Opting out still feels left out

I think it should be fair to say that opting out of an event doesn’t mean that you won’t feel left out for not going. Sometimes, sure, you may really have not wanted to care and won’t care after, but other times there are extenuating circumstances that drive the decision. In this case it is my health that kept me from attending a friend’s birthday party, and even though I chose not to go it still leaves that bitter taste of being left out of the fun. Some may argue that it was my fault that I didn’t go when I could have but I would argue that I couldn’t have gone. Midway through the week I had a mystery celiac reaction (the kitchen had been particularly messy so the source is unknown), and spent Wednesday crippled in pain on the couch- unable to even walk to my bedroom. Now although the pain would be better by Saturday, the recovery wouldn’t be so I told my friend whose birthday it was that I wouldn’t be able to go on Thursday when I was starting to be able to function again.

I think one of the things that I wish was more diversely understood was the impact that making health related decisions has emotionally on an individual with chronic pain. When we say we can’t go, we don’t take it lightly. Some days facing the pain is not as bad as others, you wouldn’t know that there was anything wrong. Others, the idea doing simple tasks around the house can be daunting. For the most part I like to be realistic with my friends, because I honestly cannot always function and will often have to cancel last minute or leave early unexpectedly. Where I can I do like to give as much notice as possible, it will disappoint them that they won’t see me but I know they understand. Unfortunately, knowing they understand doesn’t make the guilt for not being able to control an illness go away. It doesn’t take away that twinge of unfairness when you can’t participate in things like everyone else. It doesn’t stop you from feeling like one day everyone will just get fed up with you and your unreliability.

I think that these emotions get underrated when we talk about the impact that chronic conditions can have on a person. At this point in an article I would give some insight or advice to help others like me. I’m sorry to say that I don’t know how to handle this one, but if you do, I’d love to hear it. Feeling like a burdensome disappointment is not anything I would wish on anyone, but it is a reality many of us face. If you ever meet someone who faces chronic pain syndromes or any debilitating health ailment, be compassionate and understanding– it is harder to live with than it looks.

Being a good person vs being your best

Something I need to write about: the difference between being a good person and being the best person you can be.

These are two concepts that are very different but are so often mistaken for one another. Like two friends who could be sort of passable as sisters, but are always asked if they are sisters. Very different, but often confused. I would like to start by explaining what both concepts mean, then get into why they are swapped and which one is the more realistic goal.

Let’s start with being a good person. I personally feel that being a good person is a very unreasonable expectation of people. Hear me out, I don’t mean to say that it is OK to not be good or attempt to be good. Being a good person is a turn of phrase, being the best person you can is a statement of an action. In the turn of phrase “to be a good person” it implies a passive state of being, to be a “good person”. I honestly don’t being a ” good person ” exists. To be good is a very ambiguous term, but in many cases there is the implication of perfection or, at the very least, a lack of what one may consider as “bad”. It is a reflection of a set of values or morals that is somehow thought to be appropriate as a general way of existing. The issue with this idea is that it is impossible to make completely good decisions, it is impossible to act in a good way all the time and it is impossible to exist in a permanent state of goodness…unless you are god or an angel or something of the like. Let’s be realistic. A human is flawed, the world we live in is flawed and all the people we in counter are flawed. If this is the base state of our existence it is impossible that we are always within the bounds of the ambiguous moral values that surround the word “good”, especially in a passive context that the turn of phrase suggests.

In contrast, it is entirely possible to be the best person you can be. In this case it is the active role, you are actively participating to do the most you can do in order to achieve your highest moral compass possible within the context of your unique life. Being the best you can be allows you to make mistakes, it recognizes that there are times where no one is good or bad in a situation. It allows you the freedom to be flawed and not hold yourself to unreachable standards.

It is important to have a moral compass, make decisions that will have the best over all outcome for everyone and be the best you can be, but there is no need to let yourself feel bad for not fitting that idea of a ” good person” at every turn.

I attest to the fact that I am not a good person, but that I do my most to be the best person I can be. I am not always patient, I am not always virtuous, I am not always calm but I try my hardest to be. I am not always in the right, but neither is everyone else so I recognize those facts as best as I can. From my experience, it is those good people who forget how to be humble and hold that bar that they will never reach over the heads of everyone else around them.

So why settle with being good when you can be your best?

Reality check

I am uncertain as to what is reasonable to expect of myself anymore. For so long I would try my hardest and do everything I could, but that invisible line tying me to the reality of my physical condition would always snap me back down on my ass again when I least expected it.

In the last 7 years that I have been working I have, due to my health, managed to earn less than 4 grand a year. I have somehow survived in poverty well enough to get a degree but it has not been an easy situation. I’ve got that university degree, but what the little piece of paper doesn’t say is how I missed two thirds of my classes or just how many re-take exams I’ve written. It doesn’t tell you that for those classes I attended I barely understood the lecture through blinding aura, headache pain or fibro fog. I’ve had to leave each of the jobs I’ve had for medical reasons, except my first job as a lifeguard at 16 (I moved way beyond commutable distance and there was no pool in my area anymore). I quit at the stable because of my allergies, I couldn’t breathe when we switched to ceder shavings for the stalls in the fall. I was already technically allergic to the horses and hay, the cedar nearly killed me. I had to quit my job as a supervisor at a fabric store because of my migraines and fibro, I just couldn’t keep it up. I couldn’t complete my contract hours as a tutor at our local elementary school board because of migraines. I had to quit teaching dance at a different elementary school because of my fibro more than my migraines. Each time I started the job excited and certain it would work out because I willed it to. Each time I was hit with reality.

I want to apply to a local gluten free bakery that is an easy walk from my house and an even easier bus, but I don’t want to feel the sting of failure again because if I am realistic with myself I don’t know how I would manage it. I could go in saying I can, believing it too, but how many times have I tried that with jobs, school or extra curricular activities? I’ve had to stop fencing. I’ve had to stop sewing for the most part. I’ve barely been able to continue leather working once a week.

What is worse is that my pain tolerance is gone. I was on Lyrica for about six months… It helped the pain, though it gave me confusion like crazy. The problem with it having helped the pain is that I now face the fact that I can no longer tolerate pain like I used to. I built up a normalcy over my lifetime of gradually worsening pain and now that tolerance is gone. It doesn’t hurt any more than it used to, but I can’t push through it like I could, it isn’t just the norm of my body anymore. The few months of relief was not worth it…. And with the knowledge that even when I could tolerate it I fell on my ass… How am I going to manage it now?

I still get aura that physically debilitate me for hours that happen without warning… I still get migraine pain so bad I am stopped in my tracks with no warning and little relief. I’ve had to contest the decision for my application for disability support and have my neurologist write a letter to support my case (because as he put it “it is very hard to get on for headaches” even if they aren’t the main reason for the application). I’ve been waiting 6 months since my doctor sent in her share of the application… I fear I will have to fight them again to be treated justly… I fear I will be left useless… Useless to work and so useless that I can not even be supported by that social assistance that is meant to get Canadians whose health is unwielding back on their feet…

I don’t feel like I am lesser for being where I am… I don’t feel like I am worthless… I just don’t actually know what is reasonable anymore or how to figure that out… It is hard. Very very hard.

Growing pains (language nsfw)

Do you ever have times where you just want to flip the bird and yell to the world to fuck off and leave you alone? Well I certainly do. I am no stranger to bullshit, and I have lived through my fair share of ups and downs where the downs last much longer and drop much lower than the ups. Well, lately I have been having trouble with a roommate and his behavior with me (and only me because he was being fine and dandy with everyone else). I have honestly reached the point where I just don’t give a crap anymore about what people think. There have been so many stupid misunderstandings, miscommunications and such between several of my friends that I am ready to just wash my hands and say with a straight face: “You want my story? Its here anytime you ask. You want to make assumptions and not give a crap about what I have to say? Go for it.” I have done everything in my power to keep my personal integrity in tact, and in every way I know where and when I am and am not at fault in everything. I have done my best, and if that doesn’t matter then why should I care? I don’t have the energy to give to care.

I’ve so often given the advice that if someone is not treating you as a friend should be, they do not deserve to have you as a friend. I have not once taken my own advice before now. I was always too worried that I would fuck up, that I wasn’t worth and that I needed to make sure I always stayed worthy of being someone’s friend. It was an unhealthy way to look at it, but not matter what I tried I could never apply my advice to myself.

It seems that all it took for me to grow out of it was to have done everything I could to preserve my integrity, not be the one causing problems and actually nearly lose a dear friend because of bullshit. Not a pretty situation, but one that has most certainly helped me grow and learn. I am not sure how it will all turn out at this point, but I know for a fact that it is not on me this time. So I am not worrying.

Honestly, if I can give any advice: don’t let misunderstanding or miscommunication stress you out. Be hurt when it hurts you. Be upset when the actions people take are unreasonable. Just understand that miscommunication is going to happen no matter what with ever person you ever meet. It will be to varying degrees and the consequences will always differ, but expect it and don’t sweat it when it does happen. Address it, fix what can be fixed and move on.

Relief

I have never felt such a moment of relief and peace. So as anyone who follows me knows, I have a slew of health problems that have taken absolutely forever to begin to address and have often led to my ingestion of medication that more often than not gave terrible side effects. It has been a heart wrenching, emotionally taxing time for me and in the last year my fiancé too. Well, today for the irat time in a very long time I felt something incredible. Something indescribable: hope.

I had a trip to the ER last Monday with horrible pain in my lower abdomen, essentially where my ovary sits. They did every test they could without laprascopically taking a look and in the end said for me to se a gyno as I may have endometriosis. This was a hue shock as my aunt had it before having a hysterectomy in her 50s, and as a teen I had poor luck with my cycle (I bled way too much and too often). This led my other aunt to help me find a NaPro doctor (a doctor trained in the Creighton Model fertility tracking and natural progesterone therapy treatments). We found one and I made the call. Turns out it is a male who does it, but I made an appointment with a female he worked with. There was a bit of a mix up as she doesn’t do NaPro, but I decided to try it out anyway. I currently see an NP through my university clinic and it has been a slow and arduous journey, having a GP would be much faster.

Turns out she was a Dr forte military and did two years of residency or internal medicine (so treating all the people who had things wrong) and when she left the military her husband was posted to a town near Vancouver where she held a practice… A practice where he followed her patients and treated her patients for everything! They go to the ER, she gets called in, they get hospitalized, she follows them at the hospital, they have a baby, she delivers it! The only thing she didn’t do herself was psychiatry, but she worked very closely with the psychiatrists and has a good grip on emotional problems a well as physical. Now if that wasn’t good enough, she has spent the last four years learning about gluten and the effects of celiac disease and gluten intolerance, which she in turn teaches her patients. I having celiac find this a breath of fresh air like none other. But wait! There’s more! She doesn’t believe in prescribing medication unless she knows for a fact that it will have many more benefits than drawbacks, and teaches the Billings method of fertility tracking to work with her female clients for natural methods of birth control so that they better understand their cycle. I think the best part is that she takes the time the patient needs because she is time dyslexic (like me) so she doesn’t shoo away her clangs when the buzzer goes.

I was the second to last patient, the last being an infant so I let her deal with them so we would have extra time to talk. Not only dis she take me seriously, she actually wasn’t at all surprise by the slew of health crap I have accumulated because she has familiarized herself with the relationship between them all already! She ordered blood work and chart requisitions from my NP and specialists today and next time we will have something to work with.

I cried when she left the room to see to the infant and I was overwhelmed with a need to thank god because there is honestly no way that this could have worked out like it has otherwise. I’m already a pile of statistical anomalies, this is one that fit so absolutely perfectly that it could not have been an act of chance. It is honestly less likely than me winning the lottery several times.

I feel hope. For the first time it doesn’t feel like I am stuck in darkness with no way out. The pain doesn’t overwhelm me because I know I will get it resolved, because if anyone can resolve my problems it is her.

I never thought I would feel this type of conversion, and you can call me crazy all you’d like, this is the one time I wish everyone could be in my shoes. It just feels so good after so much bad.

Bad memory and fibro fog

So I’ve been having a fairly foggy day today as I have over exerted myself a bit more than usual over the weekend. I noticed a pattern as I observed the fact that my fibro fog has a direct correlation to my pain. When I am in pain, my mind becomes foggier and foggier. This fog is very different from the sensations one might get from being distracted by their pain. Unfortunately, this is one of those things where you won’t really grasp my meaning if you yourself down experience it.

So what? I get foggier when I’m in pain. Well, studies have been focusing more and more on the idea of body memory. It is a theory that much of your working memory is actually stored in your body with only a part of them being stored in your brain. If you ask any one who plays an instrument I am certain they could vouch for some kind of body memory. I personally play the flute, and I don’t actually think about what I am doing, my body does it automatically.

Now the next piece of my theory is based on recent findings that indicate a commonality between fibro sufferers: we all have an excess of a specific nerve type that had previously been understood to regulate blood flow at an autonomic level. I personally have not had a biopsy of my hand to see if I have elevated nerve endings, but the theory seems sound.

Put two and two together: what do you get when you have too many nerve endings sending funny signals and a body whose working memory is mostly found in and around those nerves? You would likely get distortions in your short term memory as your body failed to store the information of the day, which in essence describes fibro fog. I do of course need to make a distinction with my use of the term short term memory. In this instance I am using it to describe anything from immediate to a few weeks of information that the body would normally store and remember. If your body is forgetting things as they are happening or isn’t given the chance to even attempt to remember, then it comes as no surprise that you will feel foggy and confused and not remember what you ate for breakfast without forcing yourself to repeat the word “eggs” ten or more times to yourself.

This little bit of insight wont fix your fog, but maybe it will find its way to the right doctor who can really do something about it and help us fuzzybrained fibromites out.

An end to my migraines, I didn’t expect

I never thought I would say this, but I have happily and enthusiastically jumped onto the anti-hormonal contraception bandwagon. Why you ask? Because I have recently found it to be the source of my chronic migraines.

I started hormonal birth control at the age of sixteen for the regulation of my all too irregular menstrual cycle. At the worst time I experienced a cycle with 8days between bleeding. I was anemic, and my Doctor decided that the solution was The Pill. Over the years following I started getting horrible migraines, and at the age of 20 I was diagnosed with aura and switched from estrogen to progesterone. At the time I had went from a migraine a year to migraines every day. I’ve had migraines everyday since, that is to say until I had my IUD removed. The morning it was removed my head had been killing me, that is up until half an hour after it was removed. I have not had a migraine since. That is not to say that I don’t expect to eventually have a migraine, but for now they are significantly improved.

I have heard horror stories before about the side effects of hormonal birth control from friends and family but now that I have experienced the sighing breath of relief from my headaches, I won’t ever support the use of those hormonal therapies. Yes, they help some people. That doesn’t mean I have to like them or agree with their use anymore.

Chronic fatigue and exercise

Sometimes it feels like I am struggling in an endless battle.

I’ve been noticing some trends in myself lately with regards to my energy, pain and overall well being. For years I pushed myself through my chronic fatigue and never let myself fully relax. I got tired and cranky. I was in extreme amounts of pain and all the while I thought that was how everyone else felt- at the time I didn’t know any better. I thought that my fatigue was just being exhausted, but that everyone else felt pain all the time all over their bodies. I thought everyone saw fuzzy patches in their field of vision and got headaches after. I thought everyone had stomach problems.

Then I went through a long and strenuous diagnostic process and started to learn just how much of what I experienced was in fact *not* experienced by everyone else on a daily basis. It was terrifying. It didn’t stop me from continuing to push myself the way I had been. It didn’t change the fact that I felt that I *had* to operate like everyone else does whether I’ve got a different or harder time of it or not. I pushed and pushed and pushed. It got harder and harder and harder to keep up that pace. Then I introduced medication into the mix and in all honesty it made it worse. I tried everything to ignore the new symptoms that popped out as my body began to adjust to the chemicals now invading my system. I wasn’t any less fatigued…. And sometimes I was more.

I tried so hard to keep up the act of pretending I was fine, until it fell over the edge last October-november when I moved. There was so much to do, in the middle of a semester that I couldn’t remember a month of because of a bad reaction to medication where I was teaching dance twice a week… So I grew more overwhelmed than ever…

It was then that I had to make the decision to take the next semester off. I teach dance at a private school, so my Christmas holidays were four weeks long. I managed to do tons around the house, at my own pace, I house sat for my mom, and for the most part I was able to rest and actually start to sleep again… I felt it was time to gradually increase my activity levels again.

Dance started up again last week and in all honesty I regret my choice to keep teaching instead of truly taking the semester off for my health. I am in terrible amounts of pain, I am extremely fatigued to the point of losing strength and I feel like I am constantly moving through thick molasses.

My unofficial adopted aunt shared thus article with me recently and in all honesty it has shed some light on part of why I feel so crummy from my chronic fatigue.

http://theargusreport.com/us-neuroscientist-says-exercise-is-a-noxious-stimulus-that-worsens-symptoms-of-mecfs/

It is a simple article, but it debunks much of the media’s recent wave of thought. I can tell you straight: when you have fatigue, increasing your activity level makes it worse. Although exercise is important, it is not what we need to cure or remedy fatigue. I’m not sure what we can use to remedy it truthfully, but I’m searching….

Oh and so that you know, I was 150lbs (of muscle with healthy fat content for a woman) from the age of 15 up until this past summer where I started a new medication that caused me to gain weight rapidly and I’m at 190lbs now. I am slightly overweight for my height and build but not by much. I eat a healthy gluten free diet, I don’t sit on my butt watching TV all day, if I’m at home I do things around the house, do art or crafting, clean or study and research. So when I say I’m afraid to do more cardio because it physically hurts me, its not because of my weight or because I’m lazy. It is because it actually causes pain in every region of my body to varying degrees–and I’m not talking about sore muscles either. I’m talking about mixed up signals in my pain receptors for what ever reason.

Saving face

Why is it that we stand behind the facade of well being, saving face at every turn? In many ways I agree that one must save face but it seems like we have lost the reason to do so. In many cultures the concept of saving face had left a permanent mark historically, setting a need and a reason that is culturally relevant. In our so called modern society these meanings, needs, and reasons have been muddled and confused leaving behind the dilapidated corpse of reasonable conduct. As if the clash of cultures melting into the mosaic of north america took pieces from each other without explanation and attempted to snuff out others.

I do not know of any time in hiour current time where it was unacceptable to be ill and speak of it as a natural fact of life. Yes, taboo and gossip followed such discourse, as it follows any topic that people do not fully understand. Saving face was rarely used in this context. Saving face was used in the context of masking emotional reactions for the sake of keeping interaction between people civil and cool. It was created to show self control even in the most outraging circumstances. It was taught with the intent of learning how to calmly address situations that would otherwise cause great emotional reactions. Usually it was used most to keep yourself from doing something stupid.

Somehow illness and physical ailment has been bundled up with this, leaving thousands of individuals suffering in secret silence with few attempts by those around them to understand and address the situation properly, gently. Instead of promoting positive thoughts our society actually trains us to be shameful of our inability to be healthy, as if it something that we caused ourselves– making ourselves look as stupid as if we were a 40 something year old throwing a tantrum over a coworker not sharing their chocolate chip cookies in front of the whole office and the big bosses, when that coworker had only brought one cookie to work that day.

Employers look at those with chronic health problems, or those who have gone through a traumatic time with serious medical conditions like they are less, even if that medical condition is under control. Instead of looking at the qualifications they see what they do not understand and turn away in disgust.

Bodies are seen as dough to be molded to our desires, controllable to every degree. Fad diets and thin models recounting their master weight loss routines. Healthy food and exercise for all, and if you don’t perform to these standards you are sub par.

I understand when you need to save face about your emotional state, but your health is the priority. Our bodies can be modeled to fit our desires, but more often than not we hit unexpected speed bumps that truly hinder that process. People should see that these speeds bumps happen, that no one is truly healthy and accept that they should not have to save face for their body. You can learn to control your emotions and keep from doing stupid things. Chronic  illness does not make you stupid, does not make you less and should not be hidden under the carpet like your dirty secret.

People need to learn that it is ok to talk about your health whether it is good or bad, and they mist equally learn to listen. It is those in good health that should save face when confronted with people who experience chronic illness, because it is their harsh words and lack of empathy that truly makes the fool of them.

-Penelope

An encroaching fog…

I feel like I was originally a bright picturesque rainbow scene, the wind blowing through a misty day just enough to create prisms everywhere, shedding amazing hues on everything the light could touch. I was a landscape of rolling hills, seas, desserts, and frozen paradise. I was the trees and the sky, the earth and the sun above. I had a vast driving fire burning fiercely and brightly.  And I knew what it looked like inside and out. Then life slowly took away my wind and the light mist turned to fog. Pieces of my landscape lost their colour and turned grey and dull. Yet, I remembered what others had seen in this picturesque scape so I let it seem like the grey didn’t exist. I let it seem like my light had not dimmed… Over time, piece after piece fell to the fog and I was left in the middle, a tiny dim flickering flame. No light left to pretend that the grey had not taken hold. No where to turn to pretend there was no fog. I feel like it consumes me. I know what it used to feel like to be driven and passionate, to want and desire to create and indulge in my imagination. The meadows in my mind are not peaceful but poisoned. My heart needs to heal, but I don’t know how. I can’t drive away the fog…