Warning… Spoon Shortage! Enter at your own risk!

Anxiety is a a$$h@le!!!

That may sound really weird to people who don’t suffer from chronic anxiety, but those of us that do will get it. Sure, everyone gets anxious. Everyone feels that pull of suspense that only comes from being terrified of what might happen. But for those with chronic anxiety, it is like a living being that squeezes the very life out of those that experience it day to day.

One of the biggest struggles for me this year has been my overwhelming restlessness about everything going on in my life and around the world. That may sound very broad and maybe even somewhat whiny, everyone is apprehensive about world events. I’m talking about the ingrained need within myself (and so many others) to fix/control things. These are thing I cannot fix! I can do my part. I can  advocate for people like myself, I can vote, and much more. But what cannot do is control the outcome, and it drives me crazy.

Many people with chronic anxiety are considered “neat freaks” or “OCD” (which is misleading, because Obsessive Compulsive Disorder is it’s own thing which anxiety can often be attached to).  We want to be able to keep our “world” in a little bubble and defend it from anything that might make it pop. Unfortunately, that doesn’t always work out too well. Ok, usually doesn’t work well at all.

This approach keeps us at a constant state of readiness, a perpetual tension that can be torn apart by the slightest change in our environment.

For me this includes a plethora of medical changes, worry over my sons health (it looks as though he may have a similar condition to me, on top of his other problems), worry over the rest of my husband/daughter’s health, and strained relationships with friends/family. On a global and national scale, I’m sure my concerns are similar to everyone else.

The election (both for President and my local races) has been so polarizing! I can’t get on any social media without seeing attacks from both side of the aisle. I see family members supporting hate, I see friends attacked for expressing their views, I see stories of harassment, and just the worst of mankind (this does not mean just men, it encompasses everyone). I’ve had to unfriend and/or unfollow far too many people this past year!

I’m very thankful it will be over soon, but I recognize that this election has forever changed our society. We’ve seen each other for who we are, the dirty underbelly of politics has exposed the reality we have kept hidden for years. Our fears and prejudices are out there for all to see, no matter which candidate we support!

But it’s not just politics that have me breaking apart from the inside out.

Hate seems to be a way of life now, and it terrifies me!

There is so much hate for law enforcement, African Americans, Hispanics, refugees, even victims of crimes! Where have we gone wrong?! Why is our automatic response anger? Why do we immediately gravitate to the worst possible action? Hate and fear are in control, not reasoning and compassion.

One of the biggest contributors to my extreme anxiety breakdown has been the stand-off at the Dakota Pipeline. I am part Native American (which a LOT of us are, but the side of my family it comes from has an amazing history and I am passionate about preserving it), so the desecration of Reservation lands really hits home for me! If I could physically and/or financially afford to be there protesting with them, I would! I’ve signed petitions, I’ve checked-in, I’ve shared, and I wish I could do more. Just thinking about it makes my heart hurt.

Another source of anxiety for me, has been accepting my physical limitations. In the summer I took a trip to see my sister, niece, and nephew (and great-nephew). It was extremely difficult. I miss them beyond words, and it was my first time meeting my nephews beautiful son. But I realized that travel was just not in the cards for me anymore. Or if I do, it will have to be with significant assistance. I can’t just hop in a car and drive 12-14 hours anymore. I can’t go to the beach and expect to be able to walk the next day. This is my life now, no matter how much people doubt that reality.

This fact hit home this past week as my niece married her long-time boyfriend (that I had finally met when we went to visit this summer). I couldn’t go and it’s eating me up inside! I’ve always had a special bond with her, even across the miles. I desperately wanted to be there, but I just couldn’t.

I am also very nervous about the infusions I am starting next week. I was supposed to start them a month ago, but miscommunication regarding what vaccinations I needed before treatment pushed the time frame back. I desperately want them to give me some relief, but the realist in me is trying to keep me grounded.

There’s PLENTY more things I could write here, but I think that’s more than enough to get the big picture.

My post really isn’t just a huge vent (even though it is a perk), this is a confession that people with anxiety are not just stressed. We take everything going on in our lives and internalize it. Our struggle is more than just day to day dears, it is an all consuming ball of fire that lives in the gut and engulfs us when the world closes in.

So today, I will breathe and hope the fire subsides.

On-line groups… support, friendship, and much more.

For those of us with invisible illness and chronic conditions, Facebook Groups have become a staple! Not that long ago, social networks were not considered a place for support. It was where the younger generation went to connect, share, and play. But it expanded and now allows people from all over the world to come together and find a common ground. Groups are everywhere and can be found for almost every subject. Some are open to everyone, others are closed (requiring an invitation or friend in the group to join), or secret (where the admins has to accept every request to join). Each kind of group can be helpful for people with chronic illness, especially closed/secret groups that tend to become very personal.

But how personal is too personal? Why is it that we find it easier to open up and talk about personal problems to strangers on-line than our friends irl (in real life)? I have a lot of experience with this! Even though I am very open about my pain and illnesses, there are so many times that I want to vent or complain about how much pain I’m in, but the thought of posting it on my main feed just feels… wrong. I’ll look back at my recent posts and see the last time I “complained” and think twice about hitting send. I feel like a burden to my friends and it pains me even more. So I’ve started leaning more and more on my groups for support. These are people that know what I’m going through! They are dealing with the same pain I am, so my venting isn’t an annoyance, it’s an average day to them.

It’s easy to get “hooked” on that feeling of community and join every group imaginable, but I caution against that. I have made that mistake and had some bad experiences. Some groups are extremely supportive and have people in them that offer information as much as they do consoling words. Other groups are all about drama and gossip. They commune under the guise of chronic pain support, but all they do is talk about how horrible people are to them. I cannot stress this enough, don’t allow anyone to bring you down! Whether it is on-line or irl! Venting and complaining is one thing, but if all someone does is make you feel small or unimportant, they are not worth your time. Period.

I’ve made several wonderful friends through on-line groups! These are people that “get me”, they know what I go through on a day to day basis and don’t judge me when I need to let it all out. I also know that they will have practical advice for me if I need it on certain subjects. Do I know for a fact that if I had known these people irl, that we would have been close? No, of course not. But I know we are now, and that’s all that matters.

Some advice I would give if you’re thinking about joining an on-line support group. Contribute. Contribute. Contribute. Don’t feel like you have to be a spectator, unless that is where you feel comfortable (especially at first). But the more you contribute, the better you will feel about opening up and asking for help when you need it. Contributing isn’t just posting images and/or articles. It’s commenting on other people’s posts with some insight that you’ve learned through your personal life, it’s reacting when people say they’re having a rough day, or it’s offering a virtual hug when that’s all you can do for them. You’ll find that your experience with groups will be more rewarding and that it will take less time to incorporate into the fold.

A message to my friends (on-line and irl): Thank you! Thank you for being there for me whenever I need you. Thank you for listening to me whine and moan about every aspect of my life, especially my pain. Thank you for being you!