Patient perspective: living with diabetes

As diabetes is put in the spotlight tomorrow on World Diabetes Day, we share the diary of one American patient living with this disease to help others on a similar journey and explain what daily life is like with a chronic condition.

When I was diagnosed…

I am 39 years old and I was diagnosed with type 2 diabetes more than five years ago. After a very sad and challenging week, I began having vision problems which prompted a visit to the eye doctor. After a basic eye exam he ran me through a number of additional exams including blood sugar levels. My blood sugar was 300 units when the normal is less than 100 and my A1C [blood sugar level test] result was 10 units when the normal is less than seven. Since that time I have taken control, working with an endocrinologist to diligently control my blood levels daily.

As a result of my diabetes, I have low energy, skin and sleep problems, recurrent infections and I am overweight. In addition to diabetes, I have high blood pressure, high cholesterol and triglycerides, and in the past I have had neurological problems that I have endured to date.

All in a day

Does diabetes ever go away? Unfortunately, no. In fact, it brings added complications when married to other health challenges. With UTI [urinary tract infection] issues my diabetes gets out of control and is still out of control! Ugh. Hating diabetes is an ongoing thought of mine. I am on long-acting insulin and we are still looking for an oral medication that works and doesn’t have side effects. My diet has been very good; even over the holidays I have managed to avoid all the sweets, but diet seems irrelevant to controlling my diabetes right now. Exercise would help but muscle spasms have kept me at a very low level of exercise. It drives me crazy dealing with health issues! I just want my life back!

My new normal

It is a constant burden and horrible that it isn’t always within my control. Sometimes I do everything perfectly and blood sugars spike for no reason. Other times I give up and eat poorly and my blood sugars are fine. It drives me crazy that there isn’t a predictable cause and effect. There are times I just take a break from testing and trust that my meds are all working. It really needs constant monitoring.

I have been on and off insulin since my cancer treatment and I’m finally off the short-acting insulin again with an A1C of 5.9. I am celebrating the small victories! I haven’t been able to exercise since my cancer treatment and that has changed my blood sugars. When I can exercise again it will help.

My advice is do the best you can and be kind to yourself. Don’t blame yourself when things aren’t perfect with diabetes. Ask your doctor for some freedoms. My doc said if I am good diet-wise six days a week to go ahead and eat something I want on the seventh day. That was so freeing that I rarely splurge, but knowing I can makes me feel better.

My private thoughts

It’s so frustrating to try to do things right and when there are only small results any progress made goes out of the door and I lose the desire to continue. Another day starts and everything is the same – the same routine, the same medication. You feel helpless, but you know you have keep following the regime. Tomorrow is a new day and maybe you will find within or around you a new force or a little inspiration. It is a lifelong process without a break and it feels like a burden all the time. When your levels are controlled, though, the burden seems less. Take care of yourself in other ways and reward yourself all the time. Life is short and you deserve to go shopping, or to a movie, or find the things that make you happy.

Like many others

Every day is a new day. I have finally learned we just have to do the best we can every day. I have found things like pain and illness raise my blood sugars. I may eat perfectly but if I am sick my blood sugars are still 100pts too high! It is OK though as each day we get better at our routines. Every day they have new medicines that might work better. We have changed my meds many times. Things work great for a while then things change. Yes we do all the things for those who love us and because we love ourselves. We don’t want the complications like blindness, amputations, etc. So every day we are motivated to take care of ourselves so we will be there for others.

You are not alone! That doesn’t mean diabetes doesn’t feel like a lonely disease. It is, because only you can take care of yourself and only you can decide what is working and what isn’t. That is why it is a burden. That, and the fact that even when you do everything right, things can go wrong. Just take each day as it comes and adjust as you need to. Hopefully you will find a normal that works for you.

The reality of World Diabetes Day

A diabetes diagnosis is more than a day. Individuals live with this diagnosis every minute of every day. Finding a way to share something private about your health so you can leverage being social as a way to be healthier, is a daily occurrence on the internet. This story was shared on www.TreatmentDiaries.com and is one example of how privacy breeds transparency. This individual’s story is a living inspiration for those newly diagnosed or living with diabetes and a reminder that they are not alone in their experience.

Read another patient experience diary:

Patient perspective: living with arthritis