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.

psgirls

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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Being Told to Give Up

If you follow me on Twitter you’ve learned that I found a new pain management doctor. Not because my previous one was horrid (I know you can read a lot of horror stories on various blogs) but because our vision was going in different directions. So, I found a new doctor and he’s great. My first time seeing him where he evaluated me, he had this great idea for an intrathecal pump. Now, for of those of you who do not know what this is, it’s a pump that is implanted into the flesh of your belly and where the thin, catheter tubing goes up into your spinal cord and the medicine would go directly into your spine. This eliminates the medicine having to detour into the liver, and with the medicine going directly into your spine, it also allows them to give you much lower doses of medicines like morphine, to help with the pain. This all sounded pretty good to me, minus the pump implant and catheter tubing that has to go into the spine, but the theory behind it was great. Better meds and bypassing the liver. Cool. I scheduled a trial, where they deliver the pain medicine to the spine via spinal tap to see if it will help. But I had to be cleared by a few doctors, one of which was my neurologist who hit the brakes hard. So much so that I had a head-on collision with this great idea. He would not discuss it without actually seeing me so I made an appointment and sat down to talk about things.

It began with the fact I had a seizure in January, and because he is a neurologist he knows exactly what the intrathecal pump is and how they would do it and because we have no idea why I have these seizures (undefined seizure disorder), he is afraid that I might have a catastrophic seizure during the procedure and end up in bad shape in the hospital. Okay, I thought. Do I have to wait a few months to be seizure free? What if I wait and everything is fine and schedule it and have another seizure before the procedure date? I’m pretty sure he could see the questions racing in my head by the expression on my face and that is when he stopped me cold.

“I don’t think you should have it done at all. I think you have to accept you are going to be in some amount of pain, and possibly significant pain, for the rest of your life.”

Let me say that he’s been treating me for a long time. He can be abrasive and won’t shy away from telling you he’s an asshole, but he’s the farthest thing from an asshole. What he is, is honest but sometimes honesty is not something you want to hear as much as a version of honesty that offers some hope. There was no hope in his statement and I cried with the impact it made on me. There was nowhere to turn, nowhere to hide. All I could think was:

“But why?”

He gave me a lot of reasons. The seizures. The fact I’ve had several failed back procedures. The fact I’ve tried many things already, to help with the pain that has not improved my situation. Finally, what he feels is the biggest reason: I’m Bipolar. Why is this the biggest reason and why should it matter that I am bipolar or not? I didn’t understand even after he explained it until I began to research it. Me, the person with bipolar, had to research why her bipolar was the biggest reason to give up. Why was my mental illness the sudden obstacle between me and the Holy Grail of cures?

The theory is that there is a link between chronic pain and bipolar, one which worsens chronic pain and symptoms of bipolar over time. The idea is that psychological pain comes with depression and that depression worsens chronic pain. One big vicious cycle. In learning about bipolar you understand that physical pain is often an underlying symptom of anxiety or depression. For example: “Muscle aches, chest pain, gastrointestinal cramping and other types of pain can be symptoms of bipolar disorder. They can also coincide with bouts of extreme fatigue. Aside from the emotional trauma of depression, these symptoms can only add to the burden, especially since they may not go away with traditional pain treatment methods.” [https://blogs.psychcentral.com/bipolar-laid-bare/2016/09/bipolar-disorder-is-linked-to-chronic-pain/] As I read, I was kind of blown away. It suddenly hit me that maybe bipolar and chronic illness were a tandem unit in which the one (bipolar) made the other (chronic illness/pain) more difficult to treat and perhaps, vice-versa.

It’s been almost two weeks since that appointment and it feels like I’ve spent all of it ruminating on his dispiriting words. My mood has been terrible. I’ve been at turns, bitchy and emotional and picked a fight with my husband for no reason. When I apologized to him and we talked about it, I explained to him all of what I was thinking and blamed it on my bipolar. He shook his head and simply told me:

“You’re upset because he took away your hope.”

This shouldn’t have been such illumination to me but it was. While I understood everything that my doctor told me and everything the research, I had read concluded, does it give someone else, like a doctor, the right to single-handedly, extinguish the possibility of hope? Not for me, although I understand his intent and I don’t think it was maliciously done. The problem lies in the nature of chronic illness and chronic pain and how it affects the psyche of the individual suffering. It diminishes hope. The physical deterioration can be slow for some people, where things that we could do are slowly taken away one-by-one, while for other people it can feel as though you went to bed healthy and woke up in such debilitating pain that you can no longer walk, but the hope that ebbs away is real no matter which side of the spectrum you are on and I believe we need every shred of it.

I understand that this intrathecal pump may not be the best option for me. In my personal case, with seizures of an undefined origin, it may be too risky. I’ll even extend this understanding to the bipolar disorder, but only because I understand on an intellectual level that it may have a hand in my pain. However, as to what role it may play in this drama, among which all these comorbities of mine play? The jury is still out until I see some very thorough studies. I can see that on one hand it may unlock many mysteries pertaining to chronic pain and illness, but on the other I am afraid it may de-legitimize the pain and illness of many who suffer if we simply chalk it up to the by-products of mental illness. My final thought here, which was the purpose of this post to begin with, is that I don’t believe it is right for anyone to take away the hope of a chronic illness/pain patient. Hope is one of the few things we have left. It is sometimes the only thing that keeps us going. If you are a doctor out there, reading this, please, protect your patient from un-needed or dangerous surgeries, but do not take their hope away.

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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Chronic

Chronic mental illness defined: A mental disorder, also called a mental illness or psychiatric disorder, is a diagnosis by a mental health professional of a behavioral or mental pattern that may cause suffering or poor ability to function in life. Such features may be persistent, relapsing and remitting, or occur as a single episode. [https://en.wikipedia.org/wiki/Mental_disorder]

 

It is difficult for many people to wrap their heads around mental illness as a chronic condition. There is this idea that if you are a good patient, taking their medicine as prescribed by your doctor that you will be cured and return to normal. As a person who struggles with chronic mental illness, I can tell you that this is not the case. As the term chronic implies, this is long-term, which means the rest of your life. Medication can help with symptoms and truly be life changing, but there is no escape. You may even be perfectly well-managed for 30 years, however, whatever form your chronic mental illness takes, it will be with you forever and that means for some, every day is a constant battle with symptoms. What I like about this definition is that it points out this can be relapsing and remitting or occur as a single episode. There is no one-size-fits-all when it comes to mental illness. Each person experiences it in their own, in a very intimate way. Here are some things to know if you have Chronic Mental Illness.

 

  • You will grieve after diagnosis: I find that mental illness takes up this grey space, that chronic illness also shares, where you don’t have a cure, but you are not going to die and you may even look good enough to pass for healed, but you aren’t. All it takes it that one trigger to breathe life into something that might have been dormant for years, or not even a trigger, but just a shift in moods that is enough to pull you under. You are going to grieve life as you knew it, being gone. You are going to grieve a life of simplicity, where you didn’t have to take meds and your moods made sense. But you will make adjustments and you will find a way to live with your mental illness.

 

  • Your mental health is not just about you: This is something not everyone agrees with and I am by no means speaking as an expert, but only personally. As always you must follow the instruction of the doctor whose care you are under. However, for me, my mental health wellness was important to many lives around me who I touched. My husband, my children, and my parents, as well as my near family which would include my brother and sister in-law and mother and father in-law. This meant that finding a place where I could take care of myself, and my children and be in a good place and not wanting to hurt myself was immensely important. It meant that for a while, I took my medicine religiously and sacrificed much of my own freedom of thought towards how these meds made me feel until I could make needed changes with the guidance and support of my family. I found a new doctor who was able to stabilize my behavior with less medicine and I won my creativity back. We have to be there for those who love us and depend on us. We also have to advocate for our best mental health and if that means seeking a new doctor you must.

 

  • Medicine is not a fix-all: It took a few years of living in a fog of medicine, where days and weeks passed in a blur in which I was not participating in life that two things happened: I found a new doctor and I researched other ways in which I could help to regulate my mood. I discovered meditation and I re-discovered writing. These have both been integral to my healing as well as something that I can do when I feel my mood slipping. Since then, I’ve also learned how to practice Mindfulness. It’s not hard and it doesn’t take that long. But for me, it is the anchor that I need when my seas begin to churn. Mental illness never leaves us. It is this constant and sometimes sinister under-current through-out our lives, but we can manage it in combination with medicine and many other ways that can help us live in peace.

 

  • Educate yourself and educate those closest to you about your mental illness: Everyone has their own perception about mental illness. Even you may have had your own ideas of mental illness until it touched your life. Sadly, there is still not enough candid conversations about mental illness and while there is better understandings, we need to open up about this so that children and teens and young adults can come to us and talk to us about what they are feeling, without feeling like there is something broken about them. You need to educate yourself and your friends and family so that they can begin to comprehend what you are going through and be there to support you. It is vitally important to your continued and long-term well-being, that you have people around you who will be able to see when you might be slipping, when you can’t see it yourself.

 

  • Don’t stop your medication without doctor supervision: I feel that this inclination to want to stop medication is partly to do with our societal taboo in regards to mental illness and partly because we don’t want to feel like we are dependent upon this medication. It makes us feel like we are not being our authentic self if we have to rely on medication to be “normal.” But the medication is actually helping us to be our authentic self, where-as our mental illness, is the deception. More importantly, suddenly stopping your medication could send your entire body into tilt. Anti-psychotics can often leave you with nausea and feelings like you are in withdrawal. You might catapult yourself into insomnia on top of shifting your mood. When I told my psychiatrist, I wanted to go off medications for a while, with his supervision and continuing my monthly visits, he supported me. His support also hinged on my finding other ways to manage my moods, as I mentioned above.

 

  • Don’t fight this battle alone: You need a support network. You need people you can trust, who will be there for you when you need them and who will advocate for your health, when you cannot. If you do not have someone who can advocate on your behalf, I would suggest making your doctor fully aware of what it is you want, in terms of medication should your current ones fail. I would also keep a medical directive, an advance healthcare directive, also known as living will, personal directive, advance directive, medical directive or advance decision, which is a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves because of illness or incapacity. [https://en.wikipedia.org/wiki/Advance_healthcare_directive]

 

This isn’t just about a DNR, but making sure that your doctor is aware of what you want should you be incapable of telling him. Even if you have family and support, it’s always a good idea to keep this and make them aware of it so that emotion doesn’t cloud what it is you want. It may seem extreme, but when I spent time in a mental health facility, there was a patient whose family was extremely distraught with her decision to undergo electroconvulsive therapy (ECT), and who attempted to stop the facility from doing it, citing that she was ‘not in her right mind’ but her advance medical directive made it impossible for them to stop it.

 

 

As always, thank you for reading and supporting my blog. Please share if you know someone with chronic mental illness who might benefit from it. Or share it with their friends and family.

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.