Our brains are….special….sometimes. I wrote about this specifically when dealing with a diagnosis a while back. Some of it can be directly relevant, but I’m wanting to deal with just the things that I can share related to this stay at home order.

Those of us with a…let’s just use the term harsh, diagnosis…have all been there. I’m not going to lay a guilt trip and say “At least your circumstances are temporary while mine are more permanent”. It’s not helpful and it’s derisive. So you’re not going to see that here. I’m aware that the circumstances are quite different between a pandemic and a degenerative disorder for so many reason. But, they’re not so different that we can’t use our experiences to help each other out.

I know how jarring it is to suddenly be told that you’ve got to change your life. Nobody likes change. We don’t like change even when it benefits us let alone when it’s something that can be as scary as a life threatening virus. You’re being told to make these changes to help save lives of your loved ones, we’re told to make changes to keep our bodies going as long as possible. They’re helpful changes, and important changes, but we hate them anyway. On the flip side of that? Us zebras? We’re also here to tell you that the darkness that you may be feeling about your new restrictions is only temporary. Not only because one day this threat will be lessened, but because folks like us have learned to adapt and once again find joy in our lives despite the restrictions. That mix of fear and anxiety and dread about not being quite sure what comes next? It will fade no matter what the future holds for you.

Everyone is handling this differently. Some have performed some incredible mental gymnastics to convince themselves that there’s no risk to keeping up with their comfortable habits. Some cry in fear and confusion. Some feel numb and just sit at home and watch Netflix and YouTube. Some push themselves to help any way they can. Some sit in front of the news all day. Some get angry and defensive over any little topic. Some are overpowered by fear and anxiety. But all of this? It’s a type of grief. You don’t have to like it, but it’s in your benefit to accept it. It may sound silly because most equate grief with only death of loved ones, but you an and do grieve over a lot of other things. Like sudden and significant changes in your lifestyle.

But what can you do about it?

First? Take a step back from your social media and your news groups.

I know, it seems counter-intuitive. But sometimes we get overwhelmed in the disguise of trying to educate ourselves. There’s a very fine line between being informed and stressing yourself out with information overload. Where we learn this with EDS is that there’s a multitude of sites and groups that will ChickenLittle you into a panic about everything will kill you or every ache and pain is something devastating. So take a step back. When you do go back to it? Limit yourself to ONLY credible sources and ONLY a limited amount of time. Don’t live in the chaos. I’ve written a past article about how support groups can have a negative impact at times if you’re interested in a more detailed explanation. In general, a lot of sites are more interested in the number of clicks they’re getting rather than assisting you in your understanding. Keep up with official updates from medical folks like the CDC.

Figure out what you do have control over, and what you don’t.

I’m not talking about whether you can be comfortable going out in public with a mask, I’m talking about things like you can’t control whether other people follow the recommendations, but you can control whether you and your family do. We are forced to learn this after being diagnosed with an syndrome without a cure. We have to pick and choose what to spend our energy on or we risk falling at high speed down the rabbit hole of despair. You may not be able to control whether you get sick, but you can control how easy it is for the virus can get to you to some degree. When you hear news that upsets you or creates stress, ask yourself if there’s something you can actually do about it. If the answer is yes, decide whether you are willing to act upon it. If the answer is no, mentally put it aside. Know that it’s not out of a lack of empathy, but instead an act of self-care.

Creativity is your friend

There is a bit of truth to making your challenges into a game. It’s very easy to get sucked into a depression from being forced away from your comfortable habits into a new way of life. I was told I needed to stay off my ankle for a long time. I couldn’t walk to work, or easily do my own laundry, or even easily cook dinner. So, mentally turn it into an adventure. It doesn’t have to be a true game as one would play with a child. But even something like pretending you’re in a zombie apocalypse, can you survive? Take it as practice. Let it be fun. Have to go to the grocery store and they have a limit on the number of folks in the store and you have to only go one direction? Make it a personal challenge to get everything on your list in one run through. You have two choices, you can be that asshole that makes it harder for everyone by insisting you’re above rules, or you can alter your habits. If you (and I’m going to hope you do) try your best to alter your habits, might as well find ways to trick your brain into having some level of amusement rather than dragging it kicking and screaming.

You are not your productivity

Making tasks a game won’t fix the stress. It’s meant to help, not fix. So it’s important to remember that it is okay to not get everything done that you used to. The main thing is to put honest effort into trying. We’ve all been in the spot where the reality of our situation becomes overwhelming and we have days where we crash. Nothing gets done those days and it’s easy to beat yourself up on those days. But try and remember that this is a difficult time and it is perfectly normal to have days where your brain just crashes from the stress of such change. It’ll adapt. Just give it a bit of time and be kind to yourself.

It’s not about never being stressed, it’s about going forward despite it

However you’re feeling about this? It’s normal. Acknowledge your emotions. Let yourself feel the emotions. Let them do their thing and have their time. And then put them away and get back to work. While we’ve all had that spot where the reality of our situation became overwhelming…we also all had that spot where we were forced to come to terms with the fact that life doesn’t wait for you to be happy with your situation. You don’t have to wait to adapt to get things done. Just try your best. That’s all we can ask of others as well as ourselves. Just trying your best. It will help your brain adapt, the more you keep gong the best you can despite not being okay with it.

Use this time to communicate with loved ones

When us zebras get bad news, we call those closest to us. Most of the time, it happens that those closest to us are often also zebras. You may think that’s a bad idea because every zebra will ALWAYS have something going on that’s causing stress in our lives. However, it’s often a great way to REDUCE stress in each other because we get to vent about things that the average person doesn’t understand. The important part is that if you (or your loved one) are not up for communicating, that this is expressed clearly. There’s nothing wrong with saying, “I’m sorry, I love and support you, but today is just not a good day for me”, and declining a phone call or private message session. Right now, we’re all stressed. Reach out to you loved ones and see how they’re doing!

Don’t let being self conscious get in the way of your health

Most of us are all just a little bit vain, and generally this means that most folks are not excited about the idea of wearing face masks. Trust me when I say many us zebras know exactly how you feel when we’re told we have to walk with a cane, or wear ring splints, or wear a mask for other reasons than just the virus. But health is more important that when people snerk when they see you with your mask. You are not responsible for their reaction to you trying to protect your health, you are only responsible for your health and the actions you take to protect it. If it makes you feel more comfortable, decorate it! I’ve got a friend that’s sewing feathers into the side of hers and my other half is making me one with a plague doctor beak over a functional mask. There’s a point where apathy towards other people’s reactions is VERY healthy. If you’ll forgive my crudeness, fuck’em. Wear your mask. Refuse to hug. Insist they stay farther from you. That temporary discomfort is much better than the discomfort of a ventilator tube.

Diet and exercise isn’t for normal days only

Comfort food is great and can be an absolute necessity to keep your mental health in an okay spot. But don’t use that as an excuse to let yourself do things you normally wouldn’t. Don’t eat your feelings. I know it’s tempting. Your bored, your stressed, you can’t go out places…eating a whole bag of chips and chasing it with a cheesecake sounds satisfying. Don’t do it, at least not more than one day. You owe it to yourself with all the effort you’re putting in now, to not shoot yourself in the foot with the food you put in your body. Use this time to explore new cooking techniques or share recipes with friends who have had to eat a very limited diet. We’ve got tons of easy yet healthy foods that we’ve learned over the years. Similarly, you can’t go to the gym, but you can still find ways to stay active. Go for a walk, dance in your living room, do leg lifts while you watch Netflix. Stationary yoga is even a thing, just something!

Change something intentionally

Rearrange your living room. Plant seeds in your garden. Reorganize your storage. Your brain is so anxious over not being able to control the change being forced on you…so give it something to control! It doesn’t have to be a major task, but something you’ve wanted to do for a long time.

Take a moment to be in gratitude

No, we don’t have to be happy about it. The situation sucks. But it goes back to that whole control thing. We can all have something we’re grateful for. Something small, like being happy you’ve got a best friend to talk to. You were able to get unemployment assistance. You still have a job. You have a pet that loves you no matter what. You’ve got a good doctor that you trust. Even if it’s simply that you can be grateful that you’re still alive today. Maybe grateful for past experiences. It’s not about finding ways to make it better, it’s about appreciating what you do have. Reminding yourself of even the smallest of joys can be helpful with the light of hope is the dimmest. The joys will not erase the negative, but you’re allowed to feel comfort despite the rest of it.

Learn a new skill

If you’re stuck at home and bored of everything you already know how to do…learn something new. There’s a multitude of YouTube videos and Facebook groups dedicated to learning how to do new crafts. Now, I recommend staying away from the click-bait things like 5-Minute-Crafts because they do a lot of things that are fake and a waste of material. Pick up something easy, like cross stitch. Try something more complicated like making a pine needle basket if you live in the south, I’ll add a video for how to do it. There’s no better time than now. If you’re stuck at home with limited places to go, why not? Things like that helped me keep my sanity when I was immobile after surgeries.

It’s normal to feel anger and grief over missing out

We zebras know better than most, that it can hurt tremendously if you have to cancel plans. I wrote a whole thing about it from our point of view when it seems like we’re just being flaky or trying to avoid you. We know, it sucks, it hurts, it’s frustrating, it doesn’t feel fair. I’m not going to pretend that video calls are the same, but it’s something. Trust me…we hate it when we need to cancel plans to. But we can also tell you that it’s better than nothing and MUCH better than taking a huge risk to our health. This time, it’s not only a risk to you, but to those you love. So do what you can in ways you can. No, it’s not going to be the same. But it’s something that is safe in the now so you can have MANY more opportunities later. Don’t rely on hindsight to teach you this lesson.

Seek help when you need to

There is no shame in needing extra help. There’s a lot of therapists and physicians that have gone to virtual appointments. Call them. Make an appointment. There’s nothing wrong with getting help. Even therapists go and see other therapists because everyone needs a little help from time to time. If you try everything that you know how…then don’t hesitate to ask for help. We’re all in uncharted territory and it’s perfectly normal to not be able to handle it on your own. It’s okay.

We’re all in this together. So let’s try and remember that as best we can and reach out to each other. Help where you can, ask for it if you need it. Because even when the tunnel is dark, there’s always an end to it. There’s always a light to find.

Stay safe as you can and may we all see each other on the other side of this with a new appreciation for each other when this is all over.