It’s not just today either, it really has been the past few weeks. Our weather has gone from the low 40’s and mid 30’s (Farenheit) to the 70’s and back again like it’s an Olympic challenge. Winds that are gusting at 60mph every few days. And honestly? My body is just not built for this. I would give anything to say that I’m simply just lazy because then I could drink some coffee and get back to things. Unfortunately, I assure you, lots of coffee on days like this will just lead to muscle spasms making everything more uncomfortable and leaving me just as drained feeling.

I hate the days like this because I’ve got things to do. I’ve got IT projects that I need to do, but I need more concentration than I’ve currently got to do it. I’ve got laundry to do before the week starts. Dishes always need done. I’m still behind on craftwork that I’ve been doing. I have things I feel I absolutely need to do!

So what do I do to cope and get things done on days like this? When it feels impossible to just get through the day?

Well…I go to work and do what I can as much as I can. But other than that? I rest. Most people would expect a list of things I do to try and work around this feeling of pure exhaustion. Drink coffee, do cardio, make a plan, take suppliments. But nope. I rest. Sleep if need be. I have slept for the majority of a day a few times.

Why? Because what we feel on our bad days is not just because we’re a little tired and need help getting kick started. Our bodies are done. They’ve got nothing left. To push at this point? You’re pushing your already stretched to the max system to use emergency resources.

I know it’s not the expected response and seems counterintuitive. Especially with the title being “How Do You Cope…”. But here’s the thing, we’re often taught that if we’re young, we shouldn’t need to nap or rest or sleep more than 8 hours. Ever. Unless we’re dying of the flu. It can be challenging for us zebras to acknowledge that we need to rest because of this. The hard part isn’t resting, it’s not beating yourself up for it.

Coping with the idea that we need to rest more than our friends and even older family members can be a GIGANTIC blow to one’s sense of self. Especially, if you’re like yours truly here and feel a need to push and do things no matter the pain level or exhaustion level. It doesn’t help that we totally judge people by their level of productivity. I can’t tell you the number of times I’ve seen memes about “Don’t tell me you’re tired until you have children” or “People who don’t work have no right to tell me their tired” or similarly worded things.

This may be an unpopular opinion, but those people are small minded and just want an excuse to feel better about their own exhaustion while being able to praise themselves for being able to feel that they’ve earned their rest period. They’re too busy ignoring the fact that they’re inwardly frustrated at their own inability to push past things to confront the reality that everyone feels different in different circumstances and has different limits. They’re too focused on seeing everyone as the same as how they would react or respond. Mainly…because I used to be one of the ones that beat myself up for needing to rest, or passing out shortly after getting home from work. I had to rationalize it for a long while, and it wasn’t easy. That right there is honestly what I needed the most help with. Learning that coping meant I had to stop being angry at myself every time I needed to rest.

So here’s the thing, you know how I mentioned that the allowance most give us for extra rest is if we’ve had the flu? When you’re fighting the flu, your body is fighting. It’s working overtime to get rid of an invader all while the invader directly impacts the bits your body needs to work. This is pretty common knowledge, and most will say to rest to give your body a chance to fight the virus. But…think for a minute…how is that different from what happens to a chronic illness? We may not have a forign invader to fight off, but sometimes our special needs bodies like to create battles to fight for themselves. It’s not that different as far as the end result.

Take my system right now for example. The barometric pressure changes, my muscles need to go into overdrive to compensate for the change in external pressure to keep joint stability. Joints still slip out because muscles aren’t ligaments and tendons, pain hormones are released, endorphins, inflammation markers. All those things shift ways your body digests food. Then you get fatigue because your body can only make endorphins for so long before it needs to rest to make more. But when I’m sleeping, I’m still in pain so I’m not getting actual rest in order to make enough for the next day. Then I’m pretty much feeling like Sisyphos with trying to catch up while not having enough energy to do it being my boulder.

I had to accept that I needed rest. That I was not built the same way as my friends who could stay up late and get up in the morning with just a quick jolt of coffee. That I was not like my friends that can just go to the gym even when they’re tired and once they get their heart pumping they’re better. I am not like my older brother that seems to be always running to a crazy level of productivity. I am me. I have different limits. It’s okay to be more exhausted than my friends that have multiple children. I don’t have to like it, but I had to accept it. Allowing myself to rest and even sleep for 10 hours through the day some times, allow my body to recharge on bad days so it has enough energy on the good days.

There is a point at which we should all look at our lives if the bad days start to outnumber the good ones. We should head to our doctors and get some tests run to make sure something more dire isn’t at hand. I’ve had where mono decided to flare and while all my organs were functioning fine, it was important for me to know that mono was the reason that I struggled to stay conscious at work for a whole week.

We may be more exhausted for smaller stimulus than most, but that doesn’t mean we shouldn’t question it either. Get with your medical team to talk about your exhaustion levels. See if there is a problem in your blood work. I’ve had issues with my VitD (as many of us do due to absorption issues) and it was at a level that was dangerously close to single digits. I’ve had anemia issues that needed addressed due to hemoraging (thanks PCOS and hyperplasia). I’ve have flares of mono when I get too stressed. All of this was important to get addressed. Taking the proper VitD suppliment, getting the Mirena IUD, and proper diet are all incredibly important in this circumstance. And even though mono was just treated by resting…it helped to know that was what I was facing rather than guessing and hoping or being defiant when my other half asked why I was sleeping so much.

Get. Your. Shit. Checked.

And then learn to accept that you may just have a new level of productivity to adapt to. The dishes will wait. Maybe a dishwasher is a worthwhile investment for you. Maybe just paper plates. Maybe you need a Roomba. Maybe you need to pre-make easy meals on your good days. Or get the meal supplement drinks for when you just can’t. Have an automatic feeder for your pets, or a support network that can help.

The main thing is learning to cope with the fact that you’re not a lesser person because you are not capable of running around as much as your peers or even as much as you’d like. After that, it’s all creative work arounds.

One of my things, has been learning to make meringue cookies. The most labor intensive thing, is piping them when they’re mixed. Other than that, I can watch them go. They’re relatively easy, tons of flavors, you can spoon them out or pipe them into pretty designs. So it allows me to feel accomplished because I’ve done a tangible thing. AND I get to share them. Want to give them a try?

What you’ll need

• Mixer with a whisk attachment, stand mixers are easier
• glass or metal mixing bowl
• small glass, corell, or metal bowl for egg seperating
• cookie sheets lined with parchment paper
• rubber scraper
• 4eggs (or maybe more)
• 1 cup sugar (run through a coffee grinder for easier incorperation)
• salt
• lemon juice
• cream of tartar
• flavor (extract or spices) and coloring
• piping bag with tip if desired
• oven preheated to 200 (Farenheit)

How to make them:

• Prep all your tools by wiping them down with lemon juice. If there’s any oil at all, this will kill your meringues. So just wipe them down and the lemon juice will help get rid of any traces.
• Seperate your egg whites one at a time using the little bowl. Why a little bowl and not in the large one? Because any yolk at all will kill your meringue. So seperate one so the white is in the little bowl, pour it in the big one. Do the next. Keep going till all 4 are seperated. If you accidentally break the yolk, dump it (or cook it and make yourself a snack), wash and wipe the bowl out with lemon juice, do another. You need 4 whites in your large bowl. **TIP** Eggs seperate better when they’re cold.
• If your egg whites aren’t at room temperature, just let them hang out until they are.
• Add a pinch of salt, and a bit bigger of a pinch of cream of tartar. Maybe…MAYBE a 1/8 of a tsp.
• Whisk on high till you get soft peaks. It takes a bit, so just watch it do its thing.
• Slowly, like literally take a spoon and put in one spoonful at a time, add your sugar.
• When you’ve done about 2/3 to 3/4 of your sugar, any flavoring that is free of oil should be added now. I’ve used marachino cherry juice, sandalwood syrup, vanilla extract, and cinnamon here. You can also add food coloring here if it is oil free. If you don’t have any…just keep going till all the sugar is in.
• Keep whisking till you get stiff peaks. (See, told you most of it is just watching it whisk)
• If you’ve got liquid flavorings with oils or things like chocolate chips, fold them in now with your rubber scraper. Add any other coloring you’d want too.
• I normally start preheating my oven at this stage, because it doesn’t take long to get to 200.
• Use the rubber scraper to transfer your meringue into a piping bag if you intend on piping them out in pretty designs. If not…ignore this and move on. **TIP** I’ve also put some food coloring in the bag and THEN added the meringue. That’s how I got the stripes on the meringes in the bottom left of the image above.
• Start to lay out your meringues on your lined cookie sheets. If your meringue has stiff peaks, it’s not really going to expand much, so you can place them kinda close to each other. Try not to make them to big or they might not dry out the whole way. But have fun with it.
• If you want any sprinkles on them, do it now
• Put them in the oven for just over an hour
• When the hour is up, DON’T TAKE THEM OUT. Some people leave them in the oven with it completely closed, but I prop the door open with the end of a wooden spoon so it’s only open a tiny crack. Let them cool the whole way. I know you really want to eat them. Go sit down and watch a Netflix episode that’s about half an hour.
• When they’re cooled, they’ll come right off the parchment paper and you need to put them in an air tight container. If they’re sticky, but cool…try and put them in the oven for half an hour on 175, then let them cool again. If they get exposed to too much moisture in the air, they’ll do this. Don’t try to put them in the fridge or anything, just let them sit on the table in their container.
• Ta da! You’ve got meringues! And you should have a good number of them. All with mostly watching and waiting.

I’ve had a lot of fun with them. I’ve done rose and pistachio, vanilla, cherry with chocolate chips, sandalwood, vanilla with a touch of cinnamon, cinnamon sugar, pumpkin spice, raspberry and vanilla, banana-peanutbutter-chocolate chip (using powdered peanut butter), and I’ve got more ideas.

Now, today, I am not even up for these. But they’re something pretty easy for when we go to holiday dinners that look fancy, taste fantastic, and I don’t have to put a whole lot of effort into.

Anxiety Lies

Anxiety stems from an important defense mechanism. When we’re in danger, what is commonly referred to as the fight or flight response kicks in. Trouble with anxiety…is almost anything can trigger that response. Though there are plenty of theories as to why the anxiety brain is so over-active, the bottom line is our anxiety disorder brain lies and says benign things are scary and we’re going to die.

Now, the hard part, is that if you’ve read the previous post…you know that there are a lot of things that we really DO have to concern ourselves with. Which just complicates the whole matter. I end up spending a lot of time in internal conversations with myself over whether something is a valid concern or anxiety taking a tantrum.

How Do You Have A Conversation With Your Anxiety?

Okay, so it might not be a conversation EXACTLY. It’s more a fast paced analyzing of what I’m feeling vs what is logical. It might look something like this, I’ll put the more emotional reaction in bold and my logic response in normal text:
OMG My foot is red around the stitches and it’s painful to step on now! Something is wrong!
Well, it’s only been a few weeks from surgery, and I DID walk on it yesterday
What if it’s infected? It totally could be infected right now
But…it’s not warm to the touch.
What if it’s a deep infection and hasn’t come all the way to the surface to feel warm yet?
But that…isn’t how infections work. If it was a deep infection, by the time it was red, it’d be inflamed, darker, more tender. I’d feel warmer.
You can’t trust your own judgement, what if you’re wrong?
Well, then I’ll call the surgeon. He did say to call if I’ve got concerns.
But what if he’s busy? And what if he didn’t really mean it? Can I justify calling him for just a little pain?
Okay, so how little is the pain really? Can I walk like I’m supposed to? *tries out again* Nope
What if you did something and destroyed all the work the surgery did?
Which is even more of a reason to call the surgeon, right?
But what if it’s normal healing and you’d be calling just to harass him?
It could be nerve pain, that’s what it was last time.
Which means you’d be BOTHERING him
Unless it’s not just nerve pain….
How could you let this happen. You probably overdid it and now not only are you bothering him but he’ll know it’s been ruined because of you.
Or, he could relieve my worry like he did last time. That is a possibility.
Or it could just confirm that you’ve gone through all this pain of surgery for nothing and now you’ve ruined your ankle
No….
No

NO

That’s enough. Get all the information about it. What kind of pain. How far it extends. Range of motion. Photo in case he wants it texted. If I upset him, I upset him. But better to know I checked.

And that was a short version of one morning I actually did call the doctor. The result was positive and he completely reassured me that it was really good that I called, but that’s not the point I hope to make here.

But Everyone Worries!

And that’s true! But the difference between someone that suffers from an anxiety disorder has an internal dialog they have to keep in check like that often. Remember earlier when I said it could take benign things and turn them terrifying? Surgery has a lot of concerns, and even more with EDS. But anxiety doesn’t just come about when it’s time to make you feel like a hypochondriac. It can show because of anything from a phone call to a bruise you don’t remember getting.

But stress makes any anxiety symptoms worse. It’s more than just internal dialog, it’s a fear response. Instead of just considering the emotional response dialog up there as words, consider it being felt as something worth being afraid over. Feeling as if you really did screw up everything beyond the point of repair despite any evidence to the contrary.

This can appear to someone on the outside as just being in a miserable mood and snapping, or being overly emotional at what looks like simple problems. Sometimes it appears as just being really emotionally needy and needing physical affection. It can even look like all the person does is talk about their problems and “negative” things.

I can’t speak for everyone of course, but try and keep in mind when things like that are viewed from the outside… There can be a storm raging on the inside that is threatening to take over. In situations like this we really need to learn self care.

When Self Care Can Trigger Anxiety

Sounds backwards, doesn’t it? But that’s the point. It’s an anxiety DISORDER and not just being nervous for logical reasons. Something like resting as much as the doctor told you to can make one’s anxiety skyrocket as if you were being chased by lions. OMG what will be people THINK?! You’re so lazy and worthless and not even trying!

What seems like an illogical internal conversation (and often is) send very real to someone in the throws of anxiety. What if I’ve not moved enough? I’m too much of a burden, I have to clean. I can’t ask anyone for help, they didn’t mean it when they offered. If I ask for help I’ll push people I love away from me! Everyone around me probably thinks I’m just being lazy. I know the doctor said put my foot up most of the day, but my coworkers are getting mad at me, so what if I try and work like normal and put it up with ice when I get home?

But you know what? Try and remember it doesn’t matter what others think. And it doesn’t matter what your anxiety thinks they’re going to think. What matters is that we all remember to take care of ourselves the best ways we can. To do things like call the doctors when we’re concerned or take a break when the pain gets to great. We need to remember that we’re important enough to deserve the best chance at proper healing. So what if Suzy in Payroll rolls her eyes at you. Suzy isn’t living your life so her opinion only matters as much as you allow it to. Suzy won’t have to cope if you’ve screwed something up by pushing when you should’ve taken a break… YOU will.

So please at least try to take a deep breath and take the moments you need for yourself.

In The Spirit of Self Care

Who doesn’t like chocolate and cheesecake? Click on the image below to get a recipe for a low carb, keto, gluten-free ZEBRA CHEESECAKE RECIPE! The recipe comes from another zebra and is to die for!