People living with diabetes and other chronic illnesses know how challenging and relentless this condition is. It is a 24/7 job of monitoring, calculating and making multiple potentially life threatening decisions each day, with daily symptoms that can greatly affect the overall quality of life.
As if all of that was not enough, I seem to be collecting multiple chronic conditions that have all been diagnosed in the last 2 years. All of which affect my type one diabetes and the management of it.
What does having Chronic Conditions and COVID-19 feel like?
POTs , Scoliosis, Chronic Pain, Long COVID and a leaking heart valve are all very pesky conditions. For the longest time I didn’t even realise living with other chronic illnesses could affect diabetes. Essentially, my blood sugars are either incredibly high or low, there’s no middle ground and my time in range is never above 30%.
Chronic pain, or fluctuations caused by POTs all cause issues with my blood sugars. Equally, wild blood sugar fluctuations cause havoc for my already high resting heart rate of over 130bpm. Long COVID is honestly just one massive rubix cube to navigate. It has been causing serious insulin resistance, as well as huge pain flares in my head/brain and legs. It’s quite a vicious cycle. So now, there’s even more guessing and figuring out how to manage diabetes, because it’s not just the standard 42 factors affecting diabetes management that I’m dealing with here.
Managing chronic illnesses creates guilt
For a long time, I blamed myself for what was happening with my blood sugars; all I was seeing on Instagram was perfect graphs, 60%+ time
in range. Then there was me, at one point lucky enough to scrape 10% in range when I was at the peak of a flare. I’ve never been one to compare myself to others online, until I got type one. The online community is truly a wonderful place. For someone on the verge of their third bout of burnout, it was quite a dark place for me. During my diabetes clinic at the start of the year, just after recovering from having Covid-19 over Christmas, my diabetes nurse and dietician were shocked by my Dexcom reports. My nurse asked me outright, “have you had Covid recently?” and when I said yes, she looked slightly relieved because it made a bit more sense.
We then discussed my other health conditions, and as soon as I mentioned Dysautonomia (which has now been formally diagnosed as POTs), they confirmed that my approach to diabetes management is not the issue. My body does not function as it should; and that is the issue. Then came the Scoliosis and Chronic Pain diagnosis a few months ago. This helped my consultant and nurse confirm both these conditions tend to increase blood glucose levels.
There’s no such thing as control with chronic illnesses
It felt like everything fell into place and made sense. Even though I was still none the wiser as to how to actually deal with my diabetes and these conditions, I at least knew that it wasn’t all my doing. That was a huge weight lifted from my shoulders, as it is really easy to blame yourself any time something goes ‘wrong’ with diabetes, because the entire responsibility of it all is in our hands. We make the decisions, and have to deal with the consequences, no matter the outcome. The stigma and judgement that comes with it all though from health care professionals can be draining.
I was told that my Dysautonomia has probably been caused by diabetes; I know that I have had symptoms of POTs since 2012, long before diagnosis of type one, but a cardiologist I used to see defaulted to blaming my health issues on diabetes. Why? Because he can. It is a known fact that having an auto-immune condition can cause other auto-immune conditions to occur; but who’s to say the Dysautonomia/POTs didn’t cause diabetes? Being told that diabetes most likely caused it, honestly made me feel like it was my fault because my time in range was so low.
Advocating for yourself can help with your diabetes management.
My biggest piece of advice for dealing with diabetes and other chronic conditions, is to not be afraid of advocating for yourself. It could be life-saving, because you know your body and its needs better than anyone else. Also, talk to your diabetes team about your issues; when I spoke about Dysautonomia to my consultant, he immediately linked me up with an excellent cardiologist who I’m now under the care of to get more clarity of my situation. If you speak to your team about these other issues, they can refer you to other departments to get the bigger picture, which then ultimately can help with your diabetes management.
Now we are getting somewhere with my heart issues, and I’m going to be seen by a spinal surgeon, we can begin to figure out what causes my flares, when, and how best to manage them, while also figuring out different insulin ratios when my body is feeling relatively ok, and when it isn’t.
Living with chronic illness is tough
Dealing with diabetes and other chronic illnesses is a long, difficult process, and a lot to take in mentally. I am slowly starting to realise that my case is quite a bizarre one. Also that time in range is not everything. It does not define or undermine the effort that I put into managing diabetes, and my experience compared to someone on Instagram is not comparable in the slightest.
Living with chronic illness is tough, but those living with it are made of strong stuff. If you’re reading this and you’re struggling right now, reach out to your diabetes team, don’t compare yourself to anyone online, and keep going. You’ve got this.