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TV’s Dr Gregory House repeatedly says ‘Everybody lies’. He believes that doctors can’t and shouldn’t believe what their patients are telling them because they will omit key points about their health – intentionally or not. Diabetes makes us liars. Not big liars, but it’s easy to tell a white lie here and there.
‘I have NO idea why my BGL is 32.5’ (conveniently forgetting two serves of cheesecake)
‘My last A1c was 7.3%’ (actually, it was 8.3%, but what’s one percentage point between friends?)
‘Of course I bolused for lunch!’
….. etc etc etc
These are small lies and in the scheme of things, really don’t matter. But we do need to ask ourselves, who are we really lying to and why do we feel the need to bend the truth?
I have been seeing the same endo for almost 12 years. After three and a half years of endo-hopping and endo-shopping, I finally found ‘the one’. I admit – the not-so-great relationships with the previous endos where partly my fault. I found them judgemental and I dealt with that by not being completely honest. I didn’t want the admonishing looks or the exasperated sighs from them when they saw my above target numbers.
So, I made things up.
This did me no favours and did nothing to foster a relationship based on trust with them. The relationships were doomed from the start when I think about it. I’m sure they knew that I was lying (they were pretty stupid if they didn’t!) and it was pretty disrespectful of me to think that they were dumb enough to believe what I was saying.
When I started seeing my current endo I made a promise to myself: I would tell her the truth. Now, the fact that she isn’t at all judgemental, is kind and caring and has the best communication skills of any health professional I’ve ever met certainly has helped me keep that promise. Her response to me saying ‘I’m over this and really don’t care about diabetes anymore’ is not head shaking, tut-tutting and telling me off. She wants to know why, how she can help and to know what I believe I can manage to do that will make ME happy. She makes me want to be honest and tell it like it is.
And I hope that because it’s always been that way that she doesn’t doubt what I am saying. I hope she knows that it’s the truth when I say things have been tough, or that I really don’t know why my sugars have been all over the place, or that I really have been checking my BGLs six times a day. I hope that because our relationship started with honesty she knows she can trust what I say as the truth and never doubts me.
A relationship with your health professional that is based on trust, honesty and just telling the bloody truth is rewarding. Starting off that way is critically important. I think that when you feel you can be that way – and it does open you up to feeling vulnerable – that you have found the right match.
But if you start with lies, there is probably no chance that either of you will be getting what you need from the relationship. If you feel you need to lie to them, ask yourself why. Equally, if they know that you are not being honest with them, they need to wonder why that’s the case. No one wins when we are dishonest about our diabetes.
Dr House may believe that everybody lies, but I believe we can start with honesty. My relationship with my endo is rewarding for me because that is how we started. I trust her implicitly and she has no reason to doubt me. It was a good starting point 12 years ago. And it’s still working today.
I’ll take any excuse to look at Hugh Laurie!
It’s Diabetes Blog Week thanks to the very clever Karen Graffeo at Bitter~Sweet Diabetes. This week, over 130 diabetes bloggers from all over the world are taking part and sharing stories about their lives with diabetes. This is the second year I’ve participated and I can’t wait to read what everyone else is up to. I’m in for a lot of very late nights! So, here we go with the topic of Monday……
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your daily life with diabetes? On the other hand, what do you hope they don’t see?
I have frequently commented on how lucky I am to have a health care team that consists of some pretty amazing people. My endo actually does read my blog and recommends it to not only other people with diabetes, but also to endos-in-training. I completely understand how unusual this is, but it makes me realise just how fortunate I am to have a HCP who has some insight into my real-life with diabetes. Or at least, the things I’m prepared to share!
So, because of that, I’m going to concentrate on the second part of today’s topic – the things we don’t want them to see.
And the truth is, there’s nothing I don’t want them to see. I could say that I’d prefer they didn’t know about the days where my meter doesn’t see the light of day as it languishes around the bottom of my bag; or the days where my CGM graph looks like a mountain range; then there are the days where I know I should do a line change, but can’t be bothered and just deal with the higher BGLs and the angrier and redder cannula site; oh, and the culinary delightful days where my total nutritional intake consists of three coffees, a jam doughnut and a piece of toast with Nutella.
But I believe that this may be called life. And it’s important that they know these days are kind of typical! I am not perfect in any aspect of my life, so why should I pretend to be when it comes to my diabetes? And why should my HCPs be presented with only the stuff I do ‘right’?
I want my HCPs to see real-life with diabetes; which is basically real life. With diabetes sprinkled on top! We all have so much more going on. Diabetes? Of course it’s a part of me, but it needs to fit in with the rest of my life. And for me, that’s one of the most difficult things about life with diabetes. How do I manage to do the things I’d like to do to feel healthy, strong and well but keep things in perspective?
Actually, perhaps that’s one of things I’d like HCPs to see and know – I’m trying. Each and every day I’m trying. And that is more than enough!
Follow Diabetes Blog Week on Twitter by searching the #DBlogWeek tag.
This is the tale of the time I took myself of to Accident and Emergency (A&E). This is not a decision I take lightly as there are a million things I’d rather do. Like saw off my own leg, puncture an eardrum or attend a meeting of an anti-vax conspiracy club. But I’m writing about it because it was a crap experience all around and I’m interested to hear how others have dealt with similar situations.
So, here is the good thing about having type 1 diabetes. I walk into a heaving A&E waiting room. There is blood (the guy in the corner holding his head), guts (a woman near the front throwing up hers), tears (the old woman with her daughter) and silence (most of the other people). I tell the triage nurse the situation which sounded something like I have type 1 diabetes, I have been vomiting for the last three hours, I have ketones of 4.8 and my last BGL was 12.8mmol/l. The triage nurse takes one look at me and opens the door to let me in. Like it’s 1991 and I have a gold medallion to the Underground nightclub. Straight into the VIP room!
Unfortunately, this VIP room is lit with unflattering lighting and instead of comfy lounges I lie on a trolley. I am seen by a couple of brilliant nurses who put in an IV line and ask sensible questions and say sensible things like ‘Of course you can check your own BGL. Would you mind telling us what it is when you do it?’ I have two new BFFs and I want to take them out for ice cream – perhaps I’ll wait until the ketones have cleared, though. I tell them that, according to my sick day protocol, I have upped the basal rate on my pump and have given myself a correction bolus which is already working as my BGL is now down to a stellar 7.6mmol/l. Brilliant BFF nurse #1 says ‘Well, obviously your protocol is working. Are you happy to check again when the doctor comes in and let him/her know how things are going?’
Emergency doctor comes in after a mere 25 minutes (seriously VIP) and starts asking me what’s going on. I repeat the story, report that I’ve just checked my BGL again and I’m down to 6.9mmol/l and he starts by asking the usual questions about diabetes starting with ‘How’s your diabetes’. I never know how to answer that question. ‘Um, good thanks. How’s your father?’
The next thing he says is ‘We are going to need to disconnect your pump’ to which I respond, ‘That’s not going to happen’. He looks surprised and repeats a little louder what he said. This time I answer with ‘Not an option. Come up with another idea’. Now, I know that I am a nightmare patient. I know that at this point in time the doctor was wishing that I was actually unconscious. But I also knew that my pump was working (see: BGL dropping at sensible rate for proof). I also know that I was polite. Assertive; but polite.
It was then I summoned the immortal words of one of the presenters from a Type 1 in the City event and said ‘I would like to see the endocrinology registrar. Now. Please.’ Trump card! It’s kind of like lawyer-ing up!
The endocrinology registrar has much more of an idea until this question came out ‘What’s your blood sugar usually?’ Huh? Usually when? At what time? When I’ve done what? When I’m feeling how?
How is that a question? There is no answer. My blood sugar is usually variable. That’s called diabetes.
What happened next was me refusing to disconnect my pump (again) followed by a demand (from me) that the registrar contact my endocrinologist, which she really didn’t want to do. I held my ground and promised that I would disconnect my pump if recommended by my endo.
Five minutes later, the registrar returned to my room, muttered that the pump could stay connected and then she left. I didn’t see her again. I fell back against the pillow, exhausted, emotional and, despite getting my own way, I felt defeated.
I am sometimes accused of making diabetes look easy. It’s not. And when something like this happens, it reminds me just how difficult it is. The outcome of my visit was rehydration, blood tests to check all sorts of levels, monitoring of ketones (which were gone in about three hours) and then I was sent home. Mind you – I did tell the endocrine registrar (much to her astonishment) that I was leaving at 6.30pm, so she only had until then to get me sorted. (The reason for this was that I had to emcee a diabetes information session at the hospital’s conference centre.)
So, apart from five hours in A&E, not too much of an inconvenience.
But the aftermath hit me like a lead balloon. Firstly, I rather arrogantly was upset that I had found myself in that position. Gastro leading to ketones and dehydration is not the most unusual thing in the world, so I’m not sure why I should think I’m above it all. I’m not.
The second thing that upset me is this, (and again, I hope this doesn’t make me sound arrogant). If I have to battle so much at a relatively easy visit to A&E – if I have to pull every trick to ensure that I get what I want the way I want it, how do people who don’t have the same understanding of the system manage? The people who don’t know the tricks. Surely being heard is a basic right in circumstances like these.
I need someone to explain to me how it is possible that it’s OK that every minute of every day I am the one who makes all my own diabetes decisions and yet the minute I walk through the doors of a hospital I am not equipped to do so.
Do you have any experiences in A&E that leave you feeling a little cold? How have you dealt with them?
Diabetogenic 