On being a patient, dealing with eye injuries and collaborating in diabetes

Do you ever get those “ho hum” days? The ones where you feel just a little bit out of kilter? You don’t really know what it is, can’t place a finger on it, but the shine is not there? Today is one of those days for me. I think it has to do with getting stabbed in the eye with a sharp yukka plant on Sunday and being unwell with this injury all week, followed by a big think tank day at work yesterday and today, trying to get back into a normal routine when a whole week has passed that I feel like I have missed. And the fact I could not exercise all week as I know this now gives me a lot of positive mood chemicals.

There I was on Sunday, mid stream of a planned gardening day, followed by some work on my personal blog and my PhD, finishing with a bit of research for our posts here; and finally the grand final of the Block Sky High (of which I am a definite blockhead 🙂 ). Sadly it became a world of pain, a trip to an after hours doctor, more world of pain, a lot of tears, little sleep and a trip to the Opthalmologist the next day. This was followed by a few more days of a world of pain, a little bit like I was stuck in some strange twilight zone or was a vampire as I could not tolerate any light, could not make my eyes focus properly, felt like I had a bunch of sharp rocks rolling around inside my eyeball all the time, could not find a place or position anywhere in the house, except for momentary minutes when I could stand in the lounge room in just the right position, holding my face in a certain way, to try and reduce the facial, sinus and eye pain all at the same time.

When I rocked up at the Opthalmologist on Monday, it reminded me I had forgotten to make a new appointment for my regular diabetes eye check up, that I had inadvertently missed a few months back (bad diabetic). It also made me slot right into the role of being a patient. Of feeling powerless and like I had to be a good girl and do what I was told. My usual doctor was not there, the one I have been seeing for 28 years, so I got another guy I have never met. He inspected it and said it was a huge scratch and would take a week at least to heal. He shoved drops in it, a pencil to turn my eyelid inside out to check nothing was lodged in there, and rammed a patch on it which he then taped with a bunch of tape to my face, saying I had to keep it like that until I saw him in 4 days. Until that point I had not been able to wear a patch as it just put too much pressure on my eye and made the pain even worse. But when he did this I thought, “oh actually, how he has done that is ok, I can do this”. On the way home, the anaesthetic drop he had put in my eye wore off. And, the patch was ripped off!!

I then did some research (with my good eye) and found that in fact, there have been studies suggesting patching is not helpful in many of these cases. Ok I thought, I am taking control. It is my body. I can not possibly survive this week with the pressure patch forcing my eyelid to rub against these imaginary rocks in my eye. So I went with it. And today, he tells me it is 95% healed. So was it the right way to go? It was for me and that is all that matters.

Sitting in the waiting room today for the final check on the injury with the room filled to the ceiling with people, mostly elderly, it also took me back to being 18 and my so called “transition” to adult care. Which meant being kicked out the door of the warm children’s hospital into the glaring light of the adult outpatient clinic, among the elderly patients, being treated like cattle. It threw me. It made me feel like a patient again, powerless, waiting to be told what to do. I felt like an outsider, odd. “What would a younger (I won’t say young anymore!) person be doing here?” I imagined the other people thinking, “What could be wrong with her?”  Don’t get me started, I thought.

No matter how much I love my health care professionals (and yes people like my Endo who I have been seeing for 29 years and who is wonderful, I do class as someone in my life who I love)  there is always this power shift when I go to see them. There are often tests. I often feel I need to pass these tests. They often include scales and blood and peeing into a small container and blood pressure and hot and cold and vibrating metal things on my toes and a feel of my goiter on my thyroid. I worry about the fact I did not clean my feet well that morning and have I got decent socks on? I try to make myself as light as possible by not wearing too much clothing.  I am a smart, confident and capable woman. I have managed diabetes for 34 years. I have three children, all conceived and delivered with type 1 diabetes on board my body. I am a diabetes educator and a mental health social worker. I started and run a national diabetes service. I am doing my PhD. Yet, I still I can not control this, I just slot into it.

My blood tests last week show my diabetes and general health to be pretty good, great in fact for me, but I may have to start cholesterol tablets. I don’t want to. I fought the blood pressure tablets last year and ended up realising they were needed. What do we do in these situations? How can we as people with diabetes and other chronic diseases and our health care professionals (who we need in our lives), work out a way that is true collaboration? Is it possible? Is it what we want? Do we want to be told what to do sometimes? Being a person with diabetes, a diabetic and a diabetes health care professional is a unique and privileged position to be in. I can see both sides of the fence. And usually the goal is the same. It is often the way we try to get there that does not meet.

I am not really sure what the answer is, but one thing is for sure. On Sunday, when I had the accident and was in so much pain, was unwell and scared? I wanted to be told what to do. I wanted someone else to take control and say this is what we are going to do to make you better. But with my diabetes? I don’t want that. I want to know there are people I can go to when I need, to ask questions, get advice, guidance, back up, support. And that is a very different thing.

What are your thoughts?

Helen Edwards

1 Comment

  1. justconsideritblog on October 30, 2015 at 1:31 am

    Human beings can be quite perverse at times. We want our health care professionals to leap to the rescue when something goes wrong and we panic, yet when they offer their help we can get all offended as if they’re thinking ‘You can’t handle your diabetes’. I’m also lucky with my Endo (I’ve been asked to repeat that word by a few Diabetes Educators so it’s good to know that someone else uses it), he’s a leading Melbourne specialist and I’ve been with him for 22 years. I’m actually planning on getting a medal from a local engravers and having an inscription put on it, something like ‘For 25 years of listening endlessly…’. Well I’m not too sure I’ll wing it when the time comes. 
    Isn’t it interesting that it’s so easy to play the blame game for ‘dropping the ball’ when we don’t do something that’s important to our health, yet when we DO something positive we don’t tend to reward ourselves? Sometimes it’s really hard just to get through my required tests and injections, so I try to do something I enjoy to reward simply getting through the day. I might watch a tv program, read a book, or I might have a couple of pieces of chocolate. It’s an indulgence.
    I hope you punished the plant by the way. I also hope you’ve not had any problems with your eye as I’m reading this on 1/11/15.
    Emily

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