COVID-19

PLS2

The Realities of COVID-19 for You and the Same Realities for Me

We interrupt this regularly scheduled blog with a word from our author:

During this COVID-19 madness, which has become the New World Order for at least for the foreseeable few weeks and which feels like we’re all living out some surreal, Quentin Tarantino movie, there are still those among us who feel that this is all a wild over-reaction to something no more worrisome than a cold. I’m here to tell you that for me, COVID-19 is something much more worrisome than a simple cold.

worry-stickman

As an immunocompromised person, with several autoimmune disorders, I fit within that 20% high-risk group that would find themselves in danger should they develop this illness. I’ve considered this deeply from both an intellectual perspective and an emotional one. I’ve accepted that if I were to get sick I might not be able to beat it and that’s okay. I know you’re reading that right now thinking “What the actual fuck? What do you mean you wouldn’t fight? You would just give up?” No. That’s not what I mean. What I mean is that my body is not equipped to fight this virus and gives a whole new perspective to “Survival of the Fittest” for me, and others like me. The kind of perspective that forces a wife to choose to tell her husband, “Please understand darling, I may not get through this.”

 

darwin

 

I am not a soldier, but I am a soldier’s wife. And I remember when he prepared me for his deployment into a war-zone; all the potential disaster entailed and how my mind exploded with worry about a life that could potentially include one without him. How all of our future dreams could be snuffed out, and at every turn where I had always seen him by my side, he could be gone in a puff of smoke. All of this, in a cruel bit of irony, was now in reverse, and I saw that haunted look in his eyes instead and it killed me. I’m not a soldier. I wasn’t trained to go into battle; I wasn’t trained to expect or be willing to die and I wasn’t trained to potentially have to say goodbye. Having to look into my husband’s eyes and tell him that I might not make it was the most difficult, most gut-wrenching thing I’d ever had to do. But I certainly realized that day his job was much more difficult than I ever gave him credit for. I realized that no one can teach you to be ready to say goodbye.

 

coupleserious

 

If you don’t have to be worried about Covid-19, you should count yourself lucky. If all you have to be concerned with is washing your hands for 20 seconds while singing “Never gonna give you up, Never gonna let you down, Never gonna run around and desert you. Never gonna make you cry, Never gonna say goodbye, Never gonna tell a lie and hurt you,” then life is good. If all you have to do is focus on your family, make sure they are safe and practising good hygiene, and if all those you love are not in a high-risk group, then life is cake. The maddening, hoarding or opposite, disregard and denial are truly perplexing for me, however, ultimately boils down to the same common denominator: a lack of empathy for human life other than your own. You could say this is self-preservation, but how much toilet paper is truly required for self-preservation?

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While I am very much a realist in regards in regards to this situation, I’m not a fatalist, despite my acknowledgement and even acceptance of possible death and I’m hopeful that I will neither contract COVID-19 and if I do, that I will recover. Having been through so many frightening surgeries, experienced so many difficult pregnancies and given birth to two, tiny preemies, and now, living with these autoimmune disorders and chronic pain, I’ve learnt to accept life and death without prejudice. We’re here on this planet and it’s a one-way ticket. We get to enjoy so many beautiful experiences and I have. I’ve been so incredibly lucky. I have no regrets. I’ve lived on my terms and I’ve done things how I wanted and if I didn’t make it, it would suck but I wouldn’t be angry at the universe. I want to die on my terms and with whatever time I have left, I want it to be with my family and I want it to be peacefully. But there’s still hope in my heart that all this will pass and that we will learn from it.

beautifullife

 

Learning from this is how I want to end this. We all may have our thoughts about COVID-19, but I think it’s very important to understand that there are a whole array of possible virus and germs (new and old) out there, lurking and waiting to find a host. As you have learned, it only takes one person to start a pandemic and it can spread very quickly. Once it has spread and once it has a foothold, things become very challenging to deal with. Not only does treating the disease become difficult to manage but you have economic repercussions and citizens who begin to feel that there is not enough being done to manage a critical situation. We the people, have to implore our government of the vital importance of Public Health and making sure it is properly funded and equally so, the CDC. We need to make sure that our Healthcare system is placed at the forefront of thought and no longer neglected so that people can get more than just adequate care. COVID-19 should be a huge wake-up call for the public, the healthcare system and the science community. If people continue to deny the gravity of the situation, I truly believe this will happen again, and next time we may not be so lucky.

wakeupcall

I Want My Old Brain Back

Other Wistful-cisms…and Conclusions

 

I want my old brain back. You know the one I’m talking about. The one that could remember an entire grocery list on her own. The one that didn’t need to write everything on post-it notes or List-App’s on the phone or computer. The brain that made me a pretty successful mother of four small children, under the age of 5 and then when they got older: returned to school and later on, returned to work as well. There was a lot of juggling going on and I was managing alright. Looking back on it now, what I saw as overwhelming was stressful, but not as overwhelming as it would be for me now. It amazes me the volume of information I could store in my memory without needing to write it down. Entire lectures got banked up there with little need to study. I could remember my medication (for the few I took) without needing to write it down or needing an alarm on my phone. I stored in my brain at least five family and friend’s numbers and now I can only manage my husband, the rest are in contacts on my phone. Some of this can be attributed to getting older, and our lives stored on our phone, while others are truly a memory issue that is a direct result of my autoimmune disorders. Many of us are familiar with brain fog; this is like brain fog on steroids that can be positively alarming.

lotus

The clarity is gone. The crystalline keenness in which I had been so accustomed to seeing things had now dissolved into feathered edges that forced me to squint. It makes me angry and frustrated and deeply sad because everything that I want to do well, like sitting down to write, which I love, is twice as hard. Words don’t just fire off the synapses like they once used to. It feels as though they are blanketed in a thick, low fog and I have to search for the words, sometimes using Google, or the Thesaurus like a fishing rod, several times to hook and reel the right words I am searching for. There are times I will slam the laptop shut, frustrated that this is how things have turned out. Frustrated that this is my calling and that the universe has seen fit to throw in another challenge as if life itself weren’t challenging enough. But I refuse to allow it to rob, what it is I love. If I just lay down and die, it wins. I’m sorry, but if there’s one thing that people with chronic illness have in reserve is strength.

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I want my health back. I’d settle for my health at my 30’s. I had migraines every few days but now, when I get a migraine on top of everything else that makes my body feel like someone’s punching bag, it makes me feel one hundred times worse. I want the freedom of being able to eat what I want and not have to worry about it making me sick to my stomach. You forget about how food makes you feel; you forget your vanity and about the calories because you’re losing weight from the terror waged every day in your digestive system and all you want to do is enjoy food for the sheer sake of pleasure because food has now become your Moriarty. Worse than that because you can thwart your nemesis, but you can’t thwart food. Food is life.

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I miss my old body and freedom of travel. I want the luxury of being able to travel whenever and wherever I want and not have to take into consideration my illnesses and how travel will impact my body or how the stress of everything will tire me out or be too painful for me. I want my 20’s and my 30’s when I could run and jump and climb and do yoga. I wake up in the morning and the first thing that greets me is pain. There are different levels of pain: some is throbbing and aching in my joints and muscles, while others radiate and spike down from my lower back down my leg. It’s not something I get used to and I have to breathe a little humour into it, thinking, “Well, if I ever wake up and not feel pain, I know I’m dead.” A little dark humour, but that isn’t anything new with me. People would probably find it surprising to hear that I would like to go out more. I am most comfortable in my house, given my anxieties, but there is still an explorer in me. However, because I feel fragile and I’m afraid of unknown terrain hurting me, I distrust going out. Hence, missing my old body and freedom of travel.

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I miss unfettered laughter, a quiet mind, a carefree spirit. Did I ever have these things? I’m 45 years old and when looking back on my life and grasping at memories of my childhood and teenage years and older I wonder if I ever did truly have these things. Was I shaped by a bipolar mind with anxiety? The PTSD is a condition that was developed, but surely, I was a clean slate at some point? But the truth is, I don’t think the slate was ever clean. And still, I would take it over some days now, because I can taste the levity on my tongue; the sweetness of it and recall the serenity and carefree spirit that allowed me to take chances I don’t think I could take now. Mental illness paints things a shade darker. Creates shadows where there aren’t any or ought not to be any.  I can briefly grasp at what was during manic episodes, but it’s never right. They’re either pale comparisons or too bright and too clean. Like I jumped into Wonderland. I wonder what it’s like to be in a normal head and experience emotions normally and not acutely because as I miss the unfettered laughter and quiet mind, I also miss the natural ability to arbitrate emotion. Instead, I feel with every atom of my being- every pore. I love with every ounce and feel with every tear, those losses that may be minuscule to someone else, are devastating to me every time, taking a bit of me with them.

lotus

I want my old brain back, and my old body back and- but I always stop. Because whining about it and venting about it is different than actually getting it back. It’s necessary to do. After all, you have to grieve what you’ve lost, because in a very real way you have lost a part of yourself, but in another way you’ve gained a different part of yourself and that is the part, I’m not willing to let go of, as much as I might complain. Why?

lotus

Because my chronic illness, while being a pain in the ass 99% of the time has taught me three very important things: Being Compassionate toward others, Listening without Judgment, Living Life Despite The Pain. It’s pretty simple and while I could probably add more things, these are pretty much the foundations by which I try to live my life. It’s not always easy; I’m not a saint, but I try. Compassion is not something I find difficult, especially when encountering so many who find it difficult to be compassionate toward me. I’m already naturally empathetic. Listening is almost as easy, but listening without trying to interject opinions or thoughts and just listening to a person is more difficult. People often want to speak about how they relate to a person’s situation, or how they would deal with it, or how they feel about it. The keywords here being they/themselves. Listening and focusing on them, and not yourself is more difficult. It is something I work on every day- not making it about me. Living Life Despite Pain, of just Living my Best Life is strange, the most difficult. My life has been focused around my family- my husband and four kids and learning how to live life in a way where it also makes me happy- where I am doing things so that I thrive as well, feels selfish. But we need to make the most of every day we are living on this earth, so that is what I am working on.

 

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Curveball

Every now and then I go completely off topic from what my blog usually covers. I’m human, right? And there’s a lot going on up in this noggin’ besides what I’m usually obsessed with, and that’s, of course, chronic health. But there’s something that ties in very close with that, that was very much the brainchild of this blog and that also ties in very closely with mental health also and has kind of crept it’s nasty way back into my thoughts recently.

 

Weight.

I think it’s probably been the subject or obsession of every woman, at some point of their lives and I think most all of us have some degree of an unhealthy relationship with our body and our weight. For me, my body image was always entangled with a number. A number defined how fit I was, how beautiful I was, how healthy I was. That number, in turn, became the object of my obsession and it didn’t take long before I was caught in a very dangerous game of purging and starving in order to be thin. I think at my thinnest I was in the ’90s and that was after two children and feeling like I had the illness beat. I didn’t. The illness simply shifted its centre.

Twenty-something years later, many more health problems than I’d begun with, and I’m about 30lbs heavier than I’d like to be and that’s about 30lbs less than I was at my heaviest. Several major surgeries, not accustomed to being sedentary, eating more than I used to out of depression and I packed on the pounds. The first 30lbs were pretty easy to shed because, well, let me be completely frank here. I am a professional when it came to starving myself, and what I didn’t starve, I purged and 30lbs came off lightning fast. The rest has kind of stuck around for the last few years and I’m pretty desperate to lose them. But my body has changed since I was in my 30’s. I didn’t have my left hip replaced, the lower lumbar spinal fusion and sacroiliac joint fusion and I didn’t have the gut issues, fibromyalgia, rheumatoid arthritis, degenerative disc disease, or psoriatic arthritis or the ankylosing spondylitis. I still had the migraines, but you throw a good migraine into the mix now and I’m just down for the count. I can do some yoga, but the yoga I can do is not designed for weight loss. It’s designed for gentle or deep stretches and helping with the hurt parts. I think of myself as an excellent researcher, given what I do for a living and I can’t find anything on what someone like me can do to lose weight successfully, without exercise, and as someone with a history of body image disorder, it’s torture. But you don’t have to have experience body image disorder to feel the pressure. All you have to have experience with is being a woman and men feel a lot of the pressure as well.

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We are bombarded with thousands, if not millions of images of scantily clad, photoshopped models on a daily basis. Smooth flat belly. Beautiful, bountiful breasts. Satiny skin. Tiny waist. Hips not too big. Ass plump but not too big. Thin here. Curvy there. Combinations that are simply not possible with genetics. This onslaught of images, that extends to movie representations, begins from childhood through our teens and whether we realize it or not, we are constantly judging ourselves and comparing one another against these fictitious representations of what women should look like. The outward judgment of one another is brutal, but the inward judgment that we hand down on ourselves might as well be labelled savage, with a side dish of merciless and level of sadomasochism that would make Mr. Grey pale in comparison. Any woman knows this. You know this. And yet every day we go out there and we inflict the pain of judgment on one another and ourselves without even a second thought. Some of us even inflict this pain on another girl/woman, in groups, gang-style. Abusing and harassing viciously, in person and on social media. It’s really not surprising so many women have issues with body image that leave them susceptible to other problems.

OCD scale

But what happens when a girl, like me, finds herself trapped in a body like this, with no way out? Ever toss two cats into a burlap sack? Only one escapes alive. All humour aside, it’s hell. I don’t own a scale. My daughter does, but I don’t and I usually forget it’s here. I get weighed every 4-6 weeks, for a variety of doctor appointments, and while I am aware of the numbers, the numbers don’t rule my life, the way it would if I lived with the scale. Numbers are very bad. They trigger my OCD and I can get very wrapped up in them, which leads me to my other option for weight loss in my current condition: Calorie counting. The #1 way to effectively lose weight in my current condition, might as well be a nuclear bomb. I was perusing some diet plans on Pinterest and just looking pushed my heart rate to 110. How do I know this? I got an alert from my happy little Apple watch. Some days I really love my Apple watch. Other days I just wonder if I was better living in blissful ignorance. My point here being, I feel like there is no option for me and it leaves me feeling helpless and angry and depressed. I am not without the drive and I feel like I have researched quite a bit, but it’s also exhausting being me and it’s a full-time job just researching all these different methods that -abled bodied people can do to transform and lose weight. I get enormously discouraged and on top of all of this have to fight those old tendencies not to starve myself or purge (though with my current GI issues, it’s a lot less tempting) until I’m more or less left with option C, which is just trying to accept me, for me.

NGU

You can see where this is going right? The vicious circle of doom? I’m not sure whether or not to call this irony or tragedy or maybe a dark comedy, but what I can say is that it sucks. Before I was too young to understand everything, my brain was being blitzed by images that would alter my perception of myself, leaving me to seek this impossible perfection that would never come to fruition. Now that I understand this, my psyche is already damaged to a point where I may intellectually understand this but I struggle when I look in the mirror and then as an added insult to injury, I am chronically ill to the point that exercise as I once knew it is a dream and so I struggle not only with my illnesses, but my weight and how I see myself and I often feel trapped. That is one hell of a curve ball I never saw coming at 13. But, I’m not the kind of person to just give up. In fact, it just makes me angry, which gives me just enough energy to keep on researching. If I find the answer, I’ll let you know.

As always, thank you for reading and being a part of my world.

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The UN-Glamor of Anxiety

Are you looking at UN-glamor and wondering why? Does it bother you from a purely grammatical perspective or is it causing you to pace and pull out your hair, possibly making you twitch?

Anxiety can range from mild to severe, some people function very well with it and others don’t, but the interesting thing about it is that we’ve all experienced it. It may have manifested in the anxiety we often feel as children when we are first separated from our parents or before texts. These are things that are common to feel anxious about. But anxiety can quickly become a problem which is all-encompassing and one that can make day-to-day life, difficult. Anxiety before a test, that causes the individual to vomit repeatedly, is not average anxiety. The anxiety that comes over you like a dark cloud and makes you feel as though there is some great, threatening danger and prevents you from going to work (which I have felt), is not average anxiety.

Anxiety can also be a by-product of other things like chronic illness or OCD (Obsessive Compulsive Disorder).  Why you might ask, would chronic illness spawn something like anxiety? In my personal experience with it, because of the unpredictability of my symptoms, never knowing how I would feel from day to day and the possibility of needing to call off work sick and lose my job, made me incredibly anxious. In dealing with OCD (Obsessive Compulsive Disorder), there was the anxiety brought on by shame.  It was being cognitively aware that my feelings were irrational but unable to stop feeling it. It was being afraid to go in public and carry on with my normal activities because I was afraid of having a panic attack brought on by my anxiety of certain situations. It was anxiety brought on by just attempting to carry on normally, and knowing that my attempt at illusion was failing and shattering beneath the weight of it all.

The-Side-Effects-Of-Anxiety

What angers me most about the perception of anxiety is that it’s somehow this adorable little quirk in women, which women use as some kind of sonar device to attract potential mates. Because of course, women need saving, whether it’s from the “bad things” outside, or ourselves. Pardon me while I eyeroll a moment. None of my anxiety, panic disorder, bipolar or OCD ever helped in the guy department. In fact, I actually attribute it to the disaster of my first marriage, which other than producing two, beautiful children, was toxic in all ways. It’s difficult to find someone who can see past the messy of mental illness and find you, under it all. I felt broken. I felt very UN-glamorous and not at all cute.

Although my focus here is women, I wanted to comment on our male counterpart. I think that because anxiety and mental heal issues are romanticized with women that it is actually the reverse for men. If we think about our society for a moment, and how men are the tall, strong, handsome ones who do the rescuing, that this idea puts men who are struggling with anxiety and mental illness in quite the conundrum. Not having any statistics handy, I would wager that many men try to cover up their anxieties much more than women, trying to appear normal and trying to have relationships. I can imagine the difficulties that this brings them and the sheer exhaustion of trying to keep up with this illusion, before they, too, shatter.

I still struggle with anxiety. Going out into stores is possible but I still wouldn’t ever step foot into the grocery store on weekends. I can’t recall the last time I was physically at the mall. I am unlikely to ever do any of the brochure-highlighted tourist attractions, and will instead opt for something more rural, less popular. My education has been something of an odyssey, I am painfully aware of my test anxiety and as equally aware of my social anxiety. My OCD is better than it was, but I freak out a little when we have to divert from a familiar route to any place we go. This can include heated arguments and tears. The bipolar is a different breed of the monster of mental illness but I am in a good place. Some days it’s harder than others. I do not view my life with my anxieties or mental health issues as glamorous, nor do I think you would. It’s been a rough, ugly road to get to the place I am now. If you are in that rough place, I would ask you to get help and stick to it. If you know someone in that place, don’t give up on them and keep trying to push them closer to help. If you don’t have these issues, I would tell you not to fall for the glamour of how they try to sell it in the movies or T.V. because it’s not anywhere close to that. Lastly, I’d ask everyone to advocate for positive mental health discourse. It shouldn’t be something anyone is ashamed of and being educated about it may mean you get help for yourself or someone else sooner.  

 

*The image is me and I used Photolab.

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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.

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.