A Letter to My Newly Diagnosed Self

Dear Frank,

If you’re reading this, then I can only assume that you’re coming to terms with a new diabetes diagnosis.

I know that right now, you’re probably just happy to be feeling well again. You’re reluctant to show any visible signs of your condition, convinced that diabetes hasn’t changed you. But it has.

Diabetes does make you different, and that’s not necessarily a bad thing. The sooner you come to accept this, the easier it will be for you to manage both physically and mentally. Speaking of, did I mention just how much of a physical and mental effort diabetes can be? Don’t forget to give yourself some credit for this when you’re having a tough day.

This is your baby. The decisions you make around managing your diabetes are yours and yours alone. Don’t ever feel guilty for them. How much you decide to involve others in your diabetes and management decisions is up to you. That being said, don’t be afraid to lean on those around you. They will more than likely surprise you. You will feel far less isolated and much better supported.

This is about you, and you alone. People you speak with will want to jump in and give you their two cents worth. Ignore it. What your great aunt’s-brother’s-second cousin did to manage their diabetes certainly won’t hold any relevance to you. You’ll likely look at other people with diabetes and try to draw comparisons to what they’re doing or how they’re managing. It’s not worth it. Everyone is different. You’re on your own unique journey, and the way in which you manage your diabetes is completely up to you.

Don’t be afraid of the internet. You’ll find endless amounts of practical information here that you won’t necessarily receive from your doctor. Best of all, the majority of it comes from the community, for the community.

The internet is also a great place for peer support. There are plenty of friendly folk from all over the world online who are in, or have been in your shoes. They are accessible day and night. Best of all, you’ll get to experience this sense of community that will help you not to feel so isolated or alone in this.

I know that connecting to other people with diabetes in person is probably the last thing that you want to do right now, but let me tell you that it is just so worth it. There is nothing more uplifting than having a tribe of people who you can turn to when diabetes doesn’t play nicely. Or hearing the words “me too.”

Speak up in front of your healthcare professionals. Your diabetes team are busy people, and they will likely be pressed for time. Make it clear what you want from them. Use them to get what you need to live the best life you can. If they won’t support you, find a new team that will.

Everything and anything affects diabetes. Food. Activity levels. Stress. Hormones. Routine. Even sleep! It’s impossible to achieve perfection. You can have days where you feel you’ve done everything by the book, where you’ve done exactly the same thing you did yesterday, and still receive a completely wild result. Don’t beat yourself up over it. You can only do the best you can, while trying to live your life. Diabetes is 100% something that you fit into your life, and not the other way around.

You will have bad days. You will slip up. You will get burned out. You will go through a rollercoaster of emotions. I’d be surprised if you didn’t! It’s part and parcel of living with the condition, day in and day out. But you will get over it. You will come out the other end stronger, and more resilient.

Your biggest assets in the long term management of this condition are time and experience. With time and experience, you learn. You are always learning!

Diabetes does indeed make you different, but I can honestly say that it won’t stop you from living your life and achieving what you’d like to achieve.

With every passing day, you will be a little wiser and better equipped to live with this condition.

 

 

 

 

 

 

 

 

 

Diabetes Daily are running a series of ‘dear diagnosis’ letters during November. If you have your own letter that you would like to share, e-mail editor@diabetesdaily.com.

Relentlessness.

There are days where I find myself exhaling loudly out of exhaustion. My alarm wakes me for work at 6.30am, while I want nothing more than to close my eyes and go back to sleep. I find myself unable to muster any enthusiasm for the new day ahead of me, nor for the people around me. I find myself walking around with a long face, and an expression that will put a damper on everything and everyone around me. There are days where I feel like coffee, toast and swear words are the bane of my existence. Then, there’s the inevitable feeling of limping toward the finish line on a Friday afternoon.

Over the years, I’ve told myself that I was burned out. Or that I wasn’t eating the right kinds of foods. That I was overworked, and trying to juggle too many different things. I wondered if it was the exhausting nature of rollercoaster blood glucose levels. Or the mixed bag of emotions that came from dealing with an unpredictable condition that was downright isolating.

Time has gone by, however, and I think it’s safe to say that I’ve addressed each of these issues to the best of my ability. The variability in my glucose levels are far less significant than they once were. I am more connected, supported and engaged in my management. I have a far better understanding of a condition that even at the best of times makes no sense. I am far more conscious of taking time out for myself and not burning out.

But I’d be lying if I said that those feelings don’t linger, like flames from a fire that simply will not go out. There’s only one rational explanation that I keep coming back to.

Diabetes.

Diabetes is relentless. The physical and mental effort required to keep those flames at bay is huge. Throw in a full time job, freelance writing, friends, family and time out for myself, all while working towards financial independence, a career and other life goals, and it’s no surprise that at times I feel like I’m only further fanning those flames.

Diabetes is no easy feat.

When I look on in envy at the person with a spring in their step while I’m limping it toward the finish line of a Friday afternoon after a challenging week, I remind myself that most people around me don’t have to deal with the relentless diabetes demands that I do.

It Feels Like…

It feels like not setting your 1am alarm that could be the difference between waking with a blood sugar level of 5 or 10.

It feels like choosing to shell out money on ham and cheese croissants, tuna sushi, Kit Kat Chunky bars and Jesters chips instead of bringing your lunch from home.

It feels like failing to wash your grubby hands before the prick of a finger, knowing that the number will be a shit one regardless.

It feels like exhaling loudly, and sighing out of exhaustion from the mundane diabetes tasks that make life feel that much harder.

It feels like telling your meter to eff off when it screams ‘low batteries’ at you.

It feels like telling your meter to eff off a little louder when it still screams ‘low batteries’ at you.

It feels like failure after discovering your third infusion site this week that hasn’t lasted it’s full three day life.

It feels like telling your insulin pump to shut the hell up when it begins blaring that there are less than 10 units of insulin left in the cartridge at the dinner table.

It feels like trying to manually poke your finger with a lancet after you’ve left your lancing device at home.

It feels like not being bothered to weigh and carb count your dinner tonight, instead opting for a good old fashioned guesstimate dose of insulin.

It feels like checking your blood sugar, and not really caring that your levels are higher than what you’d normally accept.

It feels like anger when your new FreeStyle Libre sensor starts bleeding horribly after application, when you had put it on hoping for somewhat of a break.

It feels like frantically power walking home with a plummeting blood sugar, because you forgot to bring your glucose tablets with you on your walk.

It feels like crawling out of bed with a heavy head, still feeling exhausted after a solid 10 hours rest.

It feels like silent pleas for the coffee machine not to get choked up, because you simply can’t handle yet another failure this early in the morning.

It feels like…a bout of diabetes burnout.

(and a whole heap of bad luck).

400 (+1)

Today, I’m thinking about what I’m most thankful for as someone living with diabetes.

The inspiration for this vlog comes from Diabetes Research WA, who are holding their first ever ‘Thank You Week,’ and you can find out what it’s all about here.

This also marks post number 400 (+1) here at Type 1 Writes, and I’d just like to say a big ‘thank you’ for sharing this journey with me!