What I miss

(Post idea taken from Renza)

I’ve only had diabetes for four years. If my diabetes was a child, I wouldn’t be able to read, tie my shoelaces or plait my hair. I’m a diabetes baby, and as weird as it may seem to me now, I’ve lived the majority of my life without this stupid disease. I never really sit back and reflect on my pre-diabetes life, as it hurts too much and feels like I’m purposely putting myself in pain, but I thought it was a good idea to delve into that part of myself that I always push down and try to ignore.

What do I miss?

  • I miss my emotions being JUST emotions, not something that will affect my blood sugars and result in more guilt, on top of the stress/worry/sadness I’m already feeling.
  • I miss being able to exercise without doing a 12 step equation in my head to figure out basal rates.
  • I miss not being connected to a machine 24 hours a day, 7 days a week.
  • I miss my old stomach, thighs and hips. They weren’t full of bruises, scars and insulin lumps – I could rock a bikini without people asking me if I had been in a fight.
  • I miss walking around completely naked 😉 #pumpersgetit
  • I miss being able to eat with strangers and not having to deal with people freaking out whenever they see the blood on my finger or the syringe I’m using.
  • I miss sick days just being sick days – no ketones, no high BGLs.
  • I miss the easy assumption that having kids will be straightforward.
  • I miss being able to eat when I want to, not when my blood says I can or can’t.
  • I miss feeling safe in a hospital. I know more than the nurses and most of the doctors about my diabetes, and that is a terrifying feeling. I had a nurse nearly give me 30u of NovoRapid because she thought it was long acting… (RAPID!! HOW DOES RAPID IMPLY LONG ACTING?!) I have to stand up for myself the entire time and that sucks.
  • I miss going out with a tiny bag.
  • I miss not basing my self esteem on my diabetes control (I’m working on this)
  • I miss my life not revolving around numbers – weight, food, bgls, bloods, averages…
  • I miss the lack of guilt – guilty because of the money I cost my parents. Guilt for future kids if they ever get diabetes. Guilt over my numbers.
  • I miss going to bed and knowing 100% that there is no risk of dying in my sleep.
  • Most of all? I miss the freedom. Diabetes is always there. It’s there when I’m doing an important uni presentation and my sugars shoot up to 23 (thanks stress). It will be there on my wedding day, the day I have a child, at the funerals of my parents – it never leaves, and I can never have a break. What did I think about before diabetes…what was in my head?!

Diabetes has brought a lot of amazing people and experiences into my life, but if you could wave a magic wand and take it away from me forever, I would be first in line. I HATE it, like I’ve never hated anything before. My life is great, but I can clearly remember life before it, and it sucks to have tasted that life. This may seem like a pity party post, but I think I’m allowed to mourn my old life sometimes. I’m a realist – diabetes sucks, it doesn’t matter how pretty they make the pump covers or blood test meters, it sucks. Don’t pity us, but understand that it’s not easy. 

13 responses to “What I miss

  1. So much agreeance. I miss eating mindlessly…like just sitting and watching a movie and shoveling in popcorn….I miss popcorn….so much. (The one thing I can never ever eat). My pump beep as I write this…and I realise I miss having a silent pancreas. My outside of my body one talks too much.

    • yesss, the mindless eating! The lack of thinking…now I just do one kick ass bolus, but then if I get full I have to keep eating, ugh -_- POPCORN OMG MY ONE LOVE, you poor thing I live on popcorn! xx

  2. You’re right… it’s not easy. And it sucks. There are so many things for us to miss, and most don’t seem like a big deal. We just want to live, without all the extras that diabetes brings us. Thanks!

  3. Georgie, you are allowed pity parties if you feel like one, but only if you invite at least one family member or friend! And just remember, if it wasn’t for Diabetes, you would not be the remarkable young woman you have become. You would still be pretty cool, but that does not come close to who you are today.

  4. Likewise, I am a diabetes baby (4 years in March) and there is SO much I miss about life before my pancreas entered into early retirement. Yet, there is so much that has happened as a result of my diagnosis, and it leaves me feeling all confused! Thanks for writing this post, and to Renza for inspiring it!

    • yes! so much confusion, I’m so grateful for the experiences I’ve had and the people I’ve met, my life would be so different. But then again, I hate it so much! Damn diabetes 🙂

  5. I was diagnosed at 17 too. I’m going on 26 and can’t believe it. I miss all the things you said, especially the freedom to be completely carefree.

  6. Great list. Especially not being able to walk around without a pocket or something for the pump. ACK!

  7. I’m 20 years old and have had T1 Diabetes for 5 years. I miss walking around in my bedroom naked and going out without a bag, just some emergency cash in my pocket. I miss being able to travel (whether to the movies, a couple hours away, or out of the country) without having to plan hours, days, or weeks in advance what supplies and snacks I need to bring.

    You’ve written an amazing and important article that I’m sure many PWD who were diagnosed as teens and adults can relate to. Thanks for reminding me that it is okay to reminisce about the past.

  8. Very strong personality, I commend you. Im 28 and was diagnosed at 17. I’ve hated it since day 1. I literally have prayed for death hundreds of times. I dont know if its just an American thing or universal but people just don’t give a flying crap about us. Everyone cares about “real” diseases like ALS,MS, or cancer. In the workplace ye be damned if its not breaktime and you need a candybar or snack to pop your level up. Ye be damned if you aren’t on the pump and your levels are high and you appear lazy. It gets really fun when you want to exercise and work out. Cant just eat something before and after you gotta calculate that timing of insulin taking that food and giving you energy at the right time and hope you didnt overdue it. Then theres the agitation of high blood sugar causing frustration of loved ones. Without health insurance its like robbing a bank just to get supplies. Ive had to beg for extras from other people’s supplies, buy pens from friends or sellers, and finally pay over 200 USD per box uninsured thats when I actually had a prescription. Government likes to feed and give SSI Disability to people with way too many kids that are just plain lazy. Round here you get told to work in a factory on your feet 40+ hours a week Diabetes be damned. I had to quit because I was afraid even with decent control Id still have my feet chopped off from hostile conditions that aren’t friendly to normal feet to begin with. Is it like this where you live or is the USA just a BS place to live where no one gives a crap unless you’re lying on a deathbed and havn’t finished your last will and testament?

    • Hi Drew,
      I’m so sorry you feel this way 😦 In my personal opinion I think it’s the USA! Your healthcare system seems to be incredibly catered towards those who ca afford it!! We definitely have our issues in Australia but at least I can afford my insulin and supplies with no insurance – I’m a student living just below the poverty line and I can make it work. I’m so so so sorry this is your experience – seriously, move to Canada!! no one should feel like this!

  9. Thanks for the kind words. I would love to move eventually. I try to see if everyone else has had just of rough of a lifestyle as me with this disease. It is both disturbing and refreshing that this is not the case, awkwardly. I’ll be following your blog for sure though.

  10. Thank you for posting this. It is literally perfect, and exactly what I needed to read today. Thank you.

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