Take a peek into my life (with pictures!)

I take for granted the fact that normally healthy people never really get to experience what it’s like to manage a chronic illness, mainly because those of us who are chronically ill tend to hide our bad days. I don’t want anyone to see me struggling- I’m afraid of worrying people, or looking like I’m seeking attention. So, I tend to keep those little details to myself.

Today, I’m going to lay it all out there and share with you what a bad day is like so that you can experience it, and maybe learn a little about what it’s like to manage my illness. Some of the stuff I’m about to describe might seem like complete and utter common sense, but keep in mind all this stuff is my “normal”, so ALL of it seems like common sense to me- meaning it’s hard to differentiate between MY version of common sense, and a more common version of it. Oh boy, I hope that isn’t too confusing.

Here we go!

Today, I woke up after getting a solid 5 hours of sleep. I was actually sleeping pretty well until my alarm went off to remind me to take my morning dose of medication. No matter how much I wanted to ignore it, roll over in my warm and fuzzy blanket nest, and maybe get some extra Zs, I knew I had to get up and take my gosh darn pills or I would completely throw off my regimen and throw my body’s delicate cycle out of balance… AGAIN. Nuh-uh. I’m doing my damndest to manage my health to the best of my ability. That means taking my meds ON TIME. With a complicated endocrine disorder like mine, taking medications on time is a necessity. Not following instructions can really impact my overall health, and it can take a long time to get back in the correct balance again.

Chronic illness doesn’t give a damn that it’s Sunday and sleeping in on the weekends is the highlight of every human on the planet who is lucky enough to have that luxury. Chronic illness is like an asshat CEO with no empathy for the working class.

So, I sat up in bed, reached into my nightstand where my morning medications pillbox is, and downed the three little pills with a swig of water from the glass I had prepared for myself the night before in anticipation for this dose. Easy-peasy.

Meds taken, I sank back into my bed and closed my eyes, expecting to be able to drift back into sleep like I can usually do after the daily intermission taken to pop those pils.

Instead of sleeping, my mind decided to wander. It didn’t take long for my thoughts to fixate on my upcoming disability hearing. ANXIETY AHOY. No way I’m getting back to sleep now.

I tossed, turned, and attempted every sleep position I could manage while trying to shut up my worried mind. Relentlessly, I am stuck in the torturous cycle of running though every possible scenario of my upcoming disability hearing. My active imagination puts me right there in the courtroom.

What am I going to say to the judge? I have no doubt in my mind that I’m honest, and my condition is, in fact, disabling. I’m not worried about my ability to advocate for myself and answer questions about my conditions. I have been doing this online for years now. I’m unable to resist the urge to rehearse the best way for me to articulate what life is like with such a complicated disorder, and my creative mind throws every possible scenario back at me in response:

What if the judge doesn’t understand? What if I get there and I just can’t articulate things right? What if I have a complete mental breakdown and turn into a useless, blubbering, embarrassing mess? What if? What if? What if?

At this point, my worrying is becoming quite obsessive, and I know it’s not healthy. I focus on trying to calm myself down. Adrenal insufficiency is one of my diagnoses, and it’s the one that is most life threatening. Complications from this one can be fatal if not managed properly, and the most fun part about this is the fact that stress is a trigger for it. Oh brother. Here we go again. I can feel myself shaking a little. I’m nauseated. My muscles are a tad weaker than they were ten minutes earlier. It’s a sensation you can really feel, deep inside the fibers in your body. It’s almost like the feeling of trying to run through deep water. A slow, dull pull that clings to your bones like weights. My tongue feels a little dry in my mouth.

Way to go, dummy. You’re literally worrying yourself sick. I know the signs of low cortisol, having been here many times before. I know that my first step to controlling it is to calm the heck down. So, I get out my phone to distract myself with social media. If my symptoms don’t improve, it’s time for a stress dose.

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I made a post venting about my worries over the court date, asking for support from my friends and family. Angels that they are, they didn’t let me down. I felt less alone, and supported. Big sigh of relief. I browsed posts in my various cat appreciation groups, because cats. It’s a potent distraction, and it helps keep my mind off of things. Cats are the best therapy, hands down (or paws?).

Anyway, after browsing Facebook for a couple of hours and keeping my mind as calm as I can, I felt a lot better. Let me be clear– this does not mean I’m feeling well. I still felt like hell. I’m still weak and nauseous, but it hadn’t gotten worse. In fact, it’s gotten a bit better. A good sign that I managed my stress well enough that I probably don’t need that stress dose. Whew!

Why not just take the stress dose anyway? Excellent question, dear reader. While corticosteroids are a life-saving medication that helps control the potentially fatal symptoms of adrenal insufficiency, those same meds can also be quite dangerous. Overuse of these drugs can actually WORSEN adrenal insufficiency over time and cause damage to the body. One of the endocrinologists I used to see a couple of years ago had me on such a high dose of corticosteroids that is was actually making me sick. My skin puffed up like a balloon, and I was actually exhibiting symptoms of Cushing’s disease, another potentially fatal adrenal disorder characterized by an overabundance of cortisol. When I went I seek a second opinion from a different endocrinologist because I was dissatisfied with the level of care that bad endo was giving me, she was shocked at the dose he had me on, and very likely saved my life by adjusting my treatment to what it should be.

You can see clearly in these pictures how visible the puffiness of my skin was compared to how it was just about seven months later, after my treatment plan was changed. The photo on the left is a visual sign of corticosteroid overuse:

 

Anyway, back to managing a flare-up day. After laying in bed for a few hours, my empty stomach urged me out of bed. I got up, tossed an easy meal into the microwave, and sipped on it while getting back to work on writing this article, from my desk at my computer this time (I started writing this article on my phone from the comfort of my bed). My alarm for my second dose of meds just went off (it’s 12pm), so it’s time to go pop some more pills. Honestly feeling sluggish and drained as I sit here writing this. I might wind up taking my meds and just crawling back into bed to drift off for a few more hours of shuteye. Hopefully not too long though, I don’t want to miss out on a whole day with Justin.

It’s 5:45 now. Funny thing- I actually managed to forget to take my afternoon dose because brain fog is a pain in the butt. I got so preoccupied with coming up with a self-care plan that didn’t involve just retreating into bed that I just… forgot to take my life-giving medication? As ridiculous as it sounds, that happens so often it’s a little embarrassing. After getting off the computer and getting up with the intention of taking my meds and going to bed at noon, Justin came out of the bedroom after enjoying his full night of rest. Not wanting to miss out on time with my favorite human, I decided to try and stay awake and rest on the couch instead, occupying my sleepy brain with an easygoing video game on our Switch while he logged in to play Rust on the computer.

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After playing Stardew Valley for about 45 minutes or so, I developed a headache from eyestrain. Thanks to my Optic Nerve Hypoplasia, I have to limit my screen time or suffer the wrath of ocular pain. It’s an aching pain that digs deep into my eye sockets with an intense pressure similar to a pinching sensation. It’s not at all pleasant. It’s also frustrating and annoying, and actually adds to the sensation of weakness in my body, making me feel more fatigued overall.

I was feeling hungry again anyway, so I decided to get up and find something else to eat. That little cup of soup I drank earlier was delicious, but didn’t contain enough calories to really sate my appetite. As I got up off the couch- unsteadily, I might add- I realized that I had forgotten to take my afternoon dose of meds. Oops. I looked at the clock. I was a little over an hour late taking my dose. My afternoon dose has a little wiggle-room when it comes to timing, so this wasn’t a detrimental mistake. Still, I was annoyed with myself. Luckily, Dovah was there to help cheer me up.

 

At this point, I was feeling increasingly more tired and weak, and the headache from the eyestrain was strong enough that I was considering I might actually be having a caffeine headache on top of that. I decided then that a cup of coffee might be a pretty good idea, on the off chance that it helps with the headache and/or gives me a little energy boost. I fired up the keurig and brewed a cup while I heated up another bowl of soup (corn and clam chowder this time) in the microwave.

img_1004Coffee and lunch prepared, I returned to the couch and put something on the TV that I could half-watch while I eat. Again, eyestrain is a literal pain. I was mostly just listening to The Late Show with Stephen Colbert, not working to focus my eyes like I always have to do when I’m trying to watch something. I think that’s something that even I tend to overlook (unintentional pun, but I’m keeping it) as a legally blind person. The majority of the time, my eyes aren’t really focused on the things around me. When I want to see the details of something, like when I’m taking in the features of someone’s face when I think I recognize them, I have to actively focus my vision, and that takes a few seconds to do. I would guess that 60% of the time, I’m experiencing the world at 320p whole everyone else is at 720p. I refer to this affectionately as “potato vision”. And yes, it can make working on art pretty damn difficult at times. There are moments when I’m painting or drawing where I have had to pause and close my eyes for a second to help kind of “reset” my blurring vision. There are a lot of complications with my vision, actually. I’ll probably have to cover all of that in another article.

img_1014After finishing my meal and drinking my coffee, I waited for the caffeine to take effect. Justin got off the computer and came to sit next to me on the couch. I wasn’t really watching TV, so I told him he could use the Switch and play Smash Bros if he wanted. I laid back in our awesome reclining couch next to him and tried to rest my eyes a bit, waiting for the caffeine to set in. It never did, unfortunately. I laid there slowly dipping into a daze before crashing out completely. I could feel my body slipping into the familiar state of intense fatigue so uncomfortable that sitting up even at the slight angle I was on the reclining couch was inducing a sensation of faint dizziness that was starting to get nauseating. I announced that I had to head to bed, off to bed I went, leaning on furniture, walls, and door frames on my way to the bedroom (which was not very far from the couch). When I got to my bed, I fell into it hard enough to make the springs bounce back at me. It was a little funny to me, honestly, because I hadn’t done that on purpose. It seemed almost cartoony.

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The next thing I remember, Justin came into the room hours later to inform me that my Alexa reminder to take my meds at 4pm had just gone off. I was in a daze so powerful, I couldn’t even articulate words properly. I think I said something along the lines of “took afternoon dose late… take later…” in a frustrated loopy slur. He then told me that he was hungry and planned to order food from the mexican restaurant, and asked me if I wanted anything. Damn right I did, but I didn’t have the brain power to really consider what I wanted off the menu. Mentally exhausted and physically just as weak, I just blurted out the first menu item that came to mind. “Juanito’s Burrito”. I order that one a lot, and it’s fun to say. Sounded like a winner to me. With that, Justin left me to return to my slumber, and slumber I did.

img_1030He poked his head back into the room some time later and informed me that he put my food into the oven to keep it warm until I was ready to come eat. I thanked him, and worked on gently coaxing my body out of the intense sleepiness. I checked the time on my phone and saw that it was around 4:40. I felt like hell, and assumed I probably looked it, too. Considering I’m writing an article revealing the truth of a bad flare-up day, I decided to capture a picture of myself in my weakened state. Honestly, I don’t hate this picture. I think I look alright for someone who feels like their body is made of soggy bread.

It was really difficult getting up and out of bed. My muscles felt so weak and sluggish, and my movements were clumsy. I managed to get to my feet despite that, and I made my way out of the bedroom. I could have asked Justin for help, but I don’t like to ask for help when I can do things myself, even when it’s a little difficult. Justin knows this, and I know he keeps an eye on me in case I need help steadying myself, but he lets me be stubbornly independent when I want to be. He knows me so well now, communication between us is wonderfully smooth.

img_1032My burrito was still somewhat warm by the time I got to it. I had to steady myself on furniture and walk slowly, but I got my food where it needed to go, and settled in on the couch. Naturally, I forgot to grab something to drink. Getting back on my feet again was simply too much for me then. Justin came to my rescue so I didn’t have to get back up, bringing me some water. He’s the real MVP.

We watched some TV together while we ate, checking out the new season of Future Man. I fumbled a little with my fork and knife, muscles in my arms still sluggish and weak, but the food was so delicious, it didn’t phase me. After finishing my meal, Justin and I relaxed on the couch and finished out the episode we were watching. I was feeling awake enough by that point that I was able to get back up and move to the computer to finish writing this article ( I also took my third dose of meds, no worries!).

As my day winds down to a close, I’m fully aware that my afternoon crash is going to affect my ability to sleep tonight when I want to. I’ll probably take some CBD to help coax my body to sleep and hopefully get my circadian rhythm on course for tomorrow. First thing’s first, though, Justin is wanting to hop back on his game on the computer here (Our friend Cody is already logged in to Rust waiting for him), and I need to go take my evening injection, my last dose of meds for the day. I take Somatropin, synthetic growth hormone, to treat my Adult Growth Hormone Deficiency, and the only treatment available for that is in the form of an injection. It’s not fun, but it’s effective. Believe it or not, before I started taking this medicine, I had days like today nearly every day, as opposed to once every week or so as it is now. So, I’m happy to poke myself with that little needle each night for my health. Needles are intimidating as hell, and yeah they do hurt, but I’m used to it now. A ritualistic process of preparing the shot and carefully injecting is has gone from taking five minutes, to under one with nary a flinch now that I’ve had a few years of practice. I am the human pincushion! superhero pose

Day in and day out, I struggle with bouts of fatigue flare-ups, but today was a particularly intense one. Not the worst I have had, but it’s up there. I was at least able to walk on my own and get around fairly well. Usually, I just get hit with the fatigue and weakness out of nowhere and have to lie down at a moment’s notice. This happens just about every day at some point. Sometimes, I get a lucky “good day” when it doesn’t happen at all, but those are super rare, and I am always thankful when they happen. Those are the days that I prefer to broadcast to my friends and family. Days like today are usually kept hidden because, like I said at the beginning of this article, I don’t want to worry anyone, or come across as a “complainer”. I despise negativity, and I’m always afraid that if I’m honest and open about these days when I’m having them that I will be seen as a negative person who is fishing for attention or pity.

Even though I spent all my mental energy today writing this article, I was almost too afraid to post it, because I know that some people simply will not understand, and I’ll probably be judged for it. But… you know what? Let them judge. Being ashamed of reality is dumb.

Welcome to my reality, folks. ❤

img_1094Please feel free to ask questions if you have any!

I am an open book. I know that my condition is rare, and many people have never even heard of it. If I can help spread awareness, I am happy to do so!

5 thoughts on “Take a peek into my life (with pictures!)

  1. That you were able to explain this so clearly is amazing, especially with how bad a day you were having. More honesty like this is what we need…and, since it’s your own space on the internet, heaven help someone come /here/ and accuse you of whining! I and everyone else who reads this will batter their hides. >>;;

    Or something more kind that will do us more favors, anyway. XD Many hugs to you, I hope these rough days quickly pass.

    Liked by 1 person

    • I had to go back and proofread and edit a few times before I was satisfied with it, and boy were there many many errors. xD I kept repeating myself and making nonsense sentences. It was pretty annoying, but I think I edited most of them out anyway. 🤣 Thanks so much for your comment and support! ❤️

      Like

  2. I totally get the soggy mush bread feeling! I produce no growth hormone, like none on my own. Finally had an endo figure it out. No one gets it. Like no one around me understands it at all. But at least I know now. Hopefully I will get better.

    Liked by 1 person

    • I’m also completely growth hormone deficient, and I remember how it felt back before I got back on GH shots just a few years ago! It truly is a debilitating sensation of weakness. I hope you can get approved for GH replacement therapy soon!

      If you are interested, there is an awesome support group on Facebook for Adult Growth Hormone Deficiency. It’s managed by a nonprofit called The MAGIC Foundation. I think the name of the group is “AGHD/ Adult Growth Hormone Deficiency/ Panhypopituitarism”.

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  3. Pingback: Learning to enjoy life with a Disability | Insomnia Doodles

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