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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Doctors vs Google

I bet you didn’t know there was a war brewing and in some cases being actively fought between doctors and patients and Google. What is the fight over, you might ask? Let me explain because if you aren’t knee deep in chronic illness, battling symptoms that seem to crop up new every other day, and seeing more doctors than most have seen in a lifetime, you won’t understand.

The fight is three-fold. Doctors who feel that patients are looking up their symptoms and coming to them to validate a self-diagnosis. Patients who are looking to validate a self-diagnosis. And chronic patients who possibly know more about their illness than their doctors, who feel abandoned by their doctors to more and more medications because their doctor has run into a wall and no longer knows how to treat them. 

The advent of Google and innumerable medical sites that give information about thousands of diseases and illnesses, along with other sites and blogs that are dedicated to educating people about their illness have made huge differences in peoples lives. There are patients out there who have been blown off by the medical community, who could not find out what was wrong with them, who, with the information gleaned from these various sites, have been able to go to a specialist armed with this information and finally get a diagnosis and treatment. Doctors, to some extent, feel threatened. Signs like these are popping up in doctor offices everywhere. **

Google Doctor

It states that Google, and the sites it may take you to, shouldn’t be confused with a doctor’s vast knowledge built upon their education and their medical degree. Okay. I get that. I understand that getting your medical degree is hard work. I understand that there is a certain level of devotion required to the field which gives you the motivation to put in the time toward your education. However, when you possess all this vast knowledge, from degree to experience and you do not try to help a patient, let’s say by offering some kind of treatment or admitting that you’ve hit a dead end with them, and then directing them elsewhere, there’s a problem. Patients inherently want to trust doctors. What drives us to Google are doctors who shut us down, who tell us that they know best, as opposed to the person living with the disease and who simply aim to give us medication in order to “manage” the illness. Is it too much to strive for something more than being managed? Is it crazy to think that we might possibly get some semblance of our lives back? I don’t.

In no way am I trying to belittle a doctor’s work. I understand that there are people out there who try to out-smart the medical community, for perhaps their own gains. As a person living with chronic illness and pain, where much of my life is tied up to just trying to have any kind of normalcy in my life and just being able to live with as little pain as possible, the idea of someone trying to make it up is repulsive to me. The idea that someone seeking drugs would go to the hospital to fake an illness, while not surprising also repulses me and angers me. However, it helps to put the plight of doctors into some perspective for me. I don’t, however, believe that doctors should immediately condemn a patient for using Google until they’ve looked toward themselves first, for the problem.

In a lot of ways, I feel like the entire medical community is broken. This does not mean that there aren’t hospitals and doctors out there who do what is right, but with so many grievances from patients from prescription costs to doctors who’d prefer to give a terminal patient Tylenol to control their pain instead of an opioid because of this “opioid hysteria,” we have issues that seem insurmountable. A broken system where Big Pharma is reaping millions if not billions, and patients who are suffering from neglect from doctors who don’t want to admit they can’t solve a problem. I know these are huge accusations but I am not the first one to mention them and won’t be the last. I don’t have the answers either, but I am hoping someone out there will. In the meantime, Google is still my friend because educating myself on my illness means arming myself with valuable information that can help my doctor treat me. This is the only weapon I truly have in this war with chronic illness.

 

** I was sitting here drinking coffee this morning and BAM! I remembered I didn’t insert the image. That is Fibro brain for ya!

Rant

I don’t often rant, but I had a rant on Twitter yesterday. Let me explain and set up the scene for you.

Yesterday, was my monthly appointment with my pain doctor. There’s a couple of things I can expect right off the bat when I go see him. First, he will be late. Not just 15-20 minutes late, but a couple of hours late. Though I was his first appointment at 9am, he was not even in the building yet. Second, the dialogue rarely changes. What I mean by that is for the 3 years and plus or so months that I’ve been seeing him, he’s been focused on one part of my body. He hasn’t diverged from that despite my even telling him that there’s more to my pain than that specific part. I’ve also written it down for him, outline style. Third, is that while I don’t believe he is unkind and I do believe he wants to help people, he has that arrogant, fatherly, I-know-best, way about him that makes me hesitant to speak to him any more about my pain. Typically, we go through the dialogue and I get me re-fill for medicine and go on my way. Yesterday was different.

After almost an hour and forty-five minutes or so, he came into the room, sat down with his laptop and began to go through the findings on my recent MRI report. Note here: I have had one other MRI report in the entire time frame I have been seeing him, but his explanation for why I needed the MRI and why he ordered it was because he needed to be able to show he has been looking for any changes in my spine to substantiate his reasons for giving me my medicine. Okay. That is fair and I had the MRI done. The findings were not much different than it was 3 years ago in terms of what is wrong with my spine, however, there was significant atrophy in my muscles and the spaces between discs. Again, this is not surprising for me because I have been mostly sedentary. I have been doing yoga, but it’s a more sedate yoga that is for stretching and relaxation rather than building core muscles or improving back muscles. I am in a lot of pain and anything more than that isn’t well tolerated, I’ve tried.

His behaviour in both words and mannerisms after I told him I was doing some yoga was disbelief. It set my teeth to grate against each other and my 19-year-old was in the room with me and could feel the stir of my anger. He asked me next how do I feel when I don’t take my pain medicine? I truly felt like this was a trick question. One of the things you learn upon going to a pain management doctor is the absolute way in which you should take your medicine. You don’t divert from the way it is prescribed. You don’t take more and you don’t take less. I was silent while he tapped on the keys of his laptop until he turned to face me expecting an answer. I said: “I imagine I would be in much more pain than I am already, and I would probably get a lot less sleep than I already do.” He nodded and then told me next that I would need aggressive physical therapy because in his opinion, this would make me feel 10x better. Also, he doesn’t think I need the cane. According to the MRI, there is no reason I should be using it. I said very readily that my reason for using it is not only because of my pain shooting down my leg but because I have a balance issue. I teeter when I walk and when I don’t use in my house, I often hit the walls in the hallway and corners of things. He gave me no possible reason for this and just moved on.

At this point, the visit was concluded with the direction to get in touch with the physical therapy and he would see me in a month where he would see how the physical therapy going for me. I managed to escape the office without throwing a fit because believe me, I was very close to an epic meltdown. When I got into the car, I lost it. All I could think of was how in the hell is physical therapy going to suddenly help me now when it didn’t help me 3 years ago? How is this suddenly you’re a-ha moment, when I went through more investigatory injections than I have fingers, two spinal stimulator trials and a sacroiliac joint fusion? I went through 6 weeks of physical therapy, where they could not get me beyond water exercises and the spine doctor declared the sacroiliac joint fusion [SIJF] necessary and now this is the miracle cure, that will have me running, jumping and walking again?

No. I truly believe that this is his end-of-the-rope response to me. He’s exhausted all ideas, and I have noticed in previous visits that he seemed at a loss why nothing he tried worked for me. I get it. In all fairness, I understand how frustrating it would be to try and try with a patient, but keep coming around to the same result. But I also don’t feel that he’s been looking at the big picture. Instead of looking at my entire body, and the entire problem that includes all my diagnoses, he’s insisted on focusing only on the small area of my back. He’s beat this problem to death and because he can’t fix it, I am now a lost cause, and well, physical therapy can’t hurt, right? Wrong. The physical therapy I endured prior to my SIJF was excruciating. The therapist decided on water therapy because her lightest touch brought me to sobbing. While physical therapy costs money and at three times a week for 5 weeks, I know I can’t afford it, I’m positive I couldn’t endure it either. But if I come back and say I haven’t gone I am almost certain that I might have my pain medicine terminated. Talk about a rock and a hard place.

I want doctors to do something radical. I want them to look at the bigger picture and not see me as a part. Though the practice of specialities has brought more focused knowledge of a subject to patients, it’s also brought a disconnection. My rheumatologist, cardiologist, neurologist, gastroenterologist and pain management doctor don’t communicate with one another. Each of them sees me through this keyhole, only seeing a small part of what is wrong. They all prescribe their medications and here I am, still in pain and still not feeling well but managed. It’s become all about management. The management of a life in pain and I’m pretty damned tired of it.

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You’re Not Really Disabled

There’s been a trend in my recent writing topics, that I can only define as WTF. I’m not being very eloquent about it, but there it is. WTF stretches a broad range of experiences that I’ve discussed both in my blog and for National Pain Report. One of my doctors telling me he doesn’t believe I need a cane, based on my MRI, but not offering me an explanation as to why I feel I need it because I’m unsteady on my feet, bumping into walls and my knee giving out on me. But it’s perfectly okay to shame me about using it and offer physical therapy as the Holy Grail of cures after three years of procedures and surgery. There’s also been the well-meaning “I hope you feel better,” that while well-meaning, becomes an irritation after you’ve explained your situation multiple times and are not truly heard. Something I haven’t written about but will be covered soon, that also falls into this, WTF feeling, is when you are made to feel as though you are faking your illness with those very people who are supposed to be taking care of you. I’m talking about the medical professionals in your own doctor office and hospital. Today, I’m discussing the very many ways that people (close to us as well as strangers) are in denial about our disability and aren’t afraid to tell us.

·       You’re not really disabled, you’re just fat: Yes, this happens. I have heard it time and time again and it makes me livid. I’ve never been explicitly told this, but I don’t think it matters. In my case, when I was just beginning this chronic journey and trying to figure out what was wrong, my first place to start was my PCP. Instead of sending me for tests or at least another doctor if they didn’t know what was wrong, I was given diuretics for my swollen fingers and forced to speak to a dietician who told me losing weight would be best for me and I should eat from smaller plates. Yes, she actually said that. My experience is a fraction of what people out there experience. I’ve heard of a woman who did not look obviously disabled, parking in a disability parking spot and when she returned, finding a note on her car saying that she didn’t actually need that spot because “she was just fat,” and she was taking spots from “people who actually needed them.”

·       Your disability doesn’t look like mine: This problem isn’t just among the -abled, it’s pervasive everywhere. The basic idea is that because your disability doesn’t look like mine, then you must not actually be disabled. This can be with anything, and I guess it’s because we are judging the progression of the disease or the severity of it through other people. The thing is, we are all unique creatures. Just because I have fibromyalgia and my neighbor has fibromyalgia, and we’ve both been suffering for seven years but I’m younger than her by ten years and use a mobility aid, doesn’t mean I’m not disabled or I am exaggerating my illness. I feel it is hurtful to make those insinuations about someone because we don’t know their entire medical history, nor is it any of our business. We should be supporting one another, not becoming part of this culture of undermining those who are chronically ill/pain. We have enough people doubting us, we don’t need more.

·       You aren’t disabled unless you are using a mobility aid: Almost contrary to my thoughts above, is the idea that you aren’t disabled unless you are using a walker or cane or wheelchair. I don’t know if this thought comes from the way the disability icon is drawn, with the figure in the wheelchair, but it is something even I had a bit of difficulty working my head around when I began using a cane and received a placard. People do not realize the wealth of issues that can prompt usage of a disability placard or identifying as disabled. A cane doesn’t make you disabled. Your disability makes you disabled. PTSD is invisible and the person can run and jump without issue, but needs the disability placard to get in and out of a facility quickly. There are many illnesses and many who have chronic pain but do not use a mobility aid, who are disabled but you would not see. Disability is not something you can necessarily see and society should understand that.

·       You’re not really disabled; you just don’t want to work: This has got to be one of my favorite misconceptions. While I will concede that there are some out there who would use a fake or exaggerated illness to get out of working, I don’t believe that the majority of us do this. Working compromises so much of our identity and is so important to our ability to survive and just support ourselves, that I believe most people who cannot work, truly can’t work. There is a feeling of guilt when a person comes to the decision that they can no longer work and it affects them psychologically too. I know from my own personal experience that you feel defeated and you feel betrayed by your body. You also feel diminished as a person and as though you are no longer allowed certain things because you don’t have your own money. It is a lot of work recognizing that none of this is your fault and feeling good about yourself again. Disabled people want to work. It’s the accessibility of work that is the issue and the reason so many who have a disability can’t work.

·       You aren’t really disabled if you only use your mobility aid part of the time: There are many who are pretty insistent that because I do not use my cane, 24/7, that I am not truly disabled. My humorous come back for this, because I can be snarky now and then, is, “Why no, my cane is actually a walking staff and I’m really a wizard.” After which I proceed to roll me eyes. Just because I feel safe to navigate my itty-bitty house, without my cane, doesn’t mean I am not still disabled. I cannot navigate outside terrain, from grocery store to parking lots without it because I never know what I might encounter. It could be a crack in the road or just someone who is inconsiderate and pushes their way in front of me because I am slow and I lose my balance. The cane helps me not to fall, it helps when I get tired from walking and begin to hurt. It’s my prerogative to use to help me feel safe in an unfamiliar environment. I think I deserve that. So, yes, I’m still disabled.

There are many more instances, but these were the first to pop into my head. Feel free to message me with your experiences and I will do a follow-up piece to this one. As always, thank you for reading.

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Chronic Illness: Oh, I hope you feel better soon.

We live in a world where being polite is reflective of manners. Someone sneezes, we say “God bless you,” whether we’re Christian or Atheist. It’s not an actual blessing, as Pope Gregory the Great uttered it during bubonic plague epidemic of the sixth century. [https://people.howstuffworks.com/sneezing.htm] (Just figured I’d throw some trivia in there for you. In case you’re ever on Jeopardy.) It’s just considered good manners and nobody thinks much of it. When you are sick, people often tell you to “Get well soon,” or “I hope you feel better.” Sometimes people mean it sincerely, and sometimes it’s just something people say because they are trying to be polite. Regardless, we don’t usually take offense to it and we say “Thanks,” and go on about our day. However, there are some of us who, while we may not take offense to it, are sick of being told “I hope you get better soon.” It may sound strange to you that someone would get upset over a seemingly benign offering to get better, but when you live with chronic illness or pain and aren’t going to get better, it can become aggravating to hear. Even more-so, is when you’ve addressed this, and your friends or family refuse to accept that “getting better” is not part of your story.

exploding-head

It is difficult for everyone to accept they have a chronic condition, especially at first. Chronic means that there is no cure, and that you will have to live with this condition until you die. It can be very daunting even for the most optimistic of individuals, but you eventually learn to live in this “new normal,” and that doesn’t mean you’ve given up hope, it just means there is a level of acceptance that healthy people are unaccustomed to. What I mean by that is, healthy individuals typically only have dealt with things like a cold or sprained ankle, or maybe a broken wrist where they had a cast for awhile or broken leg where they hopped around with crutches. Some, maybe deal with a chronic illness that is controlled by medicine and if they are careful, that is all it takes to keep them healthy. While still chronic, it is maintained so they feel good a lot of the time. Those like me, with chronic illness that is not controlled by medicine and only manages some symptoms, not necessarily all the time, live in another world.

Here are five examples of why telling someone like me, who has chronic illness, “Hope you feel better soon,” (and other things) can be irritating, and in some instances, makes us feel like our head is about to explode and what you might offer instead:

SheldonBoom

  • It’s been five years since I “got sick.” Either I have the longest flu in history or I’m not getting better.
  • We are only co-workers, but I’ve told you I’m chronically ill and you still pat me on the back and tell me “I hope you get better soon.” It’s okay if you don’t know what to say. I’d prefer “Is there anything I can do,” than anything else.
  • I’ve told you before I have a chronic illness. Somedays are worse than others, it’s just the cards I’ve been dealt. You don’t have to say anything at all. You could offer me a hug. Sometimes that can make all the difference.
  • Don’t lay hands on me and start praying over me. Don’t tell me Jesus has a reason and I’ll understand his purpose. Not everyone is religious and if Jesus has a reason, I wish he would have chosen to show it a different way.
  • I know you mean well when you say, “I hope you get better soon,” but it often leads to “How are you feeling today?” The latter is almost worse than the first because, I feel like I’m disappointing you when I say I’m no different than I am every day. And if I am having a good day, you think all the rest of my days should be good and it just doesn’t work that way. Ask me instead: “Is this a good day or a bad day.” If it’s good, be happy with me. If it’s bad, just let me know you are there.

Hellloooo!

Hello again, blogging-world. Miss me? I missed you. But I needed to take some time off for self-care. It’s been frustrating, to say the least. I think we can all agree, that when you suffer with more than one chronic illness, things can get a little hairy from time to time. Your body lets you know, in no uncertain terms, that you’re it’s bitch. (I really tried to phrase that more eloquently, but let’s face it, there’s nothing eloquent about this situation.)

If you’ve been keeping up with my blog, you know that I’m quite overwhelmed with several different things going on. If this is your first time here, I battle R.A., fibromyalgia, ankylosing spondylitis, IBS-d (but I think that is shifting to a mixed form), sacroiliac joint dysfunction, seizures, degenerative disc disease, psoriatic arthritis and migraine. Everyday is different. Somedays I actually feel what passes for good, in my world. In a non-chronically-ill-person, that would translate to something less than good. Crappy, in fact. I deal with it all as it comes, trying to make the best of the days I feel good and where I am not suffocating from pain or debilitated by symptoms.

These last two weeks have been an extended affair of miserable, but I am feeling as though I am finally bridging over the worst part and may be coming out the other side. When I am feeling my worst, I practice a lot of self-care, which for me includes: hot baths with Epsom salt, listening to mixes on Spotify, devouring Twitter and Instagram, taking a lot of pictures of my adorable cat and dog and spending a lot of cuddle time with the Mister. Unfortunately, the Mister was gone this weekend for his one-a-month Air Force gig, so I had to cuddle with the cat and dog, but we made up for it when he got home last night and plan to do more today, after his work.

In my blog, I focus a lot on issues I see in this chronically-ill-world. I also write about the discrimination I see in the disability world. I share my experiences in both those areas, as well as mental health. Some of my chronic conditions not listed above, have to do with mental health, as I am bipolar, struggle with OCD and PTSD and severe anxiety. As many people can relate, when my chronic illness is flaring, I tend to feel a spike in my mental health issues. Meaning, my anxiety ramps up, my OCD goes a little bonkers and I may get depressed or even slightly, manic. It’s all very interconnected. Today, my writing is more, catch-up. Less focusing on specific things, but rather this monster of chronic illness as a whole. It really is like a vast eco-system, and when something is off, or when something is out of control and flaring, it bounces off and affects the other things. These last two weeks, I think I might have gotten a glimpse of how our actual eco-system is feeling in the midst of all this climate change. It’s been brutal.

I had started a chat on Twitter (which you can follow me @lovekarmafood) on whether or not to take the chance with another gastroenterologist. Something else I am sure you understand, is when you know something is wrong with your body and you don’t feel the doctor is understanding or listening, but being afraid to find a new doctor and having to start from scratch again with tests and meds because, frankly, it’s exhausting. Not only is it physically exhausting having to go to the appointments, but it’s mentally and emotionally exhausting. I am pretty close to starting that search for a new doctor, especially after this week. It was probably the worst IBS flare of my life, with stomach pain that was worse than labor pain and was reminiscent of Aliens for me. But I didn’t go to the hospital. I’ve been there before for an IBS flare and it was not worth the visit. Once they know you have something chronic, they do their best to make you comfortable, but pretty much tell you to see your doctor. And in this day and age with the opioid hysteria, I’m not sure what “comfortable” would mean. Sometimes I feel that as an advocate for chronic illness/pain, and as a writer, chronicling her journey through this illness and pain, it should be easier for me to vocalize with doctors what I am feeling and what I am going through, but I’ve learned something. Doctors (not all) have a way of making you feel that they know best. Some come off as arrogant, while others come off more like a parent, but either way makes you feel like you don’t even know your own body. It’s terrible. And partly the reason for my reluctance in finding a new doctor. But I would really like to feel better, long term, with this IBS.

So that is a little about what’s been going on in my life. Stay tuned for the next time where I’ll be talking about our non-spoonie friends and their well-meaning, but irritating: “I hope you feel better soon,” followed by, “You’re not really disabled,” for my friends (like me) with disabilities.

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.

Grief of Chronic Illness/Pain

Yesterday, I cried.
It was a hard week for me, on top of which, my partner was gone for his military duty. It’s not anything unusual, I’ve been without him for longer stretches of time. In fact, he’ll be gone for a week soon and then in the summer, three weeks. But, this small stretch of time he was gone, was profoundly difficult for me.

I’m extremely lucky in that my children are, for all intents and purposes, adults. They range in age from 24 to 18 (all girls) and my youngest, will in fact, be graduating this spring. However, we’re still waiting on the younger two, to get their driver’s license. There really hasn’t been an urgent need for them to get their license with two older siblings and with only one of us working, we’ve been trying to delay the spike in our insurance again.

I do have help from my older two daughters. I often need them to run errands or pick up one of their sisters, especially when I am not feeling well. However, with the three older ones working shift-work, there are times when it falls on me to shuttle someone to work or school or bring them home. Luckily, they do not work or go to school far however, on those days when I am feeling especially bad, there is no other choice but to press on. My function as Mom has not ceased because I have chronic illness and pain; my function as Mom doesn’t get easier on days I don’t feel well. Sisters have fights; there’s drama on occasion and I have to be there regardless if I am sick and regardless if my husband is not there. Sometimes, it’s overwhelming. Sometimes, I break.

When he came home yesterday, I had a meltdown over something stupid. I realized everyone, including him, was looking at me like I lost my mind. He’d been gone and it hadn’t been a fun time for him either, and instead of expressing happiness that he was home, I got irrationally angry over something stupid. When we retreated into the bedroom to talk the anger dissolved into tears with me nearly sobbing. I was flooded with emotion and frustration over what chronic illness has robbed me of; continues to rob me of. Four years past from when this all began and I still continue to mourn my past self.

I write about chronic illness. I write about mental health. These are things I am intimately familiar with. I often read about how chronic illness and pain can cause depression and anxiety but in the context of a person who doesn’t already have this. I am bipolar with anxiety and OCD and I can tell you, that my chronic illness and pain have a profound effect on my mental health. The only analogy I can conjure is that of torture. Chronic illness and pain are a continuous assault to the body and mind. There is no respite from it, and if there is that brief space where you can breathe, it is short-lived, as the recurrence of symptoms and pain seizes your body violently and steals your breath. Now, imagine being tortured and having to continue with your day- continue with all the responsibilities entailed in that day- with a smile. Most people can’t understand what that must be like. It was certainly the furthest thing from my mind four years ago. Four years ago, pain, was something that could be fixed.

I try to live the best life I can. Most days I wake up with a sense of purpose and a positive frame of mind. I have to. I have a family who depends on me and while they may not depend on a paycheck, they depend on all sorts of things from me. Most of all, they depend on me being there as best friend/wife, mother, daughter and friend. These are the things I think about when I’m on that downward slide. But there are times when I need to cry and it’s okay. It’s letting a little of that ‘emotional steam’ out of the pot so I don’t explode like I did yesterday. We often hear about being positive and having motivation but this life we’ve been given is not an easy one and we aren’t un-feeling things. We need to cry and flail and get out our frustration or we’ll explode and become very resentful of our situation.

Yesterday, I cried, but today is another day. I respect my tears and treat them as a stepping stone; something that is needed for me to continue to thrive in order to be able to deal with this life I’ve been given. So, let yourself cry.

Please stay tuned for more blogs this month as I devote March to Chronic Illness/Autoimmune Disease Awareness.
Thank you for reading and supporting my blog.

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The Problem With Comorbities

It all began with one chronic illness- or did it?

At times, I wonder how this all began for me. I was never the poster child for health, but neither was I on the sidelines of life as much as I am now. I think if not all of us with multiple chronic conditions, then surely a great many of us, ask themselves the ever-looming question of: ‘How did this all start? What did I do?’ I think about this often and as I have discussed in my post On Becoming Sherlock, it feels like I am always trying to connect the dots; trying to find that Holy Grail of answers to why I am sick.

Recently, I have been more frustrated with my comorbidities than usual. It’s as though I have reached a tipping point and I am not sure when it happened or if it is more related to the symptoms of each chronic issue, rather than the issue itself. In the beginning, it was pretty easy. I grew up with asthma and allergies, which often led to chronic sinus and bronchitis. But I was a kid and I suppose, while it sucked, I assumed I’d grow out of it. Amusingly enough, I grew out of a lot of things like my allergy to chocolate and cats and dogs, but my asthma stayed and when I get sick it nearly always turns into bronchitis. As an adult, I traded more child-hood illnesses for more grown-up ones and I wish I could swap.

At first, it was manageable and there was the illusion that with each surgery, I might be cured. Bulging disc became laminectomy, which later on evolved to spinal fusion. Avascular necrosis in my left hip was treated with core decompression, which eventually turned into total hip replacement. Sacroiliac Joint Fusion became SIJD Fusion. I’ve had surgeries for carpal and cubital tunnel, surgery for tennis elbow and surgery for torn meniscus. Still not feeling well, I fought to find that magic diagnosis, the reason to why I needed so many surgeries before 40. That is when the gates were thrown open and a flood of answers came forth.

Degenerative Disc Disease, Fibromyalgia, Rheumatoid Arthritis, Psoriatic Arthritis, and Chronic Pain from failed surgeries. Let’s not forget that my Asthma did not go away, I also developed Chronic Migraine and in the mental health department I was diagnosed as Bipolar II when I was 22, but I also developed OCD, Anxiety and PTSD (which is more PTS these days as symptoms are generally controlled.) My point to all this, is when I am unfortunate enough to have to go the hospital, or have to venture out to a new doctor and I get that dreaded question of, “Do you have any health issues you take medication for regularly?” I freak out. I freak out because scene one is that I whip out my handy-dandy cheat-sheet, a piece of note-book paper with everything listed and hand it over, where I get the “look” from the nurse. You know that look. Or scene two, try to remember everything off the top of my head, which is probably not the best idea given my Swiss-cheese-of-a-brain, rattle off a handle full of stuff and sounding like I am trying-out for a High School play (a part I am not going to get) and still get the “look.” As though I am making stuff up, because, you know, everyone wants to have a ridiculous number of things wrong with them at a near 45 yrs. old.

However, after this deluge of diagnoses, I am no where near a cure and I feel the weight of these comorbities heavy, on my shoulders. I’m pretty sure you can relate, so I’m sharing with you my:

Top 6 Problems with Comorbities

• The Roulette Wheel: Constantly feeling like my life is the personification of a roulette wheel and every morning I wake up it’s the big spin of the wheel of symptoms to see which ones are going to act up.
• Symptom Management: The act of simply juggling my symptoms and trying to manage my pain is exhausting. I (we) are the center of our own universe and all of us have responsibilities outside our health. That never stops.
• Treatment (natural or medical): Another problem encountered when you treat one disease and it wreaks havoc on the other(s). You feel like you are constantly chasing your tail and feel as though you are destined never going to be able to get ahead of this.
• Ripple Effect: A flare here means a flare there, and there, and there, and there…ugh. It’s like a domino effect of your illnesses that make your head spin.
• New vs Old: Not knowing if a new symptom is just another symptom of an already established issue or if it is something new entirely, AND THEN, which doctor to call.

I hope this made you laugh, and even if it didn’t, I hope you know you are not alone. We’re all in this crazy, chronic life together and whether near or far, we’re connected because of it. As always, thank you for reading.

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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.