It's day 3 of Diabetes Blog Week 2014 (Thanks Karen!). May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)
I'm a bit late posting on today's topic which has given me a chance to browse around a few posts on the link list. One of the strengths of the Diabetes Online Community is the sense of shared experience. Shared struggle. I have read some heartbreaking posts today, but I've also read many that have just made me think, "Yup! Me too." What might have been a difficult topic has actually been hugely encouraging.
The emotional effort of living with a long term condition cannot be underestimated. It is really great to see its importance increasingly recognised in recent years both by clinics, HCPs and by patients themselves.
Like many people I am mostly fine most of the time. But I think everyone who lives with diabetes for any length of time will be familiar with those days when it just seems too much to carry. The weight of it unbearable. The prospect of managing another day with it almost impossible.
So what drags me down? What is my particular trigger?
Well you don't have to read many posts or tweets of mine before I'm moaning about chasing the moving goalposts.
Here's an example. Three consecutive Wednesdays. Each start with a breakfast of 30-35g carbs (2 slices of the same brand of bread, toasted). Then a trip to the gym - 25 minute medium pace run and 10 minutes light weights/core. Lunch is two more slices of the same bread as a sandwich and a medium-sized apple. Evening meal will contain around 50-60g carbs and is likely to be one of 5-10 tried and tested family faves. There is just enough variation to keep me sane, but a clear attempt to reduce the huge number of variables involved so that doses/approaches that have been carefully tweaked *should* give reasonable results. Should being the operative word. Here's what happened:
The eagle-eyed among you may have spotted that the second Wednesday didn't quite go to plan. The first was not too shabby at all, while the third was just bewilderingly level.
And yet did pretty much the same things, in the same way.
I put just the same amount of effort in. I played my part. But for no discernible reason my basal requirement altered dramatically around Wednesday #2. So then it's back to basal tweaking for the next 5-6 days (often much longer) with all the 'out of range' results and uncertainty that entails until yesterday when it began to fall back into place.
Tomorrow? Who knows!
I've been chasing these changes back and forth for months. For years actually. Some times I get some stability for several weeks on the trot. But not often. And I recognise that I am incredibly lucky to have it so good.
But this is the grind for me. The thing that can wear me down. The actual doing of the routine is not so bad. Some routine, occasional special occasions/treats/holidays, then back to routine. That always seems doable.
But putting in all the effort and getting a BG roller coaster back seems less than fair. Not exactly a reward for any self-control I may have mustered. And every time the goalposts chase off into the distance it's more effort, more tweaking, more testing. And all the while, more out of range results and the spectre of diabetes-related nasties prowling around the edges of my consciousness.
But... And it's a BIG but...
Every time I rant about the frustration of having to fix something I haven't broken - EVERY time - someone will be there, day or night, from one corner of the world or another, to offer support, sympathy, smiles.
This is the beauty of the DOC. We are stronger together.
Yes, I think this is my main frustration with diabetes, no two days are the same even if you do the exact same thing! Grrr...thankfully the DOC is so wonderful at providing support :)
ReplyDeleteWonderful blog.
ReplyDeleteHave you tried some of the more "old fashioned" and less processed breads?
White bread particularly has a very high GI index and can cause a pretty high spike in the BGs.
I've found that sourdough rye bread (proper loaf - not the thin German stuff) has a much lower GI index and produces a nearly flat BG trace after sandwiches for lunch (yummy) so long as I stay a bit active as well in the afternoon.
You can get them in Waitrose or your local organic type bakery, and Abel and Cole deliver an excellent one.
I've found the same spike reductions for all the processed carbs - brown Basmati rice instead of white rice, durum wheat pasta for spaghetti etc. All little changes but overall my BG variability has come down a lot.
Just read an excellent book by one of the first T1 bloggers - Kerri Sparling - called Balancing Diabetes - full of wonderful insights and very helpful.
Best wishes,
Ian
(T1DM)
Thanks Ian. Yes I've tried a variety of different breads. In general I opt for Burgen Soya and Linseed, which treats me pretty kindly on the whole - though as I'm sure you'll know all too well... some days I can have pretty-much a flat line BG having eaten the fluffiest crustiest white French stick, while on others my 'normal' go-to safe choices can make a graph of alpine-mountain proportions!
ReplyDeleteAt the end of the day, for me it's about the balance between trying to keep the number of variables in check on the whole, while not having to feel crushed under the weight of limited choices.
Thanks Mike - I'll look out for the Burgen Soya and Linseed bread - sounds lovely.
ReplyDeleteMy wife found a great recipe book a couple of years ago written by a cook and her cardiologist husband (Joyce and Robert Schneider) specifically for diabetics - lots of baking recipes with soya and linseed - really fantastic muffins, brownies, cakes etc. - they all need remarkably little humalog - sometimes none at all! I usually have one of the muffins for breakfast on a work day.
Easy to order the soya flour online from Amazon.
http://www.thecookandthecardiologist.com
Joyce and Robert Schneider - "The New Diabetes Diet: Control at Last (& Easy Weight Loss) with No Carb Counting, No Sugar, No Flour...and Brownies!"
Best wishes,
Ian
I know this frustration well! With my son, we can have two virtually identical days food and activity wise, but two ridiculously different blood glucose level days! I think it's just 'the nature of the beast' unfortunately!
ReplyDelete