We’re almost in the middle of diabetes month, and we’re supposed to be raising awareness of diabetes, so today I’m pulling this very awareness-ey post out of the archives.
It feels incredibly permanent. It’s only been with me for the past eight and a half years, and yet I struggle to remember a life without it.
It feels incredibly monotonous. Checking my blood sugar. Weighing my lunch on the kitchen scales. Looking up carb counts on my iPhone. Pulling out my pump to give an insulin dose. Checking my blood sugar again. Pulling out my pump to glance at the insulin on board feature. Deliberating over a correction dose. It’s pretty hard to muster the enthusiasm to do the same thing over and over each day.
It feels extremely isolating. The twinges of jealousy that surface as I watch others my age who can live like there’s no tomorrow. Wondering if anyone around me can truly comprehend the burden of my condition.
It feels incredibly frustrating. One day can be perfect, while the next can be a complete trainwreck. I can do exactly the same thing that I did yesterday, and get a completely different result today. I can make a decision that makes complete sense on paper, and then stare at the result in disbelief.
It feels utterly exhausting. The physical and mental effort that this condition demands is huge, that there are days where I am left struggling to give my 100% to everything else.
It feels incredibly worrisome. Pushing thoughts to the back of my mind about what my future will look like. Wondering if I am doing enough today to ensure that I will live a healthy and complication free life.
It feels painful. Stabbing the tips of my already blistered fingers. Sticking a gigantic needle into my stomach to insert a new infusion site. Feeling the sting of insulin going into an overused area of skin tissue.
It feels ever so emotional. The journey from high to low and everything inbetween can be an emotional rollercoaster. It’s so hard not to let the numbers get to me.
It feels immensely guilt ridden. Pangs of guilt accompany every single decision I make that has an undesired outcome on my blood sugar.
It feels extremely disruptive. It doesn’t care if I’m trying to work, if I’m trying to sleep, or if I’m trying to chill on the weekend.
It feels incredibly close. Finding my tribe, who I can turn to when I’m having a shit day. Finding folks in the Diabetes Online Community, who I can reach out to at 3 in the morning while I’m waiting out a low blood sugar. Being able to hear the two most powerful words in the english language. ‘Me too.’ Making my world feel that much smaller.
It feels experienced. Every passing day arms me with that little bit more knowledge, that leaves me better equipped to deal with this condition. Like finding another piece in an incredibly difficult jigsaw puzzle.
It feels confident. Confidence to speak up for what I want from my healthcare professionals. Being my own advocate. Sharing what I feel passionate about. Finding my comfort zone when my condition has thrust me far from it.
It feels grateful. Grateful that thanks to modern medicine, tools and technology, my life has a far brighter outlook than it did a century ago.
It feels lucky. Lucky that I live in a country where insulin, test strips, pump consumables and healthcare won’t send me broke. That I have a supportive family and a job which affords me these privileges.
It feels incredibly heartbreaking. Heartbreaking that in this day and age, people are still can’t access the basic tools and healthcare that they need to survive. Heartbreaking that these tools of survival are tied to income and extremely costly insurance premiums. Heartbreaking that without the subsidies I am afforded, these tools are extremely costly. Heartbreaking that people are still dying in some parts of the world because they cannot get their hands on the luxuries that I take for granted.
I agree. Diabetes is all those things. In addition, after 52 years on insulin there is a definite history to diabetes and perhaps a desire to consider insulin’s discovery and all the benefits and developments that have occurred since then.
Are we better for having diabetes? Yes, in many ways. Can I live a life in denial of it ? Yes, but not well and not likely to be as long or as well.
One conundrum for me has been my resentment at the badgering and guilt trip imposed by health professionals on me from the tender are of 13. BSLs out of range were my fault and there was criticism and even upset when a doctor felt his reputation at the clinic was marred by my less than stellar performance in the midst of teenage years whilst his type 2 patients were so much better!! (Who does not appreciate that diabetes management in teenage years is a nightmare – especially before all the more modern improvements like glucose meters, insulin pens, pumps etc)
But, as I later learnt, it appears that the better the BSL diabetes control in the first 7 to 10 years of diabetes treatment (in T1Ds at least ) the less likelihood of diabetes complications later.
So was the ‘punishment’ early on a blessing in disguise??
You also clearly describe my feelings regarding my diabetes. I have had type 1 diabetes for 11 years and my brother since 9 years.
Sometimes I feel very lonely with this disease. Even people in my immediate environment do not see our struggle to deal with this disease every day.
And recently we also have a diabetes community in the Netherlands: https://www.diabetestype1.nl/. Support from fellow sufferers is very nice! Thank you Frank for the good wording of our feelings every time. With warm regards from Amsterdam, Marijke
It is tiresome. But, diabetes has made me a better father, husband, son and man. I do not want and would give it up immediately. But having it has made me a better person for certain.
Finding the Good in Diabetes. - Type 1 Writes - Diabetes Blog
[…] But after this post I shared earlier this week, I kind of felt like it was only fair that I balance it out with some of the upsides. Because, there have been a lot of silver linings to a faulty pancreas. I’m not allowing myself to talk about fellow people with diabetes in this post, because I think I harp on about my peers all the time. […]