Health-related quality of life regarding sleep and fibromyalgia

Health-related quality of life regarding sleep and fibromyalgia "The study concluded that among the FM population as a whole sleep difficulties were associated with decrements in mental and physical health-related quality of life. Therefore these results suggested there should be greater emphasis on the treatment of these issues." 

Sleep and Fibromyalgia don't really seem to get along but it is true it can be ignored by doctors. When I was younger I was often told chronic insomnia cannot be treated. It reminds me a lot of what they think about chronic pain in fact... that seems to be unable to be handled either. It seems they are only willing to deal with temporary insomnia and pain. Unfortunately there have been a few studies to show with FM even those with no other sleeping disorders... they are not getting quality sleep, whether they get 8 hours or 10 hours. Waking up feeling tired even though you have technically gotten your 8 hours is not exactly functional sleep. However, when you begin to add in delayed onset insomnia, frequently waking at night... then you have decreased that 8 hours substantially into say 4 hours of poor quality sleep. Some people with FM may also have sleep apnea or restless leg syndrome. So sleep issues have to be addressed in some way so that sleep quality and quantity can be improved as much as possible... which then does improve other symptoms. 


In my specific case I have delayed onset insomnia and frequent wakings. This would be one of my earliest symptoms to FM and so that has been since I was a kid. In other words I do not remember a time when I had solid sleep, if I even got it. I tried supplements and sleep hygiene. My room is dark and cool with no distracts. I do all the things you should to get a good sleep. The fact I just never really do was just a fact of life and since doctors never did anything about it I just dealt with it. However I did start getting hypnotic jerks and sleep paralysis in my twenties. And these became more frequent once the migraines did... because you see chronic migraines made it even more impossible to fall asleep at night. Or stay asleep. So I would get this bouts of sleep paralysis over and over in a night, through a week when the migraines were bad if my sleep was even worse. And lots of hypnotic jerks that would jerk me awake just as I began to fall asleep, in almost any damn muscle group. And then violent migraines in the morning or the middle of the night from lack of sleep. Lack of sleep is a migraine trigger. Migraines cause more problems sleeping... vicious cycle.

My doctor at the time said I was sleep deprived. Literally always sleep deprived. And some indications of that was the repeated sleep paralysis and hypnotic jerks. Another indication the violent morning and midnight migraines I was getting. I agreed. Not like I had been getting Good sleep before and the migraines made that worse. I was quite aware I got very little sleep a night and of that it was very poor quality sleep. She put me on a sleeping pill called zopiclone. Which in fact does not knock me out at night or through the night, but it does get me to sleep faster and I wake up less and get back to sleep faster. And after a few months on a double dose of that, which does work very well, I stopped getting regular morning migraines triggered... instead I get sort of a gap before the migraine is triggered. I stopped getting such frequent sleep paralysis episodes, just happen when I get really acute long lasting migraines that cause serious sleep disruptions and I still have to get up early. And the hypnotic jerks are also quite rare now. So on one sleeping pill a night I get about 5 hours of decent sleep a night... but if I have an acute migraine of a pain level that is on the upper ends of the pain scale the sleeping pill is not effective, but then I don't think sleeping pills really are effective for such levels of pain. So on such nights I have a great deal of trouble sleeping, if I do, and this can screw up my sleep cycle.

#Invisble #Illness Part Two... The illness defined and medical stigma born

 Later when it is illness is 'defined' there is a sense of relief to some extent because finally you have this label. I mean it is good, isn't it? To have something to offer people as an explanation as to why I am always so tired. Why I cannot do all the things they want me to do. Why I have to pace myself. It isn't so easy as all that. With the label comes the stigma. This idea of weakness. That if I use it that I should feel some shame about it. And you would not think that. But I found it very quickly the rules of the game when it came to Fibromyalgia ... that there was this profound stigma with it in the medical community.

I think to some extent I would have been doomed to disappointment anyway. Given I had always thought so well of my childhood doctor that others simply did not do well in comparison. And there is this sort of inevitable sense of disillusionment that comes into play when you understand fully that they are all too human with all to human faults. And you have a chronic illness that is so stigmatized but also something that really is difficult to treat at the best of times... so you have to get used to the fact, doctor or no doctor you're just not going to get better. It is just an unfortunate realization to know they cannot be of any help... when you had this childlike idea that they would be there for you, that even if there was no cure, they would have productive advice or understanding.

While there has been up to this point in my young life of all of 21 years frustrations with having no defined medical illness... aside from the hypermobility syndrome to explain my pain and I believe I was also by then told I was a 'chronic insomniac', I had coped with the increase in symptoms and pain through trial and error. So I was coping pretty well. However, while my mood was improved reflective to this status quo my symptoms were worse. And I would have flare ups of pain and symptoms. Sometimes it was because of a job that would significantly cause problems, or just really increase my baseline pain and fatigue. Other times it was some intense pain for no particular reason that would just really decrease my mobility. And finally I went to a doctor and laid it out for him because I was feeling really unwell. I don't remember specifically why I had gone back home to see a doctor but I knew that I had felt really cruddy. But I was having a hard time saying specifically why... I would say I'm in a lot of pain, but that I have hypermobility syndrome. I have just can't get enough sleep and I'm so tired all the time, but I have chronic insomnia. And I did this with a few other symptoms, such that they were all explained by other things doctors had diagnosed me with, but I said eventually, but I feel particularly worse. He naturally wanted to send me for blood work to test me for rheumatoid arthritis, but I told him it was not that, that I had been tested for that and looked at that before. And that in fact the test would come back showing high normal or possibly high than that but it had been ruled out. Because as a child I had been tested all the way up until I was 16 every six months because of that bloodwork, but the specialist had said 1% of the population naturally has a high normal ANA count so it is just something wonky about me. But something wonky that got me to see a specialist the second go around because as anticipated it did come out high so he sent me back to a specialist to rule out rheumatoid arthritis. So I am lucky he took my pain seriously and that my blood work is wonky.

That second specialist asked me a hundred questions. Took a family history, of which, I did not even know that much then. Did a physical exam... which if you are familiar with Fibromyalgia you will know as the tender point exam. Rather painful long after the exam is over I might add. He then recommended exercise, but didn't specify the sort, not like i wasn't rollerblading for exercise or walking to and from the University (I didn't have a car, so walked everywhere)... so you assume exercise means Exercise. Of which is a mistake to make, because it causes a great deal of pain and at times injury to do the wrong sorts of exercise... to go beyond what you should. Which I did. I had no idea. And he also said 'You are too young for medication'. Lovely. To be diagnosed with something of which there is to be no treatment. Sort of an empty gesture isn't it?

But I had the new shiny Label. I must say it was sort of anti-climatic at this point. My mother and I were pretty sure I had it already, or something with similar symptoms.  My father had been diagnosed with FM, so now I had a family history, so the specialist didn't even have to work to hard for the diagnsosis. And at this point unlike at 16 when i saw the first specialist, I had begun to accumulate more symptoms on the list. Nevertheless it is a relief to finally have it defined. To know the illness you have. To know that doctors will know the illness that you have. That you can explain to others the illness that you have.
Research shows that men who report pain are more likely to receive painkillers for their symptoms while women are given antidepressants and are more likely to have their pain dismissed as “emotional,” “psychogenic,” and “not real.” A female patient suffers constant, life-disrupting pain and is told it is in her head. She’s given an antidepressant rather than a diagnosis or a painkiller, and her anxiety grows. As her quality of life deteriorates and her pain worsens, she becomes depressed. When she reports being depressed, her initial physical symptoms of pain are attributed to her depression. The farther along she goes without recognition or validation of her pain, the more distrustful of the medical establishment she becomes.
—  In the Kingdom of the Sick: A Social History of Chronic Illness in America by Laurie Edwards
Well it turns out... I was to be forever young when it came to Fibromyalgia. If I was too young then for medication... I was too young for a very long time. The stigma this invisible disability holds is such that you are amazingly invisible to the medical community. They have a true blind eye for it. Oh, well, they have their own personal stigmas. I would not say they all think the same. Some think you are simply depressed. Others think you are just exaggerating. Some think it is just 'all in your head'. Or they simply do not believe FM exists... had one say that in an ER situation... can't argue with that, however, the fact he then didn't look into the reason why I was there? Sort of poor form, given an x-ray would have determined the cause in that case. Others have no clue how to treat it. But in the end... I never got treated for it. Not ever. Not Directly. Some doctors did quite well catching comorbid conditions. Some doctors would treat symptoms that cropped up that they knew how to deal with... like when I suddenly didn't just have sensitive skin but eczema like reactions. Or when my digestive system because irritable bowel syndrome... diagnosed that, then didn't treat it. Things like that. Some were very good doctors for those sorts of things, some not so much. But never the core pain, insomnia, fatigue, cognitive issues. Not even when actual FM medications came out. I was eventually put on Lyrica as a migraine preventative my a neurologist... not too long ago. They were all aware I had it because I would be told things like 'That is just the Fibromyalgia' as in you don't need to worry about that or I can do nothing for you there. Now some would just say that while others would take a symptom seriously, look into it, determine it was FM, then not take it seriously. And so then neither would I... if it was just FM I assumed, that meant it wasn't doing any real harm to me, right? Must be true. That is what they clearly determined.

So what I could figure out from this was that Fibromyalgia was a condition that could really affect your life but would not kill you. Symptoms would be problematic but not a concern in any way, so you just had to figure out new ways to manage whatever they were or ignore them as best you could. Pain was something they could not be bothered with at all and so that was something I just had to cope with, but I had been, still it was important to understand I would always have limitations... so some jobs were simply out of the question and aim for a desk job by all means. Doctors were not useful for actual management or treatment of FM but they were useful for management and treatment of comorbids that made things worse health wise, for the fact in general I got sick more often, had a tendency to sprain things and of course for symptoms that cropped up that needed to be explored.

It is not as if as I said, I did not learn to cope as I went alone. I'd been doing so before I was diagnosed, so no real difference there. Try herbal treatments. Diets. Exercise. Just learn to deal with the pain. Learn moderation and your limits to what you can and cannot do. Learn standing too long is painful, sitting too long is painful and that you must shift position a lot and get up and move around, and take breaks. And I learned to study by taking breaks, eating snacks, taking notes, underlining text... any way to fight the fibrofog. And while there is frustration with the fact doctors simply do not treat that medical condition I thought they simply were of no use for that and I would just have to deal with that fact and only mention things that really aggravated me and see them for the other conditions that stacked up... like migraines which were in this time frame episodic and getting more frequent as time passed. It would have been useful to have guidance and some sort of plan of action... but doctors then, and even now, don't have pain management skills so maybe they had no plan to offer. This would be a real issue later, but when I learned my own coping skills for pain and had already adapted, it was more symptoms that were of a concern and doctors lack of use in all things fibro that was bothersome. As I said, a true blind spot.

So what is the real issue with this medical stigma then? What is the true damage it does? Other than the fact I had a medical condition and pain that was not being treated? Other than that? You encounter all this profound stigma you learn your opinions of your symptoms and your pain really don't actually matter all that much. You have an invisible condition that is so invisible it isn't even treated. You can see when you are being dismissed. See when you are being ignored. Know when they refuse to take a symptom serious... only to find out months and months later it had nothing to do with the FM box they put it in (and felt free to ignore). You can tell if it is FM pain it is meaningless. But.. I learned migraine pain is real. That can be treated... so it is real. They would practically throw medications at the migraines (no, not painkillers) but many, many preventative medications and of course triptan abortives... because they had a book for all the medications to try on this pain that was at least real to them. Until... they ran out of things in their book to try because the migraines became too frequent. Off to another specialist I went. But to doctors... that pain became 'chronic' and therefore 'not an issue' for them. I regularly saw doctors because of the migraines, in the end more so for refills than anything, rather than anything to do with FM. My asthma and hypothyroidism once caught were treated pretty effectively so that was just a refill thing too. And I can say they are far more comfortable treating migraines. It is a known pain. A less stigmatized pain, when not chronic. They have a grasp on what they are supposed to do. Less stigmatized opinions about it, when not chronic. It never failed to amaze me at how Much treatment I was offered for migraines, when it was so nonexistent for Fibromyalgia. I can be eternally thankful for some of the accidental overlap such that I accidentally got some treatment for FM on the way to being treated for migraines.


So your opinions seem to not to matter with this invisible illness. What effect does that have then?

Doctors often discuss how people who have chronic pain engage in 'sick behavior' and engage in less activity thus eventually creating this sick persona. It infuriates me to hear such things. The lack of interest in treating chronic pain, fibromyalgia is insane. It is in fact barely there I found. Some of that is gender discrimination according to studies... doctors feel women complain more about pain so they apparently feel by not treating it we must have some sort of insane pain tolerance even though they do not seem to realize they are contradicting themselves there. Through this process of stigma, which you don't even consciously understand as stigma when you are younger and don't even consciously react to it, your behavior changes in response to doctors. You become more reluctant to discuss pain, because you don't want them to think you are exaggerating or complaining... so you becoming more stoic. You never discuss how pain ever may affect you emotionally because you don't want them to label you as depressed... they may simply then feel free to ignore your pain altogether then, it is just the depression after all, right? Mental illness stigma being as profoundly existent as others. And we as chronic pain patients become very aware of it without even being Aware of it right away. You become less inclined to mention symptoms because again don't want to be seen as complaining or worse a hypochondriac... so you just mention when a symptom gets pretty bad or a new one crops up, seems important enough and sticks around long enough you think it worth mentioning. Conversations with doctors become these coded, weird things were more is not mentioned than mentioned. How is that even beneficial? But it is what they have taught me to behave. And when I say... hey this pain is getting out of control. Nothing is done. When I say... this symptom is peculiar... it is put in one of the existing boxes, sometimes with no investigation at all. In the end with some doctors there is just simply a failure to communicate altogether... me with my stoic careful language, them with their indifference. You have to eventually realize when you become in enough pain or the symptoms are severe enough... your language, your soft use of pain terms, your stoic demeanor, inhibits you and you must teach yourself to be more blunt and to reveal a little of the truth beneath the facade. If still there is this casual indifference on behalf of the doctor... you must seek another. Pain may be invisible but it can be deadly just the same.

And I'm not saying good doctors do not exist, I am saying the stigma on invisible disabilities in the medical field over time can affect how a person reacts to doctors because it is pervasive. It is not one bad experience and one doctor... it is a learned behavior over time that says 'doctors do not want to hear this... be careful what you say and how you say it.' A dangerous thing indeed.

What it actually means is that while my FM wasn't treated, which is true, but the occasional extreme symptom was or a comorbid condition was caught. And I don't even know what they could even do about FM to be honest back then. I do know it would have been nice for some actual effort. Or to see a specialist once in a while. I used to think it never harmed me any because I coped but the truth is it did progress and those comorbids did stack up and the idea of pain centralization makes me wonder if they had done something would those migraines have gotten out of control like they did? But it was what it was. The stigma is there and it is but one influence on how having an invisible illness affected me once a 'label' was put on me. It may be seen as ironic you know because with hypermobility syndrome, my very first label, that pain was seen as real and when I had problems with standing for long periods at a job a doctor took that seriously... he could do very little about the pain... but the pain was a real physical thing... as soon as the label of FM was applied to me, it eradicated the previous one and my pain became this elusive thing that could not be treated or defined or was it even real at all? It must be noted no one thought outside of the box... treatment of pain is not always 'painkillers' and not everyone is thinking that when they want pain management. Sometimes we are just looking for some actual direction. Especially with both of those conditions. So without direction I just tried to fumble my way along, likely like many people. And tried many, many things along the way. With FM though some of the other symptoms become a pretty big problem themselves and we have very hard time finding solutions to those ones, but still, no direction.

So you might say I have had a long history understanding just how invisible chronic pain is within the medical field and just how unequipped they are at treating it. However that stigma really did warp my opinion about my own illness. How I talked about it. How I thought about. How frustrated I was that doctors did not accept it or acknowledge it. This perception changed over time. But the early influence changed how I interacted with doctors in response to their stigma... which means it affected how I interacted with them in regards to medical treatment altogether. It affected how I thought about pain and became less inclined to express it. It made me see pain and my illness as a weakness to be overcome and something to be embarrassed about. And even though research on FM has come a long way and my frustrations about lack of treatment and stigma have made me far less inclined to see my illness as a weakness or something to be embarrassed at, rather they should be embarrassed at their lack of education and proper pain management strategies... it does not change history. It means even when the migraines became chronic, even daily, I struggled to remain in the same pattern of behavior I had learned. Have to push through the pain. Have to be stoic when in pain. Showing that you cannot endure the pain... is a weakness. You don't want to admit you cannot handle it... they will just call you depressed... think it is all in your head. You want them to focus on the treatment, not stigma. Never ask for painkillers... they won't give them, they will think you are exaggerating or a drug seeker. Always minimize the pain... then they will believe the level of pain is real. None of this helps when trying to get effective treatment, but I admit, nothing really would have. Migraines come with stigma as well. Painkillers have a massive stigma. And this belief that we can somehow function with chronic migraines on a daily basis when people with episodic migraines cannot is pervasive. And all these concepts born from this? These are the things you use in real life. These are the things that fail when the pain is too much. But by then people will say 'you worked with it before, didn't you?' People do not understand how we cope with chronic pain, because they cannot imagine existing with it, but we do cope with it. They cannot understand how at a certain level that is no longer possible, but clearly that should be something easy to grasp, since the pain we cope with at the baseline level is something they could not comprehend in the first place. People are full of contradictions like that they they will one day realize when they have to live through it.

Well, okay, stigma in the medical field had an impact on me... or lack of treatment was certainly there and the stigmas of doctors I encountered had an impact on how I thought about my illness and pain. But I still had a life. I still finished my BA with distinction. I went on to get my Masters in Philosophy. I had a real love for Philosophy. Metaphysics in particular. I would still focus on that but perhaps these days... more phenomenology or existentialism would be more my flavor. The problem was that the FM was not treated in any way and I had to work during my Masters and for my BA I only worked during the summer for that specific reason... it causes a lot of stress to the body when you have no 'recovery' time... in this case working on weekends was enough to really increase that baseline pain. The migraines were at the chronic level, the symptoms getting more intense, persistent migraine auras making a real vibrant appearance. I was just trying my first preventatives at this point... and discovering how some dramatically affect thinking, not something you want as an academic. My grades were slightly affected, but again not something you want at that level... the pain was hard to think through, it was hard to get to classes. Difficult to get research done, to write and edit research papers. Partly the pain, partly the aphasia and brainfog. Either way I got my Masters, of which I am proud of, but I knew I could not go for the Phd. It would require working throughout the year. It would be far more effort. I knew medications would have an effect. The migraines were just not under control in the least. So I took a year off to get them managed and took a simple job to pay my student loans. Turns out working full-time, given the affects that has on my insomnia, dramatically increased the migraines. I never got below 20 migraines a month since then. I found a job at a bank that had at least consistent hours and no shift work. And I began a career there. And I hovered at the 20-25 migraine point initially but they got worse. Until they were daily and stayed there. Two things helped with the FM accidentally. One neuro put me on Lyrica as a migraine preventative, that did not work, but did slightly improve the FM pain. One doctor put me on a sleeping pill called zopiclone because she said I was sleep deprived, which was why I was getting so much sleep paralysis incidents and so intense morning migraines... it did help with the morning migraines and it most definitely helped get a good 5 hours sleep at night, which helped with the FM... sleep is a big deal with FM. You try to build a life and career and try to function through the pain and for a time you think it will work, if only you can make it through until a neuro comes up with the right preventative to slightly reduce the pain. You just have to survive a bit longer...


The very first blush of stigma touched me from the medical field and embedded itself deep within my psyche such that it corrupted my very concept of my illness and pain itself. The stigma? Is damaging in many ways... there were errors made because of stigma from doctors. When they do not listen. When they make assumptions. Conditions are not treated in my specific case. I could talk about those errors but doctors are human and I assume they all have these concepts about pain... and what pain is valid and what pain is not. What pain should be treated and what pain should not. But the affects of stigma affect the person on a deeper level. You understand that your illness is not important. That you are not always believed. That your pain isn't important. That it is not believed. How can this not profoundly affect how you behave? How you think about your illness? How you think about pain? How can this not affect how you interact with everyone else in your life?



Home Remedies for Migraines (Conditions A-Z)

#Migraines can't #kill you... one of the worst myths

Because of course they can. If you have chronic migraines and have visited a forum for just a year you will learn this fact clearly. It will occur to you if you know this fact from a small forum how many times does it occur in reality? Seemly when you speak to doctors it is so rare it is barely an issue at all. They brush it off. It is frightening at times how unconcerned they can be about the risks associated with migraine.  Migraine- Never again  in this article Ellen mentions some of the situations migraines may kill:

"How can Migraine kill? Here is a short list you may never have before considered:
  • Migrainous stroke;
  • medication side effect;
  • medical mistake;
  • misdiagnosis;
  • accidental overdose, even from simple over-the-counter medications such as acetaminophen;
  • accident (often resulting from Migraine symptoms or side effects of medications)
  • the purposeful ending of a life (suicide) to escape unrelenting pain and other debilitating symptoms, severely reduced quality of live, the stigma associated with Migraine disease, and more.
I’ve been to conferences where I was shocked to hear the comment “Migraine never killed anyone.”  I thought, “Wow. They sure don’t live in my world. How can they not see what I see?” I was really confused and frustrated."
And perhaps she is right that the disparity in this belief comes from the fact cause of death is never listed as 'migraine' and doctors never know why their patients never return. Maybe it would be a good thing if they knew of the causes of death of their patients... maybe that would be a bit of a reality check.

This belief that migraines are not Dangerous however has directly affected me... and so I assume many, many others. I can list a few cases related to doctors but I am sure I am leaving out more, but the important ones were pretty damn important.

1) Status migraines: Status migraines are potentially dangerous. We are told to go to the ER if we have a migraine for more than three days that has not stopped. Has not been broken. Unrelenting. In the beginning I didn't know this so I didn't. When i learned this I did, but I soon found out the ER did very little About them. They also did not abort the migraines. They did exactly what they would do for any migraine, and no more, and didn't care if it didn't work. As if they did not believe me when I said it was a status migraine. So I stopped going every time, I got them so often and the ER was so painful an experience. But at times... they were brutal and lasted far more than three days and I would go, and it made little difference. I realized these people do not take migraines seriously. They do not think it is dangerous for me to be in this state for so long. They will not really help me. Plus there medication of choice, toradol shots, caused me a lot of stomach pain and IBS discomfort due to issues I have with that sort of thing. So I very rarely went. They keep track of how many times you go I found out, I assume to know if you are a drug seeker or exaggerating. Not that it ever made any difference. But I certainly didn't go for every status migraine, and eventually very, very rarely at that. And so it happened one day on like day for or five of a status migraine I woke up all groggy and confused from the pain to find half my hand was numb. A thick numbness that seemed so solid and cut my hand right in half, certainly nothing i had ever experienced before. And over the next few migraine days it spread over the hand until my whole hand was numb. Not an aura for sure. Then the migraine passed after about a week and a half ... the numbness remained, sort of changed into numbness, plus a prickly pain and temperature sensitivity. I went to my doctor he speculated it was a persistent aura... obviously that wasn't right. When to my neuro months later... he said it was permanent nerve damage caused by the status migraine. One neuro speculated I had a stroke in my sleep. So this says, yeah, status migraines comes with risks... but had I gone to the ER they wouldn't have aborted the migraine, so the risk would have remained... stroke and nerve damage combined, or just the nerve damage alone, either theory. Because they don't take the risks seriously. And I didn't go because they never took the risks seriously. But... if it was different and I had gone on day three and they were knowledgeable enough to understand the risks and put the effort into aborting that migraine I would not have the nerve damage I now have.

2) Suicide: unmanaged pain is a pretty high suicide risk factor I have discovered. Too much acute pain is maddening. And I can't see how someone would think otherwise. And yet doctors constantly diminish the significance of our suffering because they are afraid to treat the pain. I acknowledge treatment is complicated, but we are not idiots, we have been in pain a long time, we know rebound headache risks, we are not drug addicts... we simply want some quality of life and to be able to function. Trying to function when in too much pain, having no ability to control it or any options... well that is call raw desperation. And so I eventually tried to kill myself with some real spontaneous but adamant effort. My doctor was not even surprised. And why should he have been? I wasn't. Did he do anything about it, is the real question. And the answer would be no. Because that would require treatment of the pain. In fact, when he sent me to another neuro for a 'second opinion' he made it worse by taking away my weakly effective rescue medication. Now that was insanity. Almost believed he wanted me to kill myself. Because trust me after one failed attempt... I would know enough to get it right the second time. And the only thing stopping me was my family and living for others, is a rather sad way to exist. This obsession that painkillers and rescue medications are evil is pure insanity and they are simply increasing the suicide risk in people in too much pain to function, having to function, because doctors are not willing to claim they 'cannot work'... and so of course they are not surprised when we try or do kill ourselves. Yet they may fling NSAIDs like they are candy like it is somehow a better option... until it rots out your insides and you cannot take them anymore. When you say that at an ER 'adverse affects to NSAIDs' that just screams drug seeker, even though it was the doctors that screwed you by giving you too much for too long. But painkillers? God no. They are evil. So when someone commits suicide from migraines... I want to blame the doctors really... I want to scream at them 'why didn't you try to manage their pain? Why didn't you consider their quality of life? Why are you so obsessed with your image? And the stigma associated with opiates you cannot see past it to see how much they suffered? You would not have tolerated that sort of pain... and you expect someone else to? You caused this.' But of course, they don't see it that way. They don't see pain as a problem. Chronic migraines when daily and so very few can be treated and no effective preventative... a massive problem.

So I have had many, many status migraines not properly treated... any of which could potentially have caused me permanent harm or death... one of which has caused me permanent harm... one in the future of which may cause me permanent harm... the lack of understanding in this is pretty dangerous. And the suicide risk from pain alone is pretty dangerous when you consider how ambivalent some doctors are about treating pain. And that is just Two examples I have experienced myself. Ellen mentioned things like car accidents related to auras... well that could have happened to me as well... when you have no choice but to work, have persistent migraine auras and migraine associated vertigo, that is not a good situation to be driving at times. Medication side effects... my issue with NSAIDs had it been more internal, as in if I had not noticed the bleeding... a person most definitely can die from that.

#Invisble #Illness Part One... in the beginning there was no label

In honor of upcoming Invisible illness week I thought I would write about some of my thoughts about my history with having an invisible illness through my life. Not the infinite details of it but some thoughts on it.

"On the psychological level recognition means support. As soon as we are ill we fear that our illness is unique. We argue with ourselves and rationalize, but a ghost of the fear remains. And it remains for a very good reason. The illness, as an undefined force, is a potential threat to our very being and we are bound to be highly conscious of the uniqueness of that being. The illness, in other words, shares in our own uniqueness. By fearing its threat, we embrace it and make it specially our own. That is why patients are inordinately relieved when doctors give their complaint a name. The name may mean very little to them; they may understand nothing of what it signifies; but because it has a name it has an independent existence from them. They can now struggle of complain against it. To have a complaint recognized, that is to say defined, limited and depersonalized is to be made stronger. John Berger"

So in the beginning of my chronic illness journey I had no label. My mother could tell you a great deal more about the specifics of what my health problems were. The nuances that came up and when the first appeared. What tests they first ran and why. I remember diabetes was ruled out because of that horrible juice so saturated with sugar it made me want to gag. But when it came down it it I have frequent visits to the doctor... either every three months or six months to check my high normal and sometime higher ANA count. They were trying to rule things out at that time. I know my mother began to suspect Fibromyagia and so did I was I got older, but I don't think the doctors really looked at that at that time. I had a school complain about my absences due to these and the fact I was skipping school... my mom was outraged since my grades were quite why and so what did it matter? Fact was I skipped school to take naps... what a little rebel. When I got to high school I learned to skip a class to go home for a nap.

But really what this is about is living with a chronic illness without a label. You cannot tell people you have this or that. So you say nothing. You have no reason for why you are tired all the time. Why you are sick all the time. You don't tell them you are in pain. You have no label to defend you. Sometimes people will call you lazy. Or antisocial. And you cannot defend yourself. I rather fit into the anti-social role anyone since I was a reserved introvert so I took that one on. You are forever existing with this illness and no one is aware of it.

My memory is more clear in my teens than younger. I remember the fatigue. I was always so tired all the time. My insomnia had been around since I was younger.... my brother and I used to share a room together and we would be taking and next think I knew mid-conversation he would fall sleep. I was amazed he could fall asleep do fast. I never could. I had pain most often in my joints, like my ankles and knees. My first job at 12 taught me I could feel so much pain everywhere and even more so in the joints such that when I finished work it was a profound relief. I knew then I could never work a job on my feet. I would have to work a desk job. I kept at it for spending money but that pain never went down. I understood it wasn't normal. But it was my normal and it is not like I was different than any other kid really. I don't think it affected me overly. I still engaged in activities, like I liked to Rollerblade at night even though it caused pain in the knees and I really had no balance and that did lead to some injuries. But I could never sleep, so sometimes I wanted to tire myself out. And it is not like as a child I was not engaged in swimming lessons, skating lessons and gymnastics as my mom would put us in something every year and I think this was good... for the joints and for exercise. There was just this constant overlap of illness that should not be there, pain that lingered, fatigue that was constant and insomnia that never went away... along with other symptoms and bloodwork that couldn't be explained. Because in those early years it was noticeable and some situations very much so to me when I did certain things that overtaxed me, oh and then wicked PMS I would not wish on anyone, but overall I know it was quite mild then. Just the hints of what was to come. Like I had sensitivities to chemicals, smells and light. Things like that. Unexplained rashes, bruises, easy to scar, scars that didn't heal well...

Now when you are chronically ill and you are don't have a diagnosis... it is a quest for a diagnosis. You are sure once you have on and begin treatment things will improve. I knew after all by the age of 16 with my very first diagnosis some of my pain was from hypermobility syndrome. It just didn't explain all the symptoms. At that time though I had a very good doctor that I have faith in to find the answer. I believed that when he did I would trust he treatment. I didn't know all doctors are not like him. If they were that specialist would have helped with the hypermobility syndrome more or told me he thought I was developing FM. It is all about the quest. Your mother is determined to find out what it is so she can help her daughter. And in the end too... I wanted to know what this was so something could be done about it. That is what doctors do right? Fix things?

I also began to have this sense that my body is betraying me but it would get my mind. I became determined to find a job I was passionate about and to do that. No matter that I had to deal with physically, I could cope with, as long as I had a job that engaged me I would be content. I just wanted to be content in life. I loved writing stories and if I could become a writer and make a living at it then that would be one job I would be passionate about. But I also wanted to go to University and see if there was something there I could be passionate about as well. I understood I was physically limited and that would limit me in some ways... but I would get around that and find a way to achieve a life that would work with those limitations. It made sense to me at the time.

And I have faith in doctors because the one I had was so good and I had never been exposed to others to compare him to. Because you see, even as I felt the way I did, had no concept of it getting worse. Staying the same sure, but not worse. I only saw the potentially of it getting better.

Yet from the ages of 16 to my diagnosis of FM at 21 my symptoms did get worse quite a bit. I had a hard time adjusting to University my Freshman year because I came out of my reserved shell and want to play with all the other boys and girls... but by then the pain and fatigue, combined by some serious insomnia were quite a bit worse. I was constantly overexerting myself. I learned a very hard lesson in moderation and limitations. It made me depressed for a year because of the fact I realized I was that limited by my body. That I could not keep up. My first encounter with doctor stigma was a doctor who assumed my pain and fatigue was depression because I was a young woman, and ignored the fact those symptoms where already there. But my depression that year had been strong and profound, even if it was caused by my failure to cope with my illness so I let him put me on an antidepressant called Paxil. It made me sleep for hours, like 12 or 14 or 16, and I would not want to get up to eat or go to classes. Those things seemed meaningless. I was an emotionless zombie. Everything seemed meaningless. Except sleep. Two things cleared the haze. I went to final exams and could not open the door to the building, instead of going around... I went to bed. Flunked. Second... I pulled on a pair of my 'thin' jeans and they were not 'baggy jeans. I was now quite underweight. I said screw it and stopped taking the pills. But... that semester was ruined. I failed classes, thankfully Freshman classes do not reflect end GPA. I did take a year off to get out of my depression on my own. And when I returned aced every class. But because of that doctor I'm hesitate to treat depression related to illness with medication as a result. I don't believe they understand it well enough.

 However when I learned to cope I was far happier and succeeded well, but it meant I had to decrease the amount of friends I had to just those who understood I had those limitations. I had to completely adapt how I did school work also because I discovered brainfog and cognitive dysfunction... but I learned to work around it in different way. I didn't like it because those symptoms affected my ability to Think and that was Important to me. I had a very mind vs body approach to my illness at that point. And illness with no name still but one I was figuring out new ways to cope with nonetheless. My sense of accomplishment in getting passed the depression and coping with my illness to thrive at University was great though. And those were very happy times for me. Very painful summer jobs... customer service, a maid, a baker... all reminding me I needed a job I could do that I was passionate about to succeed in this world and that would make me content. I did not even believe I will be limited so much as to not succeed in this. I still believed I could achieve my goals, had I not just done that? Had I not coped with the pain and symptoms and began to achieve honor grades? Did that not show I could work through any obstacle in my health and achieve my goal? Still have ambition?

I only every revealed the nature of my symptoms to those close to me. Otherwise no one would have known I had any illness defined or not. I was just 'clumsy' or 'absentminded' or a 'chronic insomniac' or 'really double-jointed'. It is like a secret. A secret you can hide because no one can see it.

Me from my University days with my boyfriend, when we first met



Did I even give myself a wicked #migraine... lack of sleep trigger

I got the opportunity to do an insomnia panel and since I have been an insomniac all my life, complicated more so by pain, I certainly was more than willing to apply for it. It was 10 AM my time which most people would not think is an issue, although functionally speaking mornings are not my best time mentally. At the best of times. The issue is that lately I have not been able to abort my migraines at all with the Cafergot and taking it has made me rather ill, so have sort have been reducing the amount I take it anyway. I am out of painkillers (well I have one, but I need to save it) and my painkiller is just T3s which I can only take one of a couple times a week anyway... but when I do choose to, obviously it is when I am in acute pain close to bedtime to help me sleep. So this does mean I have had a lot of acute migraines I have not been able to treat.


And this means I have not been able to sleep. Often I have not been able to fall asleep until after my spouse leaves for work. So sometimes after 7 AM. Lately this means if I do not sleep in late I will wake up with a migraine. And it kicks around all day. A significant problem in itself. I have tried increasing sleep medication one day which helped kick the migraine for one day. Slept in another which was a waste of a day but that helped. But my sleep cycle is right messed up. Simply because the migraines are completely not managed in the least bit. Not really anything unusual there but clearly I have to get a triptan back instead of the Caftergot, which will slightly help on some days that I treat with a triptan for part of the day.

So I fell asleep yesterday... or today I suppose around 7 AM ish. And got up at 9:30. I woke up alert though. Because if you get less than four hours of sleep you are not in the least bit groggy at least. I did the panel. I even stayed up after, being awake as I was. And then massive migraine. Granted I got up sort of feeling on the edge of one. With aura trailers and intense visual snow and vertigo. All signs not good signs right there. Which is why I can no longer do that trick I did as a kid to correct my sleep cycle by just staying up all night so I will be sleepy the next night... because the auras go nuts and the migraine is always very, very acute. Which it was. It hit with a bang. As it does every time I get up early. I'm not sure if it is the lack of sleep or the light or both. But if I get up later... I can delay the onset of the migraines. In this case, clearly lack of sleep which I am well aware is a massive migraine trigger for me.

I thought, well then, I cannot function with this level of pain... I will have a nap and maybe, just maybe that sleep cure for a migraine will work better than anything else. And I actually managed to fall asleep within an hour. Into a very solid two hour sleep, far better than I had in fact had that night. Very vivid migraine dreams, but very solid sleep. And yet, woke up with still an acute migraine and still nasty vertigo.

Honestly not sure how I am going to be able to sleep tonight now. I thought since I got up early I should be able to go to bed early and finally get my sleep cycle back on track. But once again the pain is out of control and I have no way to manage it in the least bit.

30 Things About My Invisible Illness You May Not Know


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30 Things About My Invisible Illness You May Not Know

 
Self-portrait of me with my migraine auras



1. The illness I live with is: Fibromyalgia, hypermobility syndrome, chronic migraines, asthma and hypothyroidism.

2. I was diagnosed with it in the year:
This is insanely hard to answer with a memory like mine and that many chronic illnesses. Jeez. Hypermobility Syndrome was 1992, which would have made the Fibromyalgia about 1997, chronic migraines were about 2000 or a little before, hypothyrodism about  2001 and asthma about 2007. Approximately.

3. But I had symptoms since: The hypermobility syndrome and fibromyalgia can be seen in childhood, just took a lot of tests and specialists to muck about with that. Migraines I'm a little iffy on myself since when I became aware that the menstrual migraines were migraines and didn't have the same symptoms or present the same way... well clearly they could be the really bad 'headaches' I had since puberty around that time. The migraines themselves occurred occasionally prior to my diagnosis with them right around the time I was diagnosed with FM, but remained episodic in nature (if you don't count the hormonal ones which at the time were not diagnosed) until 2000 when I saw my first neuro. So they were just more frequent when I was first diagnosed with migraines and chronic before I was diagnosed as chronic... ahead of the perceived schedule. The hypothyrodism actually was caught very quickly as the symptoms, I had assumed were FM, actually were pretty intense... really erratic heart rates, nasty leg pain and rapid weight gain. The asthma, again I assumed was FM and migraine medication side effects getting worse, was caught within six months of it progressing. Maybe it existed for awhile since I did brush off the symptoms for some time, but when I started persistently mentioning it... only took about six months for that doc to take notice.

4. The biggest adjustment I’ve had to make is: I have made many. I could say learning moderation and limitations as when I was young, that was a hard adjustment to make. I could say the compromises you must learn to make, as it is hard to learn your goals have to be different and ambitions less ambitious and careers discarded. But, no, those were hard, yes, but the most difficult adjustment is simply having to be in moderate to severe pain and understand I cannot do anything about it. That I have no medication for it nor will be given a medication for it. That I just have to be this way and somehow learn to function like this. The adjustment being the knowledge the pain will always be there and that I must mentally and emotionally learn to adjust to it because I have come to understand my limited capacity to function through it.



5. Most people assume:
If you can function one day you must be able to function the next. Like they have no concept of how pain affects one's ability to move, think, focus, concentrate and remember. Like other symptoms can not have a dramatic roll in that. Like you don't want to function every day.

6. The hardest part about mornings are: Becoming aware. I often wake up confused and groggy. If I don't have a migraine... I am in a pre-migraine state or have vertigo. Often have not had much sleep. I often wake up confused at what time it is and can just stare at the clock trying to understand what it means... and then what it means to me... and what day it is. It makes me late. And I have no sense of time even when I try to get moving. I move around like I am drunk. Slow and clumsy. Forgetful. if I am not utterly and completely prepared the night before for what I have to do in the morning, it can make me late. A full blown migraine? And I can be extremely out of it along with the pain.

7. My favorite medical TV show is: It was House. Can't say I watch one now. Not really my thing.

8. A gadget I couldn’t live without is:
My iPhone. I use it as a second alarm system, a back up alarm in the morning. I use it for reminders. I have a planner I am trying to get used to. I have pain trackers. Medication trackers.

9. The hardest part about nights are:
Painsomnia. When acute pain meets my insomnia and they merge together into a beast that cannot be conquered. A horrific thing. I'm on leave from work right now but this beast is not good when working. Painsomnia is something that is a torment if you are working... that intense pain knowing you will get little or no sleep and have to work the next day. You mood plummets like a rock. Lots of time for pain to contort your thoughts at night.




10. Each day I take __ pills & vitamins. (No comments, please)
- 5 types of pills and 3 (B12, D and Calcium) vitamins that I must take, as in doctor recommended... lots of vitamins and supplements I have and take on a weekly basis but not daily.



11. Regarding alternative treatments I:
Have tried plenty when i can afford to. Many are worth a go, some not worth a go. Depends on what is recommended.

12. If I had to choose between an invisible illness or visible I would choose: I have no preference. There is stigma with both sides of the coin. I understand the stigma with invisible illness comes a great deal with people incomprehension of not being able to 'see' how ill we are. Or 'see' pain. But with visible illnesses people treat people differently all of a sudden... like a cripple, like lesser than them, gawk at them, doubt there mental capacity at times just because they are physically disabled... and I sure there are even more on there. So we all have stigmas to deal with... I don't particularly have a desire to choose which batch of them I get.

Although I suppose I would choose losing a limb if offered that in trade... because while I think it would take awhile to adapt to the loss, I would, then I would still have the other limbs... and no other pain or illness to deal with, there would be an end to the process... just all the work put into dealing with it, adapting, physio, artificial limb, learning to adapt to that... then I would eventually be pretty functional again. The work would have results. Knowing my luck though I would have phantom pain or something. But assuming not, that would be the end of it.

13. Regarding working and career:
When i found a career I could do I thought finally I could hold onto something. Be functional in society. When my migraines went to daily I desperately tried to hold onto that despite the fact I knew the pain was too much, missed too much work, had all these short term leaves of absence, and my employer clearly wanted rid of me. But I wanted to hold onto it and be financially stable, and be a functional member of society and have self-worth. I had to come to terms I wasn't capable of it physically, mentally or emotionally. However, that doesn't resolve how someone survives the financial stability issues without it. Or if they can continue on long term leave... if not... then work it is... and how long can a person survive that when they know they can't?

me at work on 'Rodeo Day' where we all had to dress rodeo style... I don't do cowgirl style so this ended up being the only cowboy-ish had I could find and used it every year.


14. People would be surprised to know: That I have a Masters in Philosophy. Not many people know that. Given the job I ended up in. My chronic migraines were a factor in what made me decide I could not continue to get my Phd. But, yes, I do love the philosophy. It was a joy of mine. I think it would surprise people to know I accomplished something with FM and chronic migraines both being a factor.

15. The hardest thing to accept about my new reality has been: Right now it is just that the pain rules my day. I have to live in the small gaps it gives me. I have only small windows of time before it consumes me. The hardest thing to accept about that is that when that migraine pain kicks in, it is very hard to think and focus... brain function goes down hill. And I try to think of alternative work solutions and I became aware quickly this problem of untreated pain is too large that it limits all possibilities I have come up with. It is not like FM that can be worked around in different ways. Chronic migraines affects all things. I realize how hard it is to do small things in the house done, or one errand, or tiny things.... and I'm done... most people could get all their chores done and errands. And I realize my ability to function is so low... all the times I have in a day is moments in which to function. My reality is living in those gaps. And that is hard to know that is all I have right now... those small gaps.

16. Something I never thought I could do with my illness that I did was:
Years ago I went on a trip to Scotland and Ireland for a wedding. And obviously trips cause an increase in pain. But we went to this place in Ireland where a bridge spans from the mainland to an island, a walking suspended bridge. And you walk to it, walk across the swaying bridge and back and get a certificate to show you walked across this bridge... which is quite some distance up. My spouse and I decided to go check it out (forgetting it wasn't 1km but 1 mile, and not both ways, but just there, so a 2 mile walk) and not flat land, up and down hills. So I got there hurting. Crossed the bridge of vertigo fun. On the way back the FM pain really intensified so it took about four times as long to get back with me moving exceptionally slow and in agony. But I freaking made it and I got my certificate. And I still have it. And when I look at it and am not proud I crossed the bridge... I am proud I made the bloody walk. The Lyrica I was taking then helped a bit, not sure I would have made it at all without. People stared at me I was walking so slow... I was in that much pain. But screw them. They don't couldn't comprehend how someone who looked fine was walking so infinitely slow or why. All I care is that I made it back. It was a profound relief to just stop moving. I did it because I wanted to, even though I knew it would cost me... had not known it would be that bad, but I knew to some extent.

This is the view from the walk Back... trust me that bridge is very high and flimsy.


17. The commercials about my illness: Well they are pretty idiotic. People prancing around it fields and tossing their children about. Then... the long list of nasty side effects... and you're like, well, forget about some of those. Might want to kill yourself... so watch out for that, but you won't want to, because you will want to kill yourself. Maybe your liver will implode... so if you start to turn yellow... might be a bad sign. Side effects often include symptoms of what it is treating so that may be tricky to notice. And even if you avoid all the pitfalls... you won't be prancing around anywhere or lifting small children.

18. Something I really miss doing since I was diagnosed is: I miss going out for a few drinks with friends. I miss having a social life. I even miss silly things like being able to go on amusement park rides.

19. It was really hard to have to give up:
Always the things I wanted I suppose from life. The things that are most painful is when life doesn't meet expectations right? And you have to make those hard compromises because of pain. So I had to give up pursuing my academic career, which was harsh. Dealing with infertility was difficult and then understanding that maybe that was for the best. Then when I found a job I formed into a career being unable to function in it... has been yet another harsh reality. I don't particularly like being non-functional and dependent and not financially stable.

20. A new hobby I have taken up since my diagnosis is:
When i was younger with FM I began writing fiction a lot. I still do. I find it an escape to write about other worlds and other people. I publish ebooks under a different name actually now. I also picked up blogging... that was also just to get out my frustrations about my illness and to connect with others.

21. If I could have one day of feeling normal again I would: Leave the house, visits all my family and then go out and do something fun.

22. My illness has taught me: Empathy. If there is one thing I can do, it is see the other side of the coin. 

23. Want to know a secret? One thing people say that gets under my skin is: There isn't anything in particular the gets under my skin. It is usually people's tone.When they imply by their words that I should feel guilty about being ill or causing an inconvenience to others because of my illness, such that I should also take the blame and guilt for that. It gets under my skin because I do feel guilty that I cannot be what I want to be, and functional in all contexts, and 100% of who I am... so immediately I do feel guilty for being ill. And then I feel angry that they made me feel that way because I should be finding ways to work with my disability, not feeling crippled by it and 'if only I were 100% healthy' and they have no right to blame me for being ill. It is a horrible way to treat someone. And to be honest I have lost a lot of respect for people who have treated me so.

24. But I love it when people: Offer to help me out with small things that they have no idea are not so small for me. There are just things that are difficult when you are boggled down with too much pain. You forget things a lot and so having people there to remind you of appointments, or to take medication are awesome. A spouse that used to, when I drove, always fill my gas... as I ran out of it on more than on occasion. A spouse when I worked who always cooked supper without complaint because I was too exhausted from the pain of working and the pain level at the point quite high. A spouse who still does all the shopping. A mom who drives me to all my doc appointments these days. All these little things add up to some pretty big things.

25. My favorite motto, scripture, quote that gets me through tough times is: I don't really have any. I sort of like 'This too shall pass' when I am in acute pain, like the 9 or even creeping higher and incapable of moving or thinking... I often repeat something over and over and over again to try and block out the fact I am rolling in agony. And that is one, but it is not something I am fond of at any other time because of course this too shall pass... into another migraine and another and another. haha. I also like the saying "The world breaks everyone, and afterward, some are strong at the broken places." Because to me it is a very true statement of fact... we all suffer and survive some battle, and carry those scars and it is those scars that make us stronger isn't it? Sort of like it is better to have loved, and lost than to have never loved at all. I like to think the many years of chronic pain makes me strong in my broken places, it is just that so much pain makes many broken places and many more after it. So it is a hard and constant battle.

26. When someone is diagnosed I’d like to tell them: That is difficult because FM is so varied for people. I like to tell them that it is not necessarily disabling. That it won't necessarily become so. That although it seems pretty bad to begin with one can cope with it once you begin to learn your limits and moderate your lifestyle, but it isn't easy and you will mourn for the person you were and feel guilty about what you feel you cannot be. It requires a lot of adaptation and for that time period the adjustment is brutal but afterwards you begin to settle into it and you can cope with it and exist within those parameters. However, sleep is a vital thing to be taken care of. Other treatments are hit and miss so do what works. And don't do what doesn't work. A lot of medication isn't necessarily a good thing. No medication isn't so grand either.

When it comes to chronic migraines I aim for realistic. Realistically treatment is difficult when it reaches the chronic state. There typically are no immediate or easy solutions. Preventative medications take about three months of a trial to even know if they are doing anything, aside from side effects, so as you can imagine, given there are about a hundred of the damn things, and combos... that if the first does not work, or the second, or the third, of the fourth... it is just a matter of keep trying. It takes time to find something that will decrease frequency Or intensity Or both. Triptans are the most effective acute treatment, if they work for you. Otherwise there are NSAIDs, like toradol, and opiates, which the last being iffy for neuros to prescribe. Then I would say remember too much of a good thing... is a bad thing with migraines. As in everything you take to treat a migraine if taken too often, rule of thumb more than three times a week, could cause rebound headaches... the swiftest being opiates. Also included are OTC medications, which are also bad for rebound headaches and most people do not even realize it. Rebound headaches will cause a constant headache, strong, sharp headache in addition to the migraines. If someone isn't told this... it can in fact be the cause of their chronic migraines. And the only way to boot that, is to go off all medications... and that isn't a pleasant thought... so better to just avoid that one. So, we often juggle medications, triptans and one would hope a rescue medication (NSAID or painkiller) so that we do not go overuse either and still can treat the migraines... assuming your neuro prescribes more than just the triptan, which they do not always do. Also journal your migraines early so you can catch the triggers, Before you have so many migraines it seems like existence is a trigger.

27. Something that has surprised me about living with an illness is: That it is surprising what a person can endure and cope with. I struggled a great deal with FM when I was around 18-19 and when I got through that it was like I had a real Victory. And we don't really get those with chronic illness. But I had. I had figured out how to mentally and emotionally cope with the pain and after that it was easy to be me. It was easy to let myself laugh, to just feel free to joke around and be me, within the limitations I had modified for myself... knowing I needed to not over-extend myself as I had. And it was freeing. I had the same pain, same flare ups during summer jobs which were very nasty, same symptoms, but I coped with it all immensely better. And then along come the migraines getting worse and worse as each year passes, symptoms getting worse, persistent migraine auras, and migraine associated vertigo. Then years of the migraines being daily. That pain level surpassed my ability to cope, all strategies I designed I used, but they faltered under the constant onslaught of acute pain and migraines lasting over a week straight, and sleep deprivation. People would ask me at work, because I still worked (missed a too much, yes, had a leave every year and half it seemed... but still worked... just not much else at all in my life)... they would ask me 'How do you do it? I can't imagine working with that pain every day?' And I think of all the pain... I am not sure how I survived, except survival was the only goal. I was no coping very well, but I was surviving. So what surprises me most is that we will do anything to endure, to survive... to function... even though people think the exact opposite.

28. The nicest thing someone did for me when I wasn’t feeling well was: My spouse does nice things all the time. But the best story I have is from a complete stranger and I think it is the nicest thing because he didn't know me at all but did me a huge favor... and that is the best random act of kindness ever. I was working at a hotel at the front desk on Christmas Eve late shift. I got an acute migraine, with intense auras and vertigo. I took my abortive, but it was a pill, and at that time I used to get horrible bouts of uncontrollable vomiting with migraines, especially with vertigo. Still do with vertigo sometimes... it is the intensity of it. Anyway, I began to get sick and sick and sick, over and over. The pill never had a chance. And I had no more, and certainly could not take another right away, because maybe some had gotten in there. I didn't know. Then I started getting sick the other way, because diarrhea was my new migraine symptom and often came with these serious vomiting bouts. So then real quick I was getting quite ill. Shaky. I could barely stand, let alone function. The pain was massively acute. It was clear to my boss... who was helping me out front every time I had to get ill, that I couldn't work. She was a very understanding boss. She phoned everyone she could. No one could come in. I knew it was going to be hell for me. I wasn't sure how I was going to make it to be honest. I had trouble just standing my legs shook so much. But I tried my best with the customers. tried to smile and everything, even though apparently I Looked ill. Pale and sick. Then... in comes a stranger to me but known to my boss. He used to work there a decade ago. They get to talking as I lean for support against the counter. She mentions me and why I look as I do. And he says he is willing to take the rest of my shift... on Christmas Eve even though he is a Guest and has no clue who I am and certainly doesn't need to. I was stunned, but she agreed and next thing I knew they were packing me out the door and sending me off with her muttering worriedly about how I could not walk straight. That was the nicest thing someone has ever done for me and one nice boss as well, since she helped me out that entire time. I had to get a new job, my doctor specifically told me so. Said I could not work shift work and that it was causing my migraines to become much more frequent and severe. He gave me a painkiller temporarily until I could get a new job, because I told him I could not just quit without having another... I'm not irresponsible. And my boss understood why I had to leave but said if I ever needed to come back she would hire me in a heart beat. It is rare to find a boss like that. My next employer I had a great boss like that, until they changed management then not so much.

29. I’m involved with Invisible Illness Week because: I believe in raising awareness for FM and chronic migraines. I also feel it is important that people understand how these and other invisible illnesses impact the lives of people. And how stigma can be quite damaging.

30. The fact that you read this list makes me feel: Delighted you made it through all that. Bravo!


A new image I worked up on a poem I made... for #migraine Misfits

I made an image for Migraine Misfits page using my poem from the Putting Our Heads Together Poetry Contest, 2013     I could have sworn I made a blog post about my entry in that contest but I guess not. Or I fail to see it. Anyway I submitted a piece called 'Dancing on the Daggers Edge' which won first place this year. Poetry is pretty personal so I was proud of it but at the same time not sure what to say about winning. I'm sort of really introverted and self-conscious about these sorts of things. And maybe I would not have done anything with it at all but I do like the symmetry to it and the metaphors I used so to help add some images and awareness for Migraine Misfits I decided I would use it. The imagery is meant to be vivid. This constant balance or dance we try to maintain but always on the edge of pain... then the slice of it... a dagger being a good one I think for this. This idea of a battle, struggle, pain... but no blood, no physical sign of it... an invisible disability. We'll see if it goes over well, given it is poetry and the image I used is fairly basic.

Dancing on the Daggers Edge





Dance on the daggers edge

Feel the slice; cut but not slain

Dance on the daggers edge

Prick every nerve with fiery pain



Cut on the daggers blade

Fight the battle; war but no victory

Cut on the daggers blade

Struggle to survive with no mercy



Stabbed by the daggers point

Suffer the agony; pain but no bloodshed.

Stabbed by the daggers point

I am slain but not bled.

 




 

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