For Those Who Are Imperfect and Still Struggling: You Are My Heroes

In a land of inspirational TED talk speakers, those who’ve gone through the chaos of mental illness and come out the other side as motivational speakers, do you find yourself still struggling in your 40s and trying to keep it together? You aren’t alone.

I’m not bashing those TED talks either. I applaud each and every speaker who stands up there to motivate and inspire the masses. It’s amazing and I listen often. What I am saying is that sometimes, for a lot of us who are still struggling, it’s okay. I’m not saying that every speaker has their lives in complete order either, but there are times when I listen and it feels like an auditory version of Face Book or Instagram. It’s their filtered, selfie-version. Sometimes, I want to hear someone up there saying that life is fucked up and they don’t have it together and every day is a struggle but they are managing. They are managing day-to-day and hour-to-hour and it’s okay. Because those people- they’re my heroes too.

As I brain-stormed about this idea I reflected on my own posts through-out my blog as well as other writings I have done for other sites. I wondered if I appear the same way that some of those TED talk speakers do to me. Flawless? Put-together? Was I only allowing my readers to see a fraction of what is my challenging life? The answer, I think, is a complicated one and maybe a complicated one for a TED speaker too.

Whether it’s a PodCast, or TED Talk, or a Blog post; Instagram or Twitter Post, the audience is never getting the full picture. They don’t see us 24/7 (thank goodness!) and so there is never going to be a complete image. I believe the whole point of TED talks are inspirational speakers. I know my blog is meant to be uplifting and while I have received comments from readers who’ve called me inspirational, I didn’t set out to be and I certainly don’t feel it from day to day. I am just a girl who is trying to get by, from one day to the next, successfully. There’s a lot that goes into that.

My purpose in this slightly rambling post is this: It’s not all sunshine and rainbows for anyone. Don’t let anything you see, hear or read make you feel badly about yourself. Don’t sit there and compare yourself to someone who maybe had similar things going on and wonder why you haven’t made it out to the other side of that dark tunnel. Your circumstances are never the same as someone else and so you shouldn’t add anymore pressure or grief into your life. I know it’s not easy. Here I am all judgy on TED talk speakers like they set out to shame us when what they are doing is quite the opposite. But I think it is very easy for us to see only part of the story and maybe that is human nature.

As I said right from the start, you aren’t alone. I am no where close to living an idyllic life. I have not yet reached enlightenment! Each day is a renewed effort to make it through, what is, a very challenging life. Like you, I have many imperfections and flaws, some of which I was simply born with, like my mental illness and health issues. Others, are of my own doing, like my brooding, or my inability to say no even when I should. I have external challenges like you too. These are things like my children, who while adults (in varying stages), and still living at home, continue to test my parenting skills as I navigate from being parent-to-child, to advisor-to-adult, while always remaining that loving Mom to them. It’s tough. I have bad days, just like you do and sometimes…I fail miserably. But when I do fail, I try very hard to learn from that situation so that I do it differently the next.

One of the things I don’t talk about as much as my chronic illness and pain, are the mental health struggles. I think it’s easy to forget when it’s not brought up, or when we hear an inspirational talk about how they put their lives back together, that the mental illness is still there. It didn’t go on vacation, or disappear and it certainly hasn’t been cured. What has changed is how the person has learned to deal with it, recognize symptoms and use tools that they have learned to cope with it. Don’t be sucked into some false idea that because they are up there talking about it, almost as if it is in the past, that it is in the past. The only thing in the past is the chaos that was because they didn’t know how to deal with it. That is what changed. I deal with my bipolar every day. I live with my anxiety and OCD and PTSD every day. I haven’t quite gotten to that place where I cope with it and know how to deal with it. Some days aren’t great and I forgive myself for that and go on. Each day gives me the opportunity to learn how to deal with my mental illness and that is all I can ask for. A new day.

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When Calling the Doctor Feels Like You’re an Inconvenience

Scenario: It’s been roughly three weeks since you’ve seen your doctor. He/She prescribed new meds and you think you aren’t tolerating them well. The scenario could be anything you like, but how you question yourself remains the same just as your reluctance to call the doc up.

 

In my scenario I use the word think as a descriptor in how you are tolerating the medicine because in the grand scheme of the rainbow of symptoms, we, as chronic illness patients can sometimes feel, it is not always easy to determine the why of an onset of new symptoms. It is also difficult for me, to decide whether or not to call the doc and share with them the symptom, out of fear that it is all in my head or not really worth the docs time, and that it will go away in a couple of days. If you are like me there is a certain amount of agonizing before calling the doctor. You have a mental checklist that you have to mark off, nearly all the boxes, before it is deemed legitimate enough to call the doctor. Alright, maybe it’s more like guidelines, but ultimately, it’s a way that I feel my concern is serious enough to call the doctor.

But what is serious? What is serious to you and me are probably different, and what is serious to a doctor is definitely different. I’ve also seen enough doctors that I feel I can make the statement that, male and female doctors can see things differently. This isn’t a blanket statement, just an observation from the many doctors I’ve seen for myself and on behalf of my children. This confusion, as a result of differing bodies and differing doctors can make navigating what to do when something new crops up, very difficult. So difficult in fact, that I spend quite a deal of time stewing in my own anxiety, working myself up and probably making it worse. I wish all doctors made it easier for chronic illness and chronic pain patients to come to them when they had concerns. For example, my rheumatologist gave me her email. This is a great source of relief to me because I can bypass the staff and nurses, trying to explain what is going on and just  leave a message for her. Then, she can email me back advising me if I should come in for a visit, or something else I can do to ease the problem. This may not be something every doctor can do for every patient, but there should be some way bridge this difficulty. Life is already so difficult trying to manage chronic illness/pain. The majority of us come with comorbities that include a staggering number of symptoms that aren’t always there but fluctuate. It’s also pretty common to experience new symptoms that weren’t there before. For instance, I have developed an allergy to adhesive. Never had an issue before and I’ve had a lot of experience with them. It’s annoying.

I wish there was a way to improve the doctor/patient relationship so that the patient doesn’t feel like they are bothering the doctor and the doctor doesn’t feel like the patient is calling all the time. I do understand the need for a doctor to have some off time where they aren’t on call every day and every hour. I also think it is important that the patient feels they can come to their doctor with issues and not feel like they are troubling them. I don’t mind waiting until the end of business hours when they are not busy caring for other patients to get a call back. I don’t even mind if they just leave me a message. But I’ve had doctors not return my call for days, after which I had to take myself to the clinic, where I ended up needing additional meds. I’m not saying I know how to fix this issue, but I think it would be great to open up a discourse with the input of patients, to see how it could be fixed.

 

What I Hide

(from my friends and family)

About My Anxiety

Though any group gathering can make me worse, what stands out right now is the holidays. That time of year when people have parties, families get together and the stores become a treacherous gauntlet. There are some people who thrive during this insane season, while others, like me, need to ready the mithril armor in preparation.

In my head, I know it shouldn’t be so difficult. Unfortunately, the rest of my body doesn’t seem to be aware of that; they didn’t get the memo, I will have to send a stern letter to management. Oh, wait! That’s me. At any rate, the moment I find out there’s some kind of gathering I have to attend, friends or family, the panic sets in and there’s an incredible amount of mental prep involved. This is partly because I’m ashamed of my anxiety and partly because I feel guilty for it.

1.)  Mental Prep

Here’s how a typical mental prep goes:

“Alright, Liza. Auntie and Uncle are flying in. Mom’s having a bbq and you need to look decent. Enough to pass Mom’s critical eye and enough that I won’t provoke any questions about my mental health. I also have to make sure I fly under the radar of Auntie and Uncle, which I am never certain I do, but they’re always good about not saying anything.” The scenarios will change, but it’s always the same basic idea. I want to appear as normal as everyone else. But I also want people to see that I do have limitations, but that I am still me. I’m a girl. I’m complicated! The mental prep, all humor aside, can be exhausting in itself.

2.)  OCD Worrying

I fret for weeks what I am going to wear. And that is if I know way in advance. If I don’t and it’s something sudden, where I didn’t have time to play, it’s worse. Even when I finally decide on something, I’m not happy. Too tight, too hot, too frumpy, or the always popular, I look fat. Anything to criticize myself and my choice. But no one, aside from my darling Mister, will know how much I worried over everything.

3.)  Gearing up for Conversations

This sounds benign right? I assure you that it is far from it. It’s basically three parts. The first, questions about my health. The second, what I plan on doing with my life. The third, casual, random conversations that should be easy but because I am hyperventilating about one and two, it never is. And, it’s always worse when I don’t know the people I’m around. Alright, so the first question about my health always stumps me. Do I answer honestly? Or will this provoke to much pity? Do I lie and possibly elicit the opposite response which is anything between apathy and skepticism? You might think this is harsh, but t is universally known that someone trying to acquire disability shouldn’t be happy, shouldn’t enjoy anything and definitely shouldn’t laugh. Let’s slide into home with the last, my life’s work- which couldn’t possibly be writing because I don’t get paid for it. Basically, this is just some glorified hobby of mine too keep me busy while I wait for disability. This is truly my least favorite topic of conversation because there is no winning. I could tell them I was being featured in Time or that I was Oprah’s newest favorite thing, and the reaction would still be, “That’s nice dear. When are they going to pay you?” Finally, I don’t do small talk very well. I hate, hate, hate, having to do small talk with someone I do not know. I have no problem sitting in silence and staring at them uncomfortably until they leave.

4.)  Can You Bring Something?

I am lucky that I do not typically host any event at my house. We’re far too small a space for the six people already occupying it so there’s little reason to torture everyone else too. But it usually means I have to bring food and while I don’t mind, I often worry about what to bring. Thinking about it as I write it, I am cognizant of the ridiculousness of this worry and what I put myself through, but it is what I do. I worry about the dish pleasing everyone even though I consider it divine intervention of some kind when I please every palate in my own house. I worry that if it is too simplistic of a dish it won’t be pleasing enough and yet, if I make anything too complex, I know that I will need help or that I will end up exhausted.

5.)  The Anxiety Over Having Anxiety

Finally, and I made this the last thought not because it’s the least of my anxieties, but because I want it to linger in your thoughts.

It’s hard for people who do not understand anxiety to comprehend all the stressors we go through, sometimes just getting out of the house. Yes, just to get out of the house. I’m now sharing a little-known fact about me that not even the Mister knows. On bad days, I can’t leave my house. When I used to work, to compound my misery and guilt over missed days because I was sick, there were days I just couldn’t leave my house because my anxiety was so bad. And, what is worse, is that logically I get it. I’m willing to bet we all do on some level. Stepping out of the house won’t kill me, but my body and the racing heart and the inability to breathe and sickness and nausea I feel, tell a whole different story to my brain. I’ve tried to leave my house and gotten as far as my car, locking the doors as I sit inside and hyperventilate myself into feeling that impending doom. I don’t want to feel like that and I just jack up the anxiety and stress even more when I try to logic my way out of it. I wish there was a way I could be free of it and maybe I will find it one day, but until then, remember that we don’t want this. Remember that before you make fun of someone for being anxious or diminish what they are feeling by trying to rationalize it for them, as though they didn’t already try. Saying things like, “It’s all in your head.” I may know that. I may know it in every cell of my body, but when my heart is pounding and I’m struggling for every breath and the tears are rolling, I just don’t give a fuck. I just want you to hold me.