Blind Panic

It is always around 4am when it happens. Not that I know that straight away. By the time I look at the clock, after a few seconds of flailing around in the darkness with my heart pounding in my chest, the panic is gone. Because I can see the glowing red digital display, and I know I'm not blind.

It almost always happens in unfamiliar places, outside of London where dark is, well, actually dark. In those moments between full sleep and complete wakefulness, my mind goes into overdrive convincing me that I can't see. That the inky blackness surrounding me isn't real, but just the gap in my consciousness that my eyes have failed to fill in. This panic may be unrealistic and irrational, because I know it would be unlikely to happen 'just-like-that' from fine to blind, but the underlying fear is very real.

I fear losing my sight.

I'm guessing this is probably not that unusual amongst people with diabetes. The potential consequences of diabetes, especially when less than optimally controlled, are continually being drummed in to us in the post-DCCT era.

Even though I know that my parents invested considerable effort in giving me good control as a child, even though I've spent a considerable amount of time working on good control myself, even though I know I'm doing everything in my power to minimise the risk, I still fear it.

Even though my routine retinal screenings have only ever found one tiny 'background spot' and I've generally been told my eyes are in great shape, even though I've passed the magic twenty year marker that supposedly points to having a low predisposition  (for reasons other than those related to glycaemic control) for complications, I still fear it.

Even though I know modern laser procedures are excellent, and I haven't even got onto the long road of any kind of interventions yet, I still fear it.

In my mind I can't help but magnify all the times my control has been less than it could have been, either despite my efforts, or, perhaps especially, because of my efforts or lack thereof.

I think that I fear sight loss because its impact would be so total. I'd lose my job, and so many other aspects of my life that are important to me. It isn't even that I think any of the other potential complications of diabetes would be any easier to come to terms with or to live with, I just find them less  overwhelmingly frightening.

That 4am panic sums it up. Oppressive darkness surrounding me until I feel as though I'll drown in it. Faces swimming into my mind to tell me I'll never see them again, hotly followed by the realisation that I'll never see anything that I haven't already seen.

The only way I know to cope with this, to keep my panic and fears at bay, is to devote as much time and effort as I can to keeping the control that gives me the best chance of staying complication free, and continuing to live the life that I want to lead. My life and freedom are precious, and I'll do what it takes. Therefore it is mainly to end this fear that I dream of a cure, rather than to end any of the daily tasks of blood sugar management, tedious as they may be. 99% of the time I feel 'well' with diabetes. A cure wouldn't make an instant difference to how I feel physically, but it would lift an enormous weight from me, and really change the way that I look into the future. Perhaps literally.

Comments

[art-sweet]

Caro -

I too have heard the 20 year statistic thrown around (and would love to believe it's true) but never by a medical professional. I don't know whether that's just b/c they think I'll take it as license to set my retinas on fire (um, no). Do you know where that fact comes from?

art-sweet, 20 years & counting 1/1/06!

[Caro]

Hi art-sweet

I have given this fact by more than one medical professional. It does make sense really. We know that complication risk is mulifactorial - otherwise why do some people who have excellent cntrol of their blood sugars get complications, and others who barely pay attention to their control manage to avoid them. There must be an individual susceptibility to complications (I'm familiar with this concept as it is common in dentistry) and twenty years complication free tends to suggest that your susceptibility is low. I think kidney disease has the best association with the twenty year thing.

Of course, it doesn't mean that we definitely won't get complications, just that the risk is a little lower. It may mean that we have the same risk of getting complications with an A1c of 8% a someone with high susceptibility has with and A1c of 6.5%

But who really knows? I guess that's why I keep working at it.

[Kerri]

Caro - Losing my sight is my biggest fear, as well. About this time last year, my eye doctor found a cotton wool spot in my right eye and it threw me into one of those diabetic tail spins. Fortunately, the condition has reversed itself, but that fear remains every time I think too much about truly long these two decades have been.

And also fortunately, there are all these people, most of whom I've never met, but who share some of my deepest fears about diabetes and they help alleviate my biggest fear of all: I won't be alone in this. No matter what happens.

[Caro]

Indeed. Not being alone is one of the best things that the internet had brought to diabetes care.

Oh... and I'm really glad your cotton wool spot resolved :-)

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