My twitter feed may imply the opposite but as it turns out I do not like hating my health care professionals. I recognise they do an incredible job where they often get little reward or recognition. But the thing is I fear this recognition on my part has led to me allowing them too much leeway in situations that do not deserve it.
I got my insulin pump in 2013. August to be specific. I expected a lot more from it then I got.
I quickly put it down to my brittle diabetes.
At each hospital appointment it was expected that I knew how to fix things and so I would. My hba1c was also given as a sign that everything was ok. Looking back I realise I did not fight hard enough to be seen more often….even if the idea terrified me. I had the best HBA1Cs of my life when signed off unfit to work or study or generally leave my house. Hypo and Hyper with a few decent results mixed on = ‘look how good you are doing!’ Um. No.
My results on the meter showed everything was a mess but somehow it feels that if the HBA1c is ok and therefore imminent danger is not there…you are sent to your nurse.
I have had amazing DSNs and horrendous ones. Some of the bad ones were lack of people skills and some were lack of knowledge. It is always hard to challenge the system and go ‘yeah but?’. So often I think diabetics just drop out of the system. We don’t book another clinic appointment. We just soldier on.
Often we then find that health boards hold us to random in regards to treatment. ‘Come see this nurse who does not know, understand or engage with you before you get X insulin, new tech, pump ect’.
It is bullshit.
I had to do my own research and print of sheets of evidence to present to people at clinic before they considered that yeah maybe I was not lying about eating or thinking things and actually something weird was going on. We now call it dawn phenomenon but for years I was the ‘bad diabetic’ who ‘did not conform’ and needed to ‘get it together’ and ‘stop lying’.
I have spent the last six years being accused of not knowing how to put a pump site in. As if multiple demonstrations, youtube videos and diagrams failed to penetrate my brain. No. Turns out I have an allergy to teflon, a plastic used in many insulin pump connections. After throwing my toys out of the pram I was assigned a new nurse who tested this by giving me steel, rather than plastic ‘sets’, and my control has done a total 180.
But why did this take 6 years?
Why do doctors and nurses and other HCPs assume we are failing in our own treatment?
I know I will have my clinic appoint in a couple of weeks and that is not enough time for my steel canulas to safe my blood test. I will be informing anyone who questions me that I have not made any mistakes but the system absolutely has. Whatever HBA1c I get is a miracle and anyone that tries to come at me for it will hear me.