However control can also be a form of protection from hurt and pain that may have been experienced - usually it's reinforcing the problem that has caused it, and therefore not protecting us from it. Not testing blood sugars and not injecting can be forms of control in people's lives.

This leads me to...

Rebellion - Not a cry for help as some would think. I was once described as a covert rebel. I would sit and smile sweetly in appointments, but secretly I was thinking of different directions to take, escape routes and ways to cheat my clever health professionals. I didn't want to submit to their authority. In the past I'd only experienced rushed appointments with little or no change in their structure, leaving me with little or no change in myself. I wasn't given any reason to feel wanted... I felt I was simply there as a hospital number.

And today...

Today things are different... I can see the mistakes that I made and the mistakes that were made with regards to my treatment. I can see the different options that are available to me if I open my eyes and ears. I can see that if I want something I have to go out there and get it for myself... but I can also see others who are still struggling to get what they need for many reasons, and as I said before; hopefully by sharing our experiences and showing understanding we can help and support them through those 4Ts.

Please feel free to add any of your own reasons for why you still experience the 4Ts and how you have been helped/helped yourself in overcoming them.

Ninja x

DKA - Crash Bang Wallop

Perhaps I tempted fate 4 weeks ago with my proud celebration of going 2 years without DKA (diabetic ketoacidosis). Maybe I should have prepared better for when it hit again. I just didn't expect it so soon... not when I had everything under control.

 

It all happened so suddenly - One minute I was in bed, listening to friends drunkenly singing along to a guitar downstairs as I drifted off to sleep, the next I was stumbling around getting dressed and launching myself out of my partner’s house, clutching my stomach and telling him not to stop me from leaving.

 

Somehow I made it home and crawled to the bathroom on the ground floor. My mum slept soundly two floors above me and couldn’t hear me vomiting crying or reassuring myself that the sickness would pass. At that stage DKA hadn’t crossed my mind – I thought it was a stomach bug, but as the hours went by the vomiting continued. 5, 10, 15, 20 + times… each time I was feeling more dehydrated, finding it harder to catch my breath and I was becoming weaker.

 

At 6am I accepted that I couldn’t get through this on my own (even with Iain the pump chugging away). I fell into my mum’s room and she immediately called an ambulance.

The next 24 hours were a blur – I went to A&E and was taken to resus so I could have my own nurse. The intensive care team came to asses me and made plans for another move.

On admission I was leaning towards DKA - Blood sugars were 20.4 ketones were 3.5 and PH levels were 7.33 However IV fluids and insulin were not correcting my levels and after an hour or so this resulted in sugars of 30, ketones of 4.9 and PH levels of 7.21 - I was later told this was because the first response who had initially cannulated me had some difficulty, leading to fluid collecting in the tissue of my hand and arm instead of doing its job sufficiently, causing cellulitis – bring on the Simpson style chubbiness and days of IV antibiotics to correct it. 

 

Cannula number 2 of 6

 

One of my biggest worries was what to do with Iain the pump. I’d only had it for just over 3 weeks and I didn’t know what to do regarding sickness and temp basal rates (TBR) yet. I’d increased the TBR to 130% the night I became ill (this was a guesstimate) and I’d left it at that rate ever since. No one that was looking after me knew what to do with an insulin pump, but what worried me the most was that I wasn’t given any direction with it at all. Should I leave it on or take it off? No one knew! A sliding scale had been set up with 9 units of insulin an hour and Iain was still pumping away at 130%

 

Dangerous? Yes I’m sure it was but I was barely conscious and couldn’t make the decision for myself. The staff were concerned, I could see that, but I could also see that they weren’t confident in giving me pump advice – it was a treatment that they didn’t come across often.

 

After having 13 litres of IV fluids pumped through me I woke up the next day to sugars of 5.5 and I turned Iain’s TBR down to 50% (again a guess) as my sliding scale was still up. My diabetes team came to see me and advised me to stop the pump. Hurrah for people who knew about pumps!

My arms & hands took a needle battering so the Drs had to cannulate my feet instead!! Ouch!!

 

The next day I was told that I was out of DKA but I was still acidotic and as I was still vomiting the sliding scale stayed for a further 4 days. I spent the rest of my time on a ward and I was told that I had food poisoning. I was completely exhausted and I felt worse than I ever had done with DKA – not just physically but emotionally. I barely spoke to anyone but was comforted by the fact that Partha (a consultant from my d team) came to see me every day. Although I haven’t been under his care for 2 years now he still came by every morning and checked on me, he sat at the end of my bed when I had my head in my hands and tears in my eyes, he told me that it wasn’t my fault and that I would get better again… It was nice to get that extra mile… that verbal hug.

 

I’m home now and feeling a lot better than I did. I ate solid food for the first time yesterday but I still feel like my tummy has been run over… reversed on and run over again. Iain the pump is happily pumping away and my sugars have settled nicely back into their target of 5-10.

 

My mood is lifting as I’m getting better but I have the worry of DKA’s on my mind now. Call me naive but I thought this would stop… now that I’m looking after myself I thought I’d seen the end of my hospital admissions. I thought about giving up... I felt that I'd let myself down by being sick... let my diabetes team down... I'd become an unplanned admission statistic that they try so hard to combat. Then I realised how much I'd be letting myself and others down if I didn't get back up, dust myself off and try again. There's always something to come back and fight for, even if I couldn't see it at the time.

Ninjabetic x