Diabetes can be a very mental disease. It likes to play mind games with you. It likes to claw it’s way in and all you can do is be ready for it and tell it to go away. Diabetes is also one of those things that is practically a person you live with – you do all sorts of activities together, you go everywhere together – you have your secrets that tend to stay between the both of you.
In previous posts, I’ve delved into the rollercoaster that has been my eye health over the past 3-odd years. It has definitely been quite the wild ride – good and bad; optimistic and dreary. I think the biggest thing I keep to myself now is the extent of my fear about my eyesight. I don’t share my true thoughts about any given aspect. I don’t share exactly how much I sit and think about my vision and obsess over what I see at any given moment in time. It keeps me up at night some times, but then again, THAT is just diabetes in general.
When reflecting on the idea of accomplishments because of, in spite of, or even despite of diabetes, I cannot help but feel the answer to this is two-fold. And those folds have a million tangents, clauses, alleys, twists and turns: so buckle up.Diabetes never slowed me down as a kid. I just had it. I didn’t let it stop me from doing normal kid activities. It generally never gave me pause…well, I’m sure my parents had bouts of indecision and worry, but me? Nope. I had diabetes and well, that’s what I knew and I took the extra steps needed to do what I wanted. But then, I got older and diabetes got heavier. It got plain hard. And why shouldn’t it? It’s a chronic illness that never goes away and will follow me into old age and beyond. Along this particular road, my biggest accomplishment is keeping my sanity (for the most part) intact. I’ve been able to make some sort of truce or peace agreement with the idea that this shit won’t go away. Don’t read me wrong: I still get mad or irritated. But I’ve accepted that it’s here to stay.
According to previous blog posts, I’ve had some bumps in the road with my health due to diabetes and some poor choices. I have somehow pulled through all of those tribulations with a greater sense of self-worth and awareness. I understand my diabetes more. I am more in-tune with what my body needs. I’ve had a new “outlook on diabetes” so to speak. My approach to self-management got a major overhaul. So all of that being all of that, I’m relatively sane and I feel like a stronger person for it.
My second caveat would be a future accomplishment. Seeing that apparently I was absent on Career Day where someone hits me over the head with “you have diabetes…use it!”, I am now ready to make a career choice. What good is diabetes if it can’t earn it’s keep – and yes, now I’m using “earn” as in dollars. Why not? I already work in the medical field, in an area open to me diabetes-wise…so I’m going to move forward somehow, some way.
I really want to become a counsellor/therapist for young diabetics. I want to be in a role where I can share my experiences and make someone else’s diabetes somewhat better, more bearable. I wish more than anything that I had had someone growing up to confide in; to have known what I was going through. How I felt. How actual diabetes feels. Where was someone who could have gotten through to me during the lowest diabetes moments I’ve had to say “Hey. What are you doing to yourself? “ If I can make even the slightest, tiniest difference to someone, it will all be worth it.
The insulin pump isn’t my ideal piece of fashion add – on. Too many decisions on where to put it, is this suit ok, is it out of the sun…blah blah blah. But I ask you: what are the chances of putting my butt in the sand right next to another fellow T1D? SMALL WORLD!!! I put my earphones in and kept catching snippets of conversation…and to my surprise: there’s a fellow pumper!
I always find it fascinating when I spy other PWD in the wild so it got me thinking: maybe in these days in age, the insulin pump and diabetes in general truly is the most fashionable clothing accessory!
I will say however that a tan line of the outline of an infusion set and CGM is NOT dead sexy.
Rewind about 25 years. May 20, 1990. What if that day was just like any other? What if I wasn’t peeing like a racehorse every very-so-often? What if I wasn’t staring aimlessly at the T.V. whilst sitting about five inches away from it? What if I wasn’t exhibiting signs of type 1 diabetes?
What if I never became a type 1 diabetic?
This idea is kind of useless. I do have it. But I’m not so sure my life would be much different. Well, my childhood at least. Diabetes was a part, not a way, of life for me. I was never limited in my activities, etc. I played sports. I hung out with friends. I went to sleepovers and birthday parties. I got caught up in typical childish drama. No one dwelled on the fact that I was a diabetic. My mom did a good job in seamlessly folding diabetes into daily life. Not that it wasn’t beyond my notice, I just was a kid.
My high school and college years though…if I didn’t have diabetes, I would have been gold. Wait. I “didin’t have diabetes” for years; I lived like I didn’t have diabetes. Whoops. Honestly, if I didn’t have diabetes, maybe I wouldn’t have been affected by depression as severely as I was. It was debilitating to a certain degree. My life spiraled out of control…but I would like to think if I didn’t have diabetes, I would have gone to class and made more of my time and potentially been in a very different situation now. Maybe I’d be in a job that I loved, making a gazillion dollars a year. Maybe I would have invented something. Cured something. Made a difference. Maybe I would have been a doctor…writer…teacher…circus performer…absolute bum.
Who knows? Fundamentally I would have been the same. I would come from the same family. I would still look exactly like my mom and act exactly (creepily) the same as my father. So, maybe I would be the same…maybe I’d be worse. Diabetes sucks plain and simple, but there are things in the world that are worse.
As I sit here losing my trains of thought and keep staring at the horses running around in the field behind my house, it hits me that this all doesn’t matter and is complete bullshit to even ponder. I do have diabetes and it is now so ingrained in me that I can’t even imagine being without it…it’s kind of a security blanket because it helps explain some of my wackiness. As I said before…it’s a part of my life. Not my way of life.
***Before I delve into my latest problem, please note that the feelings and opinions here within are my own. They aren’t putting anyone else’s feelings, thoughts or actions down. I am merely trying to convey where I am at with this topic***
I’ve been thinking a lot about kids lately. They surround me whether it be my friends’ kiddos, Facebook photos or just random discussion. I’m on the brink of turning 30 years old and B and I have been together for somewhere in the neighborhood of 4.5 years, so naturally, the question of “are you having children?” comes up more and more frequently. And more and more frequently I get to feeling awkward, sad and a little bit judged.
“Do you want children?” Yes and no – depends on when you ask me. I mean, I haven’t ruled out the possibility 100%. Theoretically I do want one – I feel like I’d be missing out on some huge part of life by not creating one. But what stops me is: what type of life would I be giving this hypothetical child? I’m not sure I ever get passed that. So, “when are you having kids” becomes complicated for me and the short answer that always springs to mind is probably never.
If you want a rational, quick answer, this ramble is probably not for you. Hell, I can’t make heads or tails of it most days myself. As I said, I’m approaching 30 years old, which I know isn’t old…but here comes that pesky thing I carry with me all the time: diabetes. Diabetes scares the crap out me. I know some people are willing to take this risk, are positive and that millions of diabetics give birth to healthy babies all the time. With all the technology, good control and support a diabetic can get during this time – it’s a very, very doable thing.
But I’m always stopped short. Could I live with the knowledge that my child could turn out like me? Would that be the worst thing? What if something goes wrong? What if I do something to mess everything up? Would I feel guilty? What about complications? What about MY complications? Am I in a position where children are even a smart idea? Can I even have children?
I have enough complications from diabetes currently to keep my life and mind occupied right now. How will this affect me further during pregnancy? My eyes are already f-ed up: how much further would they and could they go? Then everything goes a step further: I’m terrified that for one reason or another I wouldn’t be around for them later.
All these thoughts and worries consume me and make me anxious. I feel that pull to have kids of my own, but maybe I just can’t. I’m too selfish with my time and my own shenanigans to complicate anything further by having a little human being being my number one. I wasn’t my own number one for a very long time and I still have a long haul to go.
Every time I’m questioned, or hear that B was questioned, is like a dart thrown at my heart. I feel like most people cannot understand why I might not have a mini-me and everyone’s quick judgment and reaction to the “oh, but you gotta have kids!” is just that: judgment. Whether I choose to take giant leap of faith and work towards becoming pregnant, or I patiently wait for my brother to have kids so I can be “cool Auntie Ashley”, it really is no one’s business but B’s business and mine. It’s my body and my choice and at the end of the day, I just want the best life possible for everyone. Hey – at least I’ll never need a babysitter!
I promise maybe to come up with a positive post next time 🙂
Do you ever feel like a walking, living, breathing diabetes? That’s how I’ve felt lately. What do I mean by a walking diabetes? You know: you’ve become that person with the auto immune disease. All you talk about is diabetes. All you think about is diabetes. Even the side stories, the tangents are about diabetes. You catch yourself dreaming about low blood sugar – and you wake up in a pool of sweat. When others are talking, you find yourself thinking, “yeah, try that with diabetes.” That’s been me to a T.
Oh, and it gets better. You just know in the back of your mind that some people have to be rolling their eyes at you – if they’re still listening. I catch myself, talking about diabetes, and physically trying to stop myself because I know that people are sick of it – hell, I’m sick of it. I have diabetes – other people know. I had eye surgery and am having a hard time lately – yeah, other people know.
Is my life that boring that diabetes is what I’m becoming? Seems that way right now. I’m just having a rough time with diabetes. I feel like I’m the only one around for miles and no one can commiserate. The worst is how short I am with people at the moment. They’re trying to help and offer advice. My mom, who basically has lived with type 1 diabetes for 24 years through me, is trying to help. Everything comes out/sounds to me as preachy advice or some condescending lecture. (I want to say right up front that I logically understand that this isn’t what this is and that my loved ones are just trying to help me)
I want people to talk to, but I can’t stand to talk to anyone. How is that for a vicious cycle? Maybe I’m falling down the rabbit hole of diabetes depression. Maybe I’m finally settling down post eye trauma drama and I’m crashing. Crashing. I’m taking care of my diabetes – maybe at 95%, not the 115% I need to be. I know I need to do basal rate testing and start taking a look at my eating habits…all that diabetes jazz.
I just…don’t want to be diabetes anymore. I just want to live with it.
I’m trying my hardest to continue focusing on all of the good that is happening with my diabetes. My control is infinitely, by leaps and bounds, at the extreme opposite end of where my control used to be. I’m recovering from 3 surgeries and doing well. I’m adjusting to my new way of seeing. In addition to two silicone oil bubbles, I have two contacts to help me see…my right eye can see well enough to get around and function almost at the normal mark and my left is still playing catch up (understandably so).
I am now considered “farsighted” which I don’t completely understand how. I can’t see far or near…but alas, I’m not an ophthalmologist or optometrist. I am having a heck of a time seeing up close…argh!!
My second to last lingering complaint for where I am at this point is I am suffering from the wackiest double vision. Oh. My. God. It’s the most inconvenient thing EVER! There is, at most times, two of everything. My eyes seem to point in different directions….which leads me into my biggest complaint.
Dependence. I currently have to rely on family and friends a lot. I can’t drive. I have a hard time navigating stores. Reading some things has become difficult. I just hate depending on people. I hate the waiting. I hate having to ask someone to go out of their way. It’s just frustrating. I know they (most) are happy to help me out right now…but it makes me angry. I’m on the cusp of being able to do more on my own right now…but only the cusp. It’s like a kid that just wants the training wheels off of their bike already yet no one has a screwdriver.
I try not to dwell on that kind of crap – no reason to drag myself down and stress about it. It’ll all be OK. I have a couple upcoming appointments and my ophthalmologist knows what’s going on (I seem to see her over my lunch break around the hospital a lot)…writing it all out has helped relieve some stress of it all – it is sounding stupid, small and petty to me now. I should just be thanking my lovely stars for where I am.
I can see, however unfocused, and that is all that matters.
Being a PWD is a lot like being Rocky Balboa. How, you ask? Well, let me explain. I was watching the movie that started them all – the original, very first “Rocky” movie the other day and it just kind of popped into my mind and stuck. Being a person who deals with diabetes 24/7/365, I kept ticking different attributes of Mr. Balboa off on my fingers as they went by. Yep. I do that. Uh huh. Diabetes is like that. Sure. I feel like that.
- Rocky is a fighter.
- Just his profession alone is like having diabetes – or any chronic condition for that matter. Every day, we wake up to take on whatever fun things diabetes decides to throw at us at any given time. Bring it on, ‘betes!
- Rocky trains. A lot.
- Cue “Eye of the Tiger” and mentally call up the scene where Rocky runs up the Art Museum steps. Or better yet, mentally cue Rocky pounding raw meat. He runs. He punches the bag. He’s bloody and banged up. We train. A lot. We learn every day about diabetes and different technologies and treatment methods. We prick our fingers. We bleed. We train.
- Rocky takes on challenges that might seem unattainable.
- Consider: Rocky Balboa side-by-side Apollo Creed. Apollo is bigger. He’s more prestigious and has a far better record than Rocky. Diabetes can seem daunting and hard. Diabetes IS daunting and hard. Some days, diabetes can seem downright impossible, but a PWD doesn’t shy away from that. We take it one day at a time and we can, will, and DO attain our goals.
- Rocky has a good support system.
- Rocky has many people in his corner, plus a woman who loves him. One of the best things for a PWD is an excellent support system – family, friends, health care professionals, the DOC…you name it. Support comes in my different shapes and sizes, but it’s always there.
- Rocky doubts his decision to fight Apollo at a point in his training – he doesn’t think that he can win…
- One night, Rocky comes home and sits on the bed with Adrian and says that he is not sure he can beat Apollo in the fight. As a PWD, we doubt ourselves a lot about a lot of things. Diabetes is not an illness of absolutes. We are never and can never be 100% sure. What works one day, doesn’t the next. Unseen things such as stress or whatever the weather is doing on a particular day can sink our boat. Doubt is part of the deal.
- …but he still fights anyway.
- So, PWD have doubts, like Rocky, yet we forge ahead anyway. We merely need to find ways to help us deal with the questioning and doubt…and move past the peskiness. We diabetics know a thing or two about rallying. Diabetes is in a lot of ways like an uphill battle, yet our legs are strong and our shoes are comfy.
- Rocky doesn’t always win.
- PWD don’t always count carbs correctly, or calculate insulin as needed – whatever the daily epic fail might be. Trying to be perfect is an imperfect idea. Rocky had a record of a handful of wins, 25 some losses and he loses to Creed (don’t worry, he comes back in “Rocky II” for the win…). The point of Rocky is he keeps going and doesn’t give up.
- Rocky, despite any doubts or cold feet, doesn’t give up.
- I think that’s enough said. PWD should never give up. This illness sucks, but always know there is someone out there willing to listen and help. ALWAYS.
- Rocky doesn’t always win.
I spent my night with blood sugars that were absolute rubbish and by that, I mean the line on my CGM spent it’s sweet ol’ time ABOVE my high limit line and now, I’ve somehow jumped onto the amusement park ride that has my CGM hovering at or below the low limit line because my diabetes thought it’d be a hoot. What the world?
My wish for today is one in range, and dare I even say “expected” blood sugar. Not something that has come stumbling out of right field with it’s cleats untied and carrying a first full of dandelions. Or, in my case right this very second: a blood sugar that isn’t directly followed up by a juice box.
Lately, I have been pondering the idea of “stress.” Do you ever find yourself snared into a conversation where the other party does nothing but complain about how stressed out they are – these stressors being sometimes legit, sometimes mundane? These types of conversation do nothing more than stress me out on their behalf. I even sometimes (wrongly, I will admit) want to yell at them: “Yeah? This is stressing you out? Try doing it while trying to wrestle type 1 diabetes!” (Disclaimer: I have never, and would never actually say this to a person…stress is real to everyone and everyone has their circumstances…I was merely trying for a little humor)
But I digress…
Stress does nothing helpful for people with diabetes (hereafter PWD for all you non-diabetic folk!) I, of course, am speaking from MY experience, which could be different than yours, but: stress sucks. Stress makes my blood sugars soar to crazy heights and stick there like a kite lodged in a tree; my glucose levels become stubborn as mountain goats refusing to budge. Stress seems to have a way to become all doom-and-gloom before I even realize I’m falling down the stress-rabbit-hole.
Who, in their sick sense of humor, decided that stress should have this awful effect?
Isn’t it bad enough that I am stressed out by outside things, that now I need to be stressed out about high blood sugar? Oye ve! This stress on my diabetes control is stressing me out. It’s all a very ugly vicious cycle sometimes, isn’t it? Well, stress can hereby sit on it and spin.
Stress management has never been my strong suit – then again, I have always leaned towards being a more high-strung, wound tight individual (darn my brother for inheriting the laissez-faire, everything will just work out attitude…). Back in college, I used to thrive on stress – I performed better (example: I wrote my 30-some-odd-page senior thesis a day and a half before it was due and got an A! Whaaaat!?!) But this just doesn’t work for me anymore. Stress isn’t good and especially being a person with a chronic illness, stress is of no use. So. I am hereby banishing stress from my life! …Nice try. It’s still here.
I’m going to try to find ways to unwind and let all of the extra stuff go. Maybe I’ll start going for more walks. Up my mediation a bit…go back to yoga. It’s Spring – maybe it’s time for a master breathe-and-reboot!
What types of things help you de-stress and unwind?