My little migraine classifcations... not the real ones...

1)The migraine without aura- Mild, moderate or acute. Can have any of the other symptoms (nausea and light sensitivity). Tends to grow in strength slowly over an hour. With plenty of time to treat it before it gets acute, or endure it if it does not.

2)The migraine with aura- your warning is the visual fireworks. Negative, positive, sparkles, blotches, waves of light. And any other aura symptoms, like tingling, numbness, hearing problems, blurred or double vision, problems speaking, thinking, moving...

3)The midnight migraine- A migraine that starts when you are asleep, gives you the most vivid and spectacular dreams and then pulls you awake from the pain. Gotta love waking up like that.

4)The manic migraine- a migraine that instead of making you lethargic with a brain of pudding, it gives you a jittery boost of energy and creativity prior to coming on. Often with trembling hands and twitches, making you look like a recovering crack addict. But you can think and talk a mile a minute... talking without thinking first, just super chatty. But get a lot done.

5)the right side surprise migraine- 90 percent of my migraines are left sided or both sides. Once in awhile I get one on the right side and it feels quite a bit different than the others. If it hits on the right side, it will not hit both sides. It is more piercing than throbbing. Often it does not last as long. And doesn't like to respond to treatment so not nice in that way.

6)The dang it is bright out migraine- a migraine induced very quickly from the exposure of light. Comes with a heavy dose of eye pain, double or blurred vision. And spectacular auras and warping vision.

7)the monster migraine- this migraine will start quickly, with a piercing electric pain in a very specific spot. It will get rapidly worse with movement, until you cannot move. Most often it lasts exactly 8 hours, but no abortive has ever managed to get rid of it faster. It can also last days, where it becomes a status migraine (a migraine that lasts three days with no relief) and this is due to the fact it does not respond to abortive. And so it can cause an ER trip or two. Also may come with piercing chest pains.

8)the silent migraine- I have only had a few of these, maybe three. This is a migraine with all the neurological fun, but no pain. The tingling and numbness can be felt throughout the whole body. The aura can be very intense. You may feel very odd, may even feel like you are having a stroke, but there is no pain. Kinda odd, but hey, no pain.

9)The Fell down the rabbit hole- this is what you would call a migraine with Alice In Wonderland Syndrome. It is crazy trippy. Fall down the rabbit hole here. Lots of vertigo. Lots of objects appearing larger than they are. The floor or ceiling really close. Objects distorting. Lines warping. Times distorting. Floor like pudding.

10) The Painsomnia migraine: The migraine so acute it merges with your insomnia such with there is no way you can sleep migraine. Your pillow feels like it might be made from rocks. And you end up just laying there wishing for a coma. And eventually getting up with the same migraine.

11) The killer migraine strikes again: What I call as status migraine... keeps going and going and going. Until you want to chop your head of. You cut the top of your head of, get a spoon and dig the migraine parts out.

12) The morning migraine: Hey... good morning... thought I'd wake you up with this crazy acute pain instead of that annoying alarm clock. Loath these because already fullblown so hard to treat and there goes the day.

13) The ain't it fun your a woman migraine: the evil mentrual migraine that comes before your cycle and through it. For me it is just one acute migraine that keeps on going. Often get violently ill as well. Lots of vertigo fun. And... crave chocolate. 

"Monsters don’t sleep under your bed. They sleep inside your head." Literally? AHHHHHH

"Monsters don’t sleep under your bed. They sleep inside your head."





And then they wake up and try to claw their way out of your brain. The movement makes you really nauseous at first. And you can feel them trying to get out the eyeballs right away… easy access point I figure. In some people this can cause a lot of visual distortions as they try to push your eyeballs out. Then they are pretty frantic when this doesn’t work and just go nuts. This causes a great deal of sharp pain felt through the brain region and throbbing due to the pressure they cause with their upward movements. Also because they generally are digging about so much the pain can be felt in many facial areas as the hit more than a few nerves. And I think as an alternate route some of them try to go downward and that results in a great deal of neck pain. Anyway clearly it is a futile effort on their part because monsters live in the head and cannot escape the physical confines of this area… however migraine monster cause an insane amount of pain when they try to escape due to their ability to stomp on and claw every nerve around them and the pressure induced by their movements. And they try to escape quite frequently in some people. Stupid buggers never learn.
Old post from June 2010 that got misplaced but want to save:

The daily migraine :

"The American Headache Society is reporting new research showing that migraineurs have abnormal neural activity all the time, not just when we’re having a migraine attack.   In particular, this research reports abnormally excited activity in the parts of the brain responsible for sight and vision. Some have speculated that this may be why bright lights and loud noises are the most common migraine triggers — the idea, I suppose, is that if those parts of the brain are overexcited already, then it is more likely that stimulating them even more will cause an attack."

Yes, we have abnormally excited brains all the time, folks. Which unfortunately does not mean we will exhibit any benefits from this, like spontaneous brilliance or awesome eureka moments. Which I think is rather unfair of my brain... if it all excited, then it should at least put that activity to good use. The fact that one of those areas of the extra always excited part of for vision does not surprise me, since I am also photosensitive and have a prolonged aura to boot. Perhaps this study will lead to more specific anti-seizure meds, or perhaps we should be taking higher dosages than we once thought needed for migraines.

And we are on a roll... killer migraine strikes again three days and counting.

 Just another day in the life. But I feel ranty. It has been extremely painful these last three days. Waking up with migraines. Going to bed with them.

It is not fun when we hit that migraine streak. Not when you have chronic migraines. It means... you are not going to be able to treat the pain in there. I got a migraine and they are daily so this is not a surprise. It was an intense one so I did take a T3 that night to help me sleep. I actually missed my window of opportunity there. The painkiller did slightly dull the pain but not really well and not in enough time for me to fall asleep so the pain got back to where it was... and I couldn't fall asleep. So I didn't. And the pain got worse. And worse. So I got up in a fit of frustration at 7am with a level 9 migraine. This was yesterday. And it kept on at that. I did get some sleep in there. A fitful in and out sort of sleep. But something. Pain remained up there. My spouse came home with some lovely triptans. I thought it would be a lost cause given it was day 2... but it actually really aborted quite well for hours. Then came back at a level 7... then crept up to an 8.

However, I slept quite well last night. Thought I would wake up fine. Nope. Woke up with a migraine. Full on 8. All day. Can't take a bloody thing for it of course. Not a damn thing at this point. And have luck sleeping as well. And this beast is very painful. It is not the 9 intensity but because I spent so much time in the 9 yesterday I have some very intense neck and jaw pain and sharp jabbing pain in the back of my skull.



I don't generally wake up with migraines. Not my norm. The lack of sleep one made sense given I could not sleep from the intensity of the previous one. But... the intensity. And the waking up with migraines repeatedly this month.... is likely due to the depo shot just failing all bloody month and me being in some hormonal hell. Which tends to lead to migraine streaks without end. The difference being it isn't full one hormonal migraines and therefore triptans are working but triptans are not fun with the side effects. I don't enjoy resorting to them above what I prefer because the migraine is at a 9 instead of an 8. Now the distinction may seem small... but a 9 is screaming agony that literally incapacitates me and I cannot function on a basic level. It must be treated. On some level even if it is just dulling it down a bit. An 8 is extremely bad and I certainly have issues with my ability to function on several levels but at least I don't freak my spouse out by my level of incapacitation and so forth. And when you have menstrual migraines like I got without the depo I could get streaks of 9's such that I would not be able to sleep... and then on day three end up in the ER solely from desperation... as in the pain was maddening. And then they would do nothing. It was horrific. The fact the depo isn't working and I am getting really high intensity migraines from morning to night that I can't treat... not in a hormonal window but all month is disturbing to me in the extreme. At least I could predict them before. Now it is driving me mad. And I'm so tired from them. Too much pain. Today has been just draining from just the constant pain, after all the pain from yesterday (aside from the few hours gap).

Anyway, nothing new to this. I mean untreated migraines. It is a fact of life. I would like to have that gap in the morning again here once the depo kicks back in to normal and my migraines go back to normal without this random hormonal flux. And the intensity... man I would like a break on that. But tomorrow... yet another non-treated day. Got to give myself a nice break after triptan use these days. Besides I had to use two on that brutal 9... so sort of makes me screwed.

Destined for pain

When you have Fibromyalgia the pain process involves is this central sensitization... your brain becoming more sensitive and heightened for pain. There is a lot of pain dysfunction in FM. We feel it faster, for less stimulus, and longer, for no reason. People can get FM it seems for no reason but some after an accident, injury or illness. Like a trigger event traumatizes that nervous system and sets into motion this FM process which the person might have been predetermined for. And with migraines again people who are episodic go into chronic migraines at times with this process of central sensitization... the brain becoming more sensitive to pain and to triggers making the attacks more frequent. But certainly many people have episodic migraines and never have this occur.

With FM you sort of think, well, I have a brain wired for pain it is hardly surprising when i got migraines it continued with that process. But... did I have a brain designed for this, set up, if you will for chronic pain prior to anything of the sort?

In the journal of Pain research " has shown that there are clear differences that distinguish the brains of those with chronic pain from those without such pain. Chronic pain sufferers consistently show reduced volume in the brain’s gray matter, the cortical structures key to perception, movement, memory and reasoning. Researchers have also shown that compared to healthy patients, the brains of chronic pain sufferers are wired differently, in ways that suggest that physical sensations and emotional responses are bound more tightly together. " (When the pain is all in the head)



But they had to answer which came first. The chronic pain and then the chances structurally, or the structural changes then the chronic pain as a result of injury.
"They did so by recruiting 46 subjects, who had experienced a first episode of back pain that had already lasted four to 16 weeks, and performing regular brain scans on those subjects for a year.

Focusing largely on the bundles of axons that carry nerve impulses across the brain, they found that within two months of recruiting patients, discernible differences in the structure and integrity of that “white matter” could be used to distinguish subjects whose pain persisted from those whose pain was beginning to resolve.
By the 12-month mark, the structural differences in white matter allowed researchers to distinguish — without error — subjects whose pain had disappeared from those whose pain was persistent.

Compared to subjects whose pain resolved, subjects whose pain would become chronic also showed differences in the density of connections that lashed their nucleus accumbens — a central structure in the brain rewards, motivation, pleasure and reinforcement learning circuit — together with their medial prefrontal cortex, a switchboard for decision-making, emotional response and long-term memory.
The authors made further comparisons between the original 46 subjects and two new groups: healthy recruits and people with a established history of chronic pain. Those comparisons showed that, from the earliest scans, the brains of subjects who would go on to become chronic pain sufferers had structural abnormalities that made them look much more like the chronic pain veterans than like healthy controls or the subjects with back pain that went away.

And throughout the study period, the white matter and brain connections of subjects with back pain that went away looked much more like those of healthy control subjects than they did like the brains of subjects whose pain became chronic.

The brain’s white matter normally deteriorate with age, and the Northwestern researchers made a shocking calculation to show the difference that separated subjects with and without chronic pain: compared to healthy controls or those whose pain subsided, the white matter in the subjects whose pain went on to become chronic “exhibits 30 to 50 years of additional aging”."(When the pain is all in the head)
I suspect in cases of FM where it is a syndrome with many potential causes and symptoms this might not be of any use... but FM does change the brain structurally. There is atrophying in certain areas and they are at least suspected at this time to do with the pain dysfunction system in FM... more in the lack of dopamine to relieve pain in those areas. Nonetheless one does wonder if having a brain structurally set up for pain also is a factor in developing conditions of this nature.

When it comes to migraines... they are again not an injury and yet some people, not over using medication, do slowly get more and more migraines until they are chronic. Is this because of central sensitization? Is it literally because there brain already had the set up for chronic pain to be mapped out?

And if we have such a brain makes one not want to have any injury that might just not heal right. Like we need more chronic pain to add to the mix.

Oliver Sacks presentation at World Science Festival to discus his book Hallucinations.

Hallucinations- With Oliver Sacks  "In the first installment of the World Science Festival’s new series, Science & Story, famed neurologist Oliver Sacks joined award-winning journalist John Hockenberry to discuss Sacks’ latest book, which explores the surreal world of hallucinations."
Oliver Sacks discusses Hallucinations and types in this presentation. Well worth watching. It is fascinating.

However, his book Migraine is on my list of books to buy. It sounds like a fascinating read for many reasons.


 "The many manifestations of migraine can vary dramatically from one patient to another, even within the same patient at different times. Among the most compelling and perplexing of these symptoms are the strange visual hallucinations and distortions of space, time, and body image which migraineurs sometimes experience. Portrayals of these uncanny states have found their way into many works of art, from the heavenly visions of Hildegard von Bingen to Alice in Wonderland. Dr. Oliver Sacks argues that migraine cannot be understood simply as an illness, but must be viewed as a complex condition with a unique role to play in each individual's life." -Amazon

 
"Hallucinations, for most people, imply madness. But there are many different types of non-psychotic hallucinations caused by various illnesses or injuries, by intoxication--even, for many people, by falling asleep. From the elementary geometrical shapes that we see when we rub our eyes to the complex swirls and blind spots and zigzags of a visual migraine, hallucination takes many forms. At a higher level, hallucinations associated with the altered states of consciousness that may come with sensory deprivation or certain brain disorders can lead to religious epiphanies or conversions. Drawing on a wealth of clinical examples from his own patients as well as historical and literary descriptions, Oliver Sacks investigates the fundamental differences and similarities of these many sorts of hallucinations, what they say about the organization and structure of our brains, how they have influenced every culture's folklore and art, and why the potential for hallucination is present in us all." -Amazon

Fall walk by the lake

My spouse had been on holidays for the week of his birthday so been spending some time with him. We went to dinner and then took an evening stroll by the lake in town. I want to get some good walking time outside in this nice weather we have in Fall. This not too hot in the day, with nice coolness at nigh. No wide fluctuations. No sudden storms when it is hot that are a massive trigger. It is a lovely season trigger wise. And I need to get that nice exercise that doesn't really aggravate my brain if I do it when the sun is not at its peak. It was a lovely walk. A bit shorter than usually since I was very sore from painting the bathroom. I will blog about that later but the pain in the body but mostly for walking the knees, ankles and back. But I thought a walk might prevent them from getting worse... sort of relax it out maybe. Got some nice dark pictures with good contrast over the water as the sun was setting. And it was nice to walk with my spouse as well.




Illness belief structures and #invisible #illness


I remember when I was younger and had Fibromyalgia and episodic migraines I thought very differently about my illness than I do now. I remember taking my first Philosophy class and being introduced to Rene Descartes the famous dualist where the mind is separate from the body. You have a mental substance and a physical substance. Connected, of course, but separate. And when it came to my illness I was very fond of thinking this way, even though when it came to philosophy I thought otherwise. But I very sharply defined my Mind and my Body as these distinctly separate entities.

My Body had betrayed me. My Body had failed me. My Body was undependable and unpredictable. It had clearly demonstrated it had Limits. It gave me Pain and discomfort and Fatigue. I knew it would always be like this; a burden I had to bear. A shackle limiting my options in life. Making me choose things carefully. Plan things carefully. Limit how much I could do things with my peers. How much fun I could have. Limit what I chose to do with my future and what jobs I chose to take. How far I could walk even. It wasn't the enemy by any means but it was simply something that caused me problems and was an obstacle I constantly had to get around.

My Mind would not fail me. It was that on which I could succeed in a career, even though my body had failed me. Even though I knew this theory was not completely solid because both migraines and fibromyalgia caused 'mind' symptoms like brain fog, memory issues, my very well known absent-mindedness ... these did not stop me from being intelligent, from learning, from succeeding in my studies and would not stop me from perusing my future goals and ambitions. (well, all of it would in fact stop me eventually, but I didn't know how severe migraines could get). I was still Me. My personality was still Me. My mind would adapt and cope and change, but I would still be Me. And I would still be able to Think. And be creative. "I think therefore I am" and that body business must be endured.

And I think to some extent this helped me cope early on. To understand that not every aspect of who I was, was affected. That I could still do things and succeed with my illness. But it is only a limited belief structure because pain gets worse, symptoms get worse, and clearly that 'mental' realm is affected... and then what? What then of my identity?

However, years and decades go by and bit by bit this distinction falls apart and you firmly understand that mind and body is a very relative distinction. They are so interconnected that we often tend not to think about all the ways one affects the other. Even though there are clear cases of it. Depression has physical symptoms but people don't often think of that. Anxiety seems to be rooted in both. Fibromyalgia has a lot of cognitive dysfunction symptoms, sleep affects mental acuity, fatigue is on both levels, pain is physical but affects memory and concentration. Migraines are extremely painful, again pain affects memory and concentration, but migraines comes with a great deal of neurological symptoms that affect language, communication and perception of reality. We begin to understand how important how we think and feel affects how we cope. Chronic pain is a dysfunctional neurological signal... not even an injury located in the body... possibly why it is so easy to doubt. Possibly why researchers are understanding with chronic pain new and different ways to retrain the brain to back the clock up on the chronification process. You feel it everywhere but it isn't anywhere specifically so you have to remind yourself of that in the case of Fibromyalgia. In the case of migraines you are quite aware of where it is.

Either way, it isn't about the biology of it or the neurology of it... although certainly every time something comes up in regards to research it is fascinating. So that is what the new theory is. Fascinating. It is about the internal definition of how I looked at my my illness. As this force exerting its influence on my body. But that my 'selfhood' remained intact which you think of as your mind, thinking, personality. All the things that are in fact affected by illness to some degree or another but clearly I wanted to think of it as just 'pain' and just something that would limit me in the 'physical realm' of things. Our selfhood adapts a great deal while we cope and that in-itself causes it to change in many, many ways. It would not be called 'coping' otherwise. The me decades ago would not be able to cope with the sort of existence I have now if it suddenly befell her because I have adapted in many ways. Ways we often do not even acknowledge. As if those changes and strategies we have picked up are not fundamental to our adapting, living and coping with an invisible disability. All these little ways we learn how to get through a normal day around obstacles no one else perceives. Pretty amazing. Vastly underestimated. And in some ways it became the most problematic and frustrating when it was obvious my illness and pain alone affected that realm I thought it would not touch. My clarity of thought. My focus. And of course with complicated migraine aura... my communication and ability to use language and recall things and words. It feels then like your illness leaves nothing untouched. Nothing sacred. Nothing that that is not limited and an obstacle and a struggle. The most difficult compromises I made were to compensate for these issues and work around them. Understand that the mental realm was just as affected as the physical realm whether I liked it or not. I also liked to believe the emotional realm was 'brief' little lapses due to extreme pain and that everyone would feel depressed when in acute pain but eventually I had to acknowledge that coping involves emotional wellbeing. Not surprising when you think about chronic pain, pain and insomnia, pain and emotions and roll that all together.

Eventually, you just go fine, fine. I am not a Mind or a Body. I am an Embodied Being and this Embodied being has an illness that affects its everyday states of affairs. Physical affects mental. Mental affects physical. And when we accept this we can understand how many treatments that seem idiotic may be beneficial. One example is acupuncture... doesn't seem idiotic to me, it has been around for a very long time, many studies show it can be effective... but no one knows specifically why it is effective... is it because of the body or the mind or a bit of both? Does it really matter? If results show it has been shown to help, then why not give it a go? Meditation is one that seemed a little flaky to me but again research really shows a great deal of benefits on that one, especially the more you do it so I think for people who can figure that one out keep at it. The fact is the brain does some amazing things... the science does not in the least bit comprehend and some of these treatments are taking advantage of methods that are training our brains a little in specific ways... because our brains have trained themselves in specifically bad ways to feel a crapload of pain, or with FM our nervous system is so hyped up methods to calm that down also seem like a good idea. That does not mean we will see a massive amount of results from any alternative treatment. If any. Maybe some. Some people some ways. Other people other ways. We are all different people who respond differently to different sorts of methods for different reasons. Just saying potential is there for it to be beneficial.

And most definitely saying understanding that we are not dualistic entities makes a great deal of sense when you look at any disease. Symptoms are multifaceted. Impact from coping is multifaceted. Coping is multifaceted. There is my mental wellbeing. My physical wellbeing. My emotional wellbeing. And they are all threaded together. I can't see my Body as something against me, that failed me. I am this entire entity. I can't see my disease as an enemy. It is a chronic condition. It is not going anywhere. I am not going to vanquish this foe. Defeat this enemy. Have that sort of victory that we seem to intrinsically crave and yet know doesn't exist. With chronic pain sometimes we battle with the lack of an end to it. Especially when the pain level is particularly acute and we have no particular treatment for it. That for me is a battle I struggle with the most. The constant onslaught of the pain with no particular way to battle it... and that knowledge hovering there that it simply will not end. I just need to seek improvements in this embodied whole that improve my overall quality of life in some fashion and help me cope in some way. To that end, I must understand that the battle to fighting pain is actually on all fronts... mental, emotional, physical, my entire being and that any slight improvement to my quality of life is something of an achievement. I aim to improve the manage the pain in any way I can such that my overall wellbeing is improved. By inches if need be. Day by day. Pain gap by pain gap.


Study suggests #migraine with #aura people can have vidual abnormalities in-between attacks

Again a study finds there is in fact symptoms between migraines. One study had illustrated that photosensitivity persisted to a degree in some migraineurs after a migraine. Since I have daily migraines, wasn't awed by this one, given I have pretty extreme photosensitivity all the time... but nonetheless it demonstrated the symptom persisted beyond the migraine event.

Common visual aura during a migraine attack


This study is more peculiar. In migraine with aura... do visual issues persist after the migraine event? In fact, they do.

"Researchers also recognize that migraine patients have symptoms in-between attacks – inter-ictal symptoms.  Could vision problems be one of these?

Researchers at The University of Melbourne in Australia did some in-depth study of 43 people, 17 with migraine, to find the answer.  And the answer was – yes.  Migraine patients do have visual abnormalities in-between attacks.

This testing was more than reading letters on the wall.  Researchers measured electrical responses of the retina, and used other tools to measure visual abnormalities.  They found that there was both retinal and cortical dysfunction, although it varied from patient to patient and could change over time." Headache and migraine news

Perhaps a reason to keep getting your eyes checked. Although many of us with aura may ignore that because it is all 'aura' business, perhaps we might want to continue getting that checked regularly. Secondly a reason to keep track of possible symptoms between migraines. My persistent migraine auras have evolved over time and become quite distorting at times, one wonders if some of those 'additions' are because I get daily migraines. Either way these studies of how our brains are affected between attacks are getting pretty interesting. 

Pubmed Abstract

Abstract

PURPOSE::

In between migraine attacks, some people show visual field defects that are worse when measured closer to the end of a migraine event. In this cohort study, we consider whether electrophysiological responses correlate with visual field performance at different times post-migraine, and explore evidence for cortical versus retinal origin.

METHODS::

Twenty-six non-headache controls and 17 people with migraine performed three types of perimetry (static, flicker and blue-on-yellow) to assess different aspects of visual function at two visits conducted at different durations post-migraine. On the same days, the pattern electroretinogram (PERG) and visual evoked response (PVER) were recorded.

RESULTS::

Migraine participants showed persistent, interictal, localised visual field loss, with greater deficits at the visit nearer to migraine offset. Spatial patterns of visual field defect consistent with retinal and cortical dysfunction were identified. The PERG was normal, whereas the PVER abnormality found did not change with time post-migraine and did not correlate with abnormal visual field performance.

CONCLUSIONS::

Dysfunction on clinical tests of vision is common in between migraine attacks; however, the nature of the defect varies between individuals and can change with time. People with migraine show markers of both retinal and/or cortical dysfunction. Abnormal visual field sensitivity does not predict abnormality on electrophysiological testing.



Headache and the Eye

A #doctor blogger talking about #chornic #pain

Now this doctor has realized there is most to the pain experience and equally understands how doctors can have a problem with communicating with chronic pain patients. It is a very interesting read  How doctors respond to chronic pain

"'I learned early in my life that a pain is almost never just a pain. The ripples spread from the nervous system into the sufferer’s whole life. If you stub your toe or burn your finger, it hurts but it’s quickly over. Anything more complicated – and especially the kind of pain that is recurring or chronic – impacts on the patient’s personality and relationship with the world. Pain does not happen in a laboratory. It happens to an individual, and there is a cultural context that informs the individual’s experience’. What a pain is, and whether it matters, is not just a medical question. Hilary Mantel'"
"Philosopher Havi Carel uses the term “epistemic injustice” to explain the gap between what doctors want to know and what patients want them to know. Our refusal to pay due attention and respect to our patients’ account of suffering is a “wrong done to someone specifically in their capacity as knower”. At its core is the “denigrating or downgrading of [patients] testimonies and interpretations which are dismissed as irrelevant, confused, too emotional, unhelpful, or time-consuming”. All of which must (ought to be) be familiar to doctors who have struggled with patients in chronic pain."

"'Patients give their bodies over to doctors and hospitals only to encounter inattention and indifference, not because they cannot express their suffering, but because their language is unvalued and unrecognized in medical culture.'"
"Doctors are taught to be sceptical of patients’ accounts, treating them as unreliable, insufficiently articulate, and subordinate to their own interpretation. But a degree of scepticism is necessary, not simply because accounts are sometimes inconsistent and inauthentic, but because accounts of suffering serve a multitude of context-dependent purposes and warrant a wide range of responses, for example, not everyone wants sympathy or action.
For patients in chronic pain questions such as, “Why me? Why now? Why does is hurt so much? Why can’t you tell me what’s wrong? Why can’t anyone help?” – and, just as important, their own, tentative answers to those questions – still need acknowledging even if they cannot be answered. When Sharon accused me of not listening to her, the problem was not simply that I was not listening, but that I was listening in the wrong way, I had failed to acknowledge her suffering and she didn’t believe that I believed her. In order to ask the right questions about pain we have to unlearn what we have learned about taking a clinical history; we cannot presume to know about suffering from a clinical history."

And then here... sound familiar. In one variation or another we fear what we say will be blamed for all our pain. If I am not coping well and depressed... the depression will be blamed for all my pain.

"In seizing upon simple explanations we contribute to the shame and stigma felt by people suffering chronic pain. Faced with chronic pain from undiagnosed endometriosis, author Hilary Mantel experienced this:"
"'I was aware that my condition was exacerbated by stress, and I knew that if I confessed to this, stress would be blamed for everything … besides, every visit to every doctor would begin with a lecture about my weight.'"

"'Chronic pain patients sufferers typically report experiences of isolation and alienation from their physicians and providers, from their care-givers, and even from their own bodies. … chronic pain sufferers rate the alienation they experience from their physicians as qualitatively worse than alienation from loved ones. Daniel Goldberg '"
It is very true. Often it seems it is not only a communication problem but this lack of interest in our pain... in our suffering. It seems we are never offered any solutions and help... anything to help manage the pain that is destroying our lives.

 He ends by stating it is important to listen and value a patients pain narrative. But this of course requires time... not giving us five minutes and rushing us out the door. Yes, we are patients that consume more time.

"Listening to stories about chronic pain makes doctors feel helpless, exhausted, anxious and at a loss for words. Paying close attention we might recognise that this is because the restitution narrative is inadequate and that we are trapped in chaos. I’ve explained how to listen for these different narratives in a recent essay about forgiveness: it’s both a warning and a ray of hope that we might be stuck in chaos for a long time (in the case I discuss, it’s 18 years). Recognising this is in itself a therapeutic opening. As a doctor I must resist the temptation to push toward this opening prematurely. The chaos narrative is already populated with others telling the ill person that “it can’t be that bad”, “there’s always someone worse off”, “don’t give up hope”; and other statements that ill people often hear as allowing those who have nothing to offer feel as if they have offered something."
"'To deny the living truth of the chaos narrative is to intensify the suffering of whoever lives this narrative. The problem is how to honor the telling of chaos while leaving open a possibility of change; to accept the reality of what is told without accepting its fatalism. Arthur Frank.'"


Migraine Face

This is migraine face. I had a wicked acute migraine all day. I'm on the cough hugging that blue pillow because I was having some serious nausea and hugging that pillow close made me feel better. Usually you take picture and you smile and look fine because you have that Facade on... so I thought here is Migraine Face... no Facade, just place laying there in too much pain to move or function. But the filter is used did diminish the really dark black spots under my eyes. Still you can see that wide eyed dazed look.

#invisible #illness Part 4: self interpreting the process

 The journey thus far: #Invisble #Illness Part One... in the beginning there was no label, #Invisble #Illness Part Two... The illness defined and medical stigma born and #Invisble #illness Part Three... the thing that hides itself #invisibleillness



As an introvert I have spent a lot of time over the years thinking about chronic pain and about the process I got through. Interpreting it and myself. The experience of pain and the experience of living with pain. People, doctors and life itself all have an impact on how I coped with fibromyalgia and chronic migraines. However I also am a very internal person. A very internal thinker. Very much thinking about how I react to external influences, why, how I cope, what factors affect my coping and just working through it all. For an example to my introverted nature when I was having problems coping when I was younger with my yet to be diagnosed pain and was depressed for certain... I had this book about curing depressed naturally. And there was one chapter on cognitive therapy. All about negative thought patterns and habitual thoughts. Writing down the habitual thoughts you had and replacing them with more realistic ones and so forth. This seemed... reasonable. So I read it, did it and treated my own depressed... from a book... all introverted style, It was extremely effective for me. I think on someone with my INTP personality type cognitive therapy just makes sense. Even one chapter in a book. Such an introverted thing to do though. Then years later I wrote an article about it because worked for me. (Chronic pain and cognitive therapy: taking care of your emotional health) And I thought someone would read that and go that makes sense and go pick up a book or find a therapist that does it. It amuses me that that book cured my depression and helped me change how I thought about my illness and pain... helped me then develop we ways to cope. I should really have wrote the author about how awesome that one chapter was. I had a 100% success rate with that book and a 0% success rate with that doctor who said I was 'chronically depressed' and put me on Paxil.

Yes, loads of introverted power.

I know that people repetitively ask the same questions of me 'how do you manage all the pain' or some variation or come up with similar suggestions I have tried... but I understand it is difficult to comprehend an invisible disability, coping with chronic pain, understanding someones pain. And suggestions usually come from a good place. Or because people don't know what to say, but feel they should say something. None of this bothers me and respond to each like I have never heard it before and honestly. There are those that do not come from that good place but see you as a problem to be fixed... and why don't you try this, and why isn't your lifestyle or diet perfect and why are you not doing enough to cure yourself and why are you not getting Better so you can make my life easier. And that is more difficult to deal with. I can try calm, rational knowledge but I find it often doesn't work. Stigma is something we all encounter at one time or another in different sectors of society and it is far less about us and far more about these ideas about what it is to be ill, what they believe should be done about it and this idea as someone who is ill you are somehow to blame for your plight but also responsible for getting 'better'. Certainly educating people on all the things we actually do in order to 'function' and all the things we have tried and are doing to potentially help with our illness can help enlighten people to the complexities of the situation... but we are not problems to be solved or fixed or gotten rid of.

However in all my time have a chronic illness I think myself in relation to my illness as much as I think about others in relation to my illness. I must know how I comprehend my illness and pain, which changes over time before I can understand my relation to others and my illness, which also changes over time. Stigma that I accepted as acceptable when I was younger I do not find so acceptable now. But I am more open and honest with people who have questions about how I cope or my illness... because I feel less inclined to hide it, since I no longer feel shackled by that stigma that influenced me when I was younger.

I started this blog to replace my journal and to vent and reach out to other that comprehended my experiences. It was cathartic and I needed that. I have always used writing as an outlet, either fiction, blogging or non-fiction. It morphed over time and it is more informative and less venting. I branched out into other social media with my Facebook Page which I love... a great way to express myself and share information. But writing about my experiencing with my illnesses has always helped me understand how I relate to it. What I think about it. And I write a lot about it.

I write just straight up informative articles. But sometimes I blog or write essays or reflection essays just on the experience itself. Because when I struggle to cope or even when I am coping well I just always think about the Experience. This Being in Pain. The Lived Experience. The chronic ill experience. And how this experience of living this life affects how I perceive the world, reality and time. And how it changes how how interact with the world. How it has changed fundamentally who I am... and not in a bad way necessarily.

What do I mean by that?

Well there are the Symptoms of course. Symptoms impact my reality and how I interact with reality and how people even perceive me. There is the pain of course. Pain impacts my ability to function, concentrate, my memory and my perception of the passage of time. There are the persistent migraine auras... which I blog about a lot. They have an impact that should not be minimized on my ability to perceive reality but at the same time I am fascinated at their ability to distort that reality and how that is not in the least an experience I can share but I try to explain it. There are the cognitive impairments of both fibromyalgia and chronic migraines that affect memory, concentration, written and verbal communication and all sorts of weird and bizarre things that are sometimes difficult to work around. All these things impact how I literally see and interact with the world... sometimes inhibit how I interact with the world, certainly distort my reality in various ways. How can that not have a profound impact on how I perceive reality? Every perception is affected, every sense distorted and memory unpredictable. And over time changes how I am perceived. I am 'absent-minded', I am 'clumsy', I am 'forgetful'... labels I wear so long I feel they are a intrinsic part of me even though they are symptoms.


There are the coping strategies. I am fascinated by how we automatically adapt to chronic illness and chronic pain on a basic level. Based on our personality and just based on the fact we must on some level function in reality. The first is changes to personality... and on some level this can be positive and on some level it can be negative. It is the automatic response to a constant stressor of a chronic illness based on our personality... as in based on our automatic habitual coping strategies we generally use and developed at an early age. The most fundamental one I think of is being introverted and this idea that when I am stressed... I retreat. I need to be away from external stimulus to feel better. But this can lead to 'the Hermit Zone' which it has quite frankly... too much pain, cut out everything nonessential and I just retreated too much. But there are other factors to our personality and how we cope with chronic illness. I used to be a very negative sarcastic person and very prone to melancholy. So when coping with fibromyalgia when I moved away from home was very difficult as that was my automatic response... very negative, very melancholy. I had to adapt and bring forth that other side of me that was very laid back and goofy... and that side of me counteracted it very nicely and once I coped with the negative thoughts I really handled it well. However when chronic migraines really amped up that seeped back in. Nevertheless I have often reflected on how my personality caused problems with coping initially, how it changed over time in positive ways to adapt to my illness in various ways and how later again it caused similar problems with coping. How being introverted I respond well to certain things, but also retreating too much is too... easy. The second factor I think about is how we develop our impressive Facade of Wellbeing in order to function in the world... for various different reasons in different contexts. And mine initially was very much a joking, goofy facade to help me feel better. And it just worked in other contexts to mask the pain from others so very functional. And I find it very interesting that the facade then becomes part of Who you Are even though it was initially just designed to help you function and hide the symptoms and pain from others. We change. We adapt. So our illness of course changes who we are but many of these things help us adapt, although some of them initially did not and that is how we learned to cope and over time we can see the positive changes.




So when people say we are not our illness... in some ways we are. It profoundly impacts us over time in many subtle ways that define how we cope, how we interact with others and how we perceive reality. It amazes me at times how we adapt to chronic illness over time. There is nothing wrong with understanding that it impacts our reality. It is an intricate balance reality that we constantly change as we develop ways to cope. I think of philosophers and how they talk of Being in the World... and for us it is Being in the World with Illness. Being in Pain. There is an impact to our reality on multiple levels.



Here are some of the things I have written at one time or another you can check out if you want. The Fogland is a funny one but really does go into all the various cognitive dysfunctions we can experience. The reflective on on chronic pain is more the difficulties and some of the ways it affects us. The last one, Philosophy of pain, breaks the pain experience down into its components and it quite interesting really. The short essays are on as I said those things that have fascinated me... I might write longer reflective pieces on of these days, but these ere designed to be short ones.

Short essays


Chronic pain and the facade of wellbeing
Fibromyalgia and the coping process
How chronic pain can affect personality

Reflection essays


Reflections on Chronic Illness: All about the Pain "I have fibromyalgia and chronic migraines both of which are chronic pain conditions. So I'm going to talk about the pain, which is something people intuitively get. I say migraine; they say 'ouch that sounds like a bad headache.' And then I say 'I'll give you a bad headache' in a low threatening tone. You see while people fundamentally understand the concept of pain, unless they have felt a great deal of it for an extended period of time they are not going to get chronic pain. It's a members only club I'm afraid. It is like understanding what a number is and then trying to understand what counting to infinity is like. Eventually it will just boggle your mind. Pain without an end boggles the mind."

Fibromyalgia Fogland: The Adventures of Cognitive Dysfunction  "Fibromyalgia(FM) is a chronic pain syndrome with widespread pain, fatigue, sleep dysfunction, cognitive issues and abnormal pain processing. It is a complex syndrome that can include comorbid conditions. While the syndrome is defined by the abnormal processing of pain we should not ignore the variety of cognitive impairments that develop as they have a strong impact on quality of life. The top three most mentioned fibromyalgia symptoms are pain, sleep dysfunction and, er, what was that third one? It is on the tip of my tongue. It is like my mind is in a fog and I can't quite think of the word. Oh, right. FibroFog. Which are actually a broad spectrum of cognitive symptoms but usually people are referring to the concentration issues and memory problems. Let's just say cognitive impairments. Or let's just say my brain is leaking out my ears. Whatever works. Point is people gloss over this array of symptoms but to those of us who have fibromyalgia it is a serious concern. Maybe because we need our brains to do things like think. Something to that effect. Now some of that is due to the impaired sleep but studies have speculated many of the issues with cognitive impairment might actually have to do with pain. Like being in pain somehow impairs one's ability to think and process memories. Weird. Maybe we should test that by getting someone with a broken leg to do calculus or remember lists of objects. I suspect there is something to do with that theory. Let me just explain a little of what can go on here shall I? Keep in mind, like with all symptoms the cognitive issues can vary over time and they vary from individual to individual of course. No firm guidelines with the syndrome."


Philosophy of pain  This is actually based on a paper I once wrote in University so quite some time ago but reflects on how I conceptualized the chronic pain experience.


I can't believe the side effects I get from #triptans are not common... in some degree.

Maxalt side effects
Heart Throbbing or PoundingSevere
Trouble BreathingSevere
Slow HeartbeatSevere
Abnormal Heart RhythmSevere
Fast HeartbeatSevere
Chest PainSevere
Chest TightnessSevere
Numbness and TinglingSevere
Serotonin Syndrome - Adverse Drug InteractionSevere
Heart AttackSevere
AnginaSevere
Hemorrhage in the BrainSevere
StrokeSevere
Toxic Epidermal NecrolysisSevere
WheezingSevere
Giant HivesSevere
Allergic Reaction caused by a DrugSevere

 I made a post on the Migraine Misfits board about how hard it is to determine where the line between mild side effects and side effects that are of a concern is. Not the obviously concerning side effects of triptans, but the ones where you know it isn't normal but the side effects in general that are mild are not great either... so hard to tell at times. But I realize it is because as my doctor said I am really reactive to triptans... I have a lot of the side effects you should not have... and I have ignored them for a very long time. I have linked the Maxalt one about, which by the way the list is quite long an interesting... don't have many of the minor side effects. But have put in bolt the severe ones I get. I have not gotten angina that I remember ignoring on Maxalt... I have ignored it in the past, but don't remember ignoring it on Maxalt... I suppose it is possible since I have been on it a while and there have been some occasions when my chest pains have been severe enough I ought to have done something about it but didn't. But it doesn't count unless I say it counts, or more specifically unless an ER does... and since I didn't go, it doesn't count.

Still it seems to me there are some mild ones that shouldn't be a concern. People always mention some in one forum or another to which someone replies... that is just the normal side effect. Like that first flush when they kick in. You get that sort of mild chest constriction, you 'feel' you heart beat and you might feel dizzy. That sort of thing. And it seems to me that some heart rate increase and decrease would be in this category... how much and how long seems to be an issue for me. But the stuff always makes me heart race, so I assumed that had to me normal to some extent... but I really don't know when it comes to that how much is too much anyway because I did consider it to be a normal sort of thing. And palpitations are so common for me I assumed they had to be a normal thing as well... just not the really pounding long lasting ones. I get chest pains are bad, but I always felt that the 'milder' ones were not really that bad... but the angina was bad. So if you got just a short bout of piercing pain... that was nothing. If it was longer, sharper with chest constriction... then lay down. If it was even worse... then stay laying down. If it is angina then it hurts quite a bit more obviously. I've never been sure about the uneven beats... like the fluttering and the skipping and a few times that really, really fast thing. Never really sure how important that is but doesn't seem all that severe does it... but, yes at times, disturbing and other times not so much. And then there is the shortness of breath and wheezing. Well I know the shortness of breath is a side effect but trouble breathing more of an issue. The wheezing according to the list above is a rare severe reaction.... apparently one doctors are not aware of... so I was left to assume and debate it was asthma related and this was extremely freaking frustrating. And also, by the way, I would say one of the worst side effects... but what the hell do I know?

 I have been taken off Axert, Amerge, Imitrex and Cafergot for adverse reactions. I think I have a pattern going on. Except I have a range of adverse reactions and it seems that while at least for triptans they all are the same some triptans are worse for some of the side effects than others. Amerge was particularly bad for breathing, Imitrex particularly bad for chest pains to the point of angina and Axert somewhere between the two. Cafergot was unique in that it Didn't cause breathing problems and that my heart rate really liked to just drop on it consistently... so really, it was quite few in side effects compared to triptans, but still had to uneven heart beats... that it shared with the rest of them.

And maybe I assumed that to some extent this had to be normal because while I was taken off more than one no one say 'Hey, you can never be on triptans again.' They have expressed concern. One neuro was pretty concerned... said my breathing was more important than the migraines. I wasn't too sure of that at the time given I did need to work. I think because of that nothing was quite done about it. One definitely took me off Imitrex and I know she put me on NSAIDs which completely buggered up my intestines and had severe adverse affects, but honestly I can't recall if she completely took me off triptans as I seem to recall or merely switched me... she had been trying to treat the menstrual migraines so the NSAIDs might have been for that. She was the only one who did try to treat the menstrual migraines but I believe she took me off triptans for a bit. Because I was switched to Cafergot temporarily. And then to a different triptan, so they must have been trying to find something I would not react to.

Yet when I posted on the Misfits board... no one really said much at all. Not like yeah... I get these sort of side effects which concern me but I've been told they are normal. Or my heart does this wonky thing. Or I was taken off this one for this or that. Just a few short replies. And for major things.

So clearly I have been putting up with side effects that I really should not have been putting up with on the Maxalt. Because they are the same ones I have been getting with all triptans. Maxalt is one that I have always said is bad on the breathing side of things. The shortness of breath. The chest constriction. Trouble breathing when I take more of it than the minimum or rarely. And wheezing when I take more of it than once a day. My last doctor when I mentioned that it seemed to make my asthma worse said triptans do not affect asthma, so he never took me off it... and never thought the other side effects were a concern. But previous doctors have literally told me to take more asthma medication or take my asthma medication with my triptan... so it is very confusing. I had assumed for a bit that it was the other side effects, like the shortness of breath, chest constriction, irregular heart rates... triggering asthma problems. But wheezing is bloody well listed as a side effect, so clearly I'm having some sort of freaking reaction to it. Needless to say that is precisely what happens... I take more asthma medication to keep up with my use of triptans. My asthma isn't that bad, but I take twice as much of it to keep up with triptan use. And use my inhaler at times to manage symptoms. And... the reason I have personally minimized my use of triptans such that I can never treat even the most acute of migraines with two triptans is because if I do take two triptans... and don't take enough asthma medication... go to bed... I can wake up just not breathing. I just wake up with no air in my lungs, having problems trying to draw air in. Or waking up gasping for air. Or wake up with something very much like an asthma attack. And my asthma is so mild, I've never had an asthma attack. I still can't figure out if my asthma is managed... it should be, considering it was never bad to begin with and it seems to be if I take a boatload of asthma medication and keep the triptans spaced out and minimal. I learn otherwise when I forget my triptan 'rules'.

I used to think it literally was the asthma that caused me to begin to have adverse reactions to triptans... especially of the breathing sort. It just seemed to aggravate the asthma. Made sense to me. From what I knew of asthma. But it seems it just mimics the symptoms a great deal. And keep in mind my asthma is pretty mild in the sense I don't get full blown asthma attacks. And also keep in mind I actually developed asthma while on Imitrex the most adverse reactions I've ever had to a triptan... they sort of blended very well together such that at first, had no idea it was asthma until i was taken off it due to the angina and the laying down and wheezing stuff didn't go away. And doctors who say 'you don't wheeze' from triptans vastly confused me. Because although clearly it is a rare side effect it does happen... I've seen it listed on more than one site for different triptans. I have been told in the past the wheezing was the asthma, but not chest pain, that was the triptan side effect... so I was like what? They both keep happening together with a migraine when I take a triptan? That is a big coincidence. And it seemed it was around that time I seemed to begin to have All these adverse affects to every damn triptan I touched... when I had not before. But it is clearly two different issues. Or long term triptan use when you are allergic to them isn't a good idea. But it is clearly two different issues because I actually was taken off Amerge because it really caused significant breathing issues, no wheezing, just troubles breathing and a heaviness in the chest and a lot of shortness of breath for extended periods of time... prior to being diagnosed with asthma. I had forgotten about that because I had also been getting some extreme nausea... so the pills when I had menstrual migraines where not staying in me long enough to actually work. So I had been switched to... Maxalt.

I have in fact in the past been on I believe Amerge (my first triptan), Axert and Maxalt... with relatively little side effects. Then it seems starting with Amerge that second time and most definitely with everyone after Imitrex have had adverse reactions. So I have had migraines for about fifteen years or so... and for about ten of those years I have been switched around from triptan to triptan because of adverse reactions of the severe sort. Not like any of the side effects I have had have changed... same ones. Just slight variations with different triptans, but same side effects. And in general while there is some concern no one really did much... so really it is not so surprising I have ignored them. Not so surprising I can't determine how severe is severe. And when the Cafergot reaction started I ignored it too, but it was making me so drained, unable to walk around, dizzy... I couldn't function on it... and that was obviously important. And I had a problem with shallow breathing at night and then that weird falling down thing without the actual passing out bit... that sort of was enough is enough of this abortive that sucks as an abortive anyway. I'll go back to my triptan with its numerous side effects thank you. I think there is only one triptan I have not tried. Otherwise I've run out. So it is either rotate back to ones I've been taken off of for adverse reactions or use ones that never worked like zomig.

Nevertheless I do have to wonder what made me so 'reactive' to them. I suppose it simply could be when I started using them regularly. Since that would be around the time my migraines became chronic... so using them more regularly. Instead of episodic. Makes sense I guess. Not much sense because when I was episodic I really don't recall much side effects at all. I would not have had this issue of how severe is severe. Because I only had typical side effects. Maybe a bit with the skipped beats... that really seems to just happen. And I think some palpitations... they do seem to cause that when the triptan 'kicks' in... but if so it would have been short lasting and nothing too extreme.

But whatever. Seems like once a person has all these stupid side effects from every damn triptan they touch someone would look into it a bit further. Not like I have died or anything. But still. The fact my doctor got progressively more alarmed when i told her that she didn't even want me to take the Maxalt at All suggests to me some of these side effects are alarming. At first she said use them less and get an EKG when you feel your heart rate change in any way. Then she really didn't like the idea of me using it at all, but obviously I like the idea a Little since otherwise I just have T3s... so she said, okay, you can rarely but again the EKG. Normally they just switch me to another. So I'm not sure why she wants to have the EKG except to see what sorts of things are occurring. And I guess after seeing on the board how few people mentioned anything... maybe I should do that soon. I kept waffling. I took a Maxalt recently and of course right away I really felt the beat of my heart for the first few hours, with some frequent skipping beats and shortness of breath but my heart rate stayed stable so I was like that doesn't seem that bad at all, but then later on as usually my heart really began pounding and pounding and I got those 'mild' chest pains and shortness of breath... but even that is a very typical thing to happen later in the day. That is in fact the pattern for one triptan. Sometimes there is a heart rate change in there too, sometimes not. It didn't seem Extreme enough to warrant what she was looking for. Maybe if she could have caught it all from start to finish... but the side effects spread themselves out. So I wanted to wait for a batch that was pretty good. But... if no one gets any of these things, then I should just take it, wait for the whatever to start and get it done. She will likely get the uneven beats anyway, since that is always earlier.

I find it so hard to believe no one else gets this crap. Aside from the wheezing, which apparently no one gets. Aside from the angina, which is very rare for me. All the rest of it, can't believe some of it or ranges of it... doesn't occur in others. It astonishes me. Because I still don't believe they are all that severe... I still think it is a matter of degrees. I get these side effects... but I don't know if some of them are that important. Some might be. I just don't know. Would have been nice to have others to compare notes with. Without that... I'm like is it a bad thing?

#Invisble #illness Part Three... the thing that hides itself #invisibleillness

 So I have reflected on how it was in the beginning when my illness was not defined and then when it was labeled that medical stigma that was born from it. How interactions with doctors and that stigma impacted how I conceived of my illness. It really defined how I discussed it to be honest. When it comes to Fibromyalgia I understood I had it. I understood I had to cope with it. But I also understood people would not comprehend it because doctors ignored it so fundamentally and if they did, then clearly people would also not comprehend it. So either I simply did not discuss it or I kept it very vague. 'I have chronic insomnia'. 'I have chronic pain'. Only people that I trusted would I reveal what I actually had because I did not want to deal with the stigma. Partly this due to the fact I am a introverted person and reserved... don't want to talk about personal things I am dealing with if I don't have to and if it does not involve that person in any way. Partly because I understood if the stigma in the medical field was pervasive then I didn't want to experience it in, say, the workplace. I could not do this with migraines however, because migraines have an obvious impact in the workplace and I felt I needed to disclose it immediately and so I did experience the stigma of that.

With Fibromyalgia in the workplace I felt I could compensate in a variety of ways with a desk job such that I felt it was my right to disclose if and when I wanted to, because it did not overly affect things and when it did... I have rights as well, right? But still I felt I was effective. Functional. I has an invisible illness, yes, but I coped and I managed like so many other people with chronic illnesses. This is not always the case with Fibromyalgia and certainly I learned at the earlier stages what jobs I could not do but also how to do the ones I could. But the chronic migraines sort of have a blunt force impact on employment that seriously effects it... stigma comes out because you cannot compensate. You cannot function. You are no longer effective. Your work is effected when you are there working in pain. You miss far too many days. You have way too many short term leaves of absence. Add that too the existing chronic illness... and being sick all the time and other symptoms, and the constant fatigue, memory issues... all the things you were dealing with that are magnified with the acute pain of the migraines and it is hell. And employers... are not fond of employees like that. I can say they don't deal with it well. I can say, neither did I... with my concept of 'pushing through the pain' and feeling guilty for being ill and this idea that if I didn't function or work I was somehow worthless. All that stigma reflected back on me and I consumed it.

So what are some of the things I have heard from people. The general people I have encountered in life.

 "You are lazy."

"You are just depressed."

"At least it is not cancer or fatal"

"You're in pain All the time?"

"I don't understand what Fibromyalgia Is? Like what Causes it?"

"I heard people with Fibromyalgia are just stressed."

"Maybe you should stop taking all those pills. Those are toxic."

"You must not want to get better if you don't want to try...."

"Get out of the house more, exercise more..."

"You Still get those migraines?"

"It is like you're always getting diagnosed with something. That can't be right."

"You have Another doctors appointment?"

"You should try this diet, I heard someone got better on it"

"You should just push through the pain."

"You're letting yourself down, your customers down and your co-workers down."

 "It is like you are always getting sick."

"Maybe if you slept more."

"You never want to go out."


 And I have heard some crazy suggestions. Most of them well-meaning. Some not so much... some sort of a blaming the person sort of deal... like if you only had a perfect lifestyle you would be Cured deal. In the end I get that people need to fill space. They don't know what to say so they say something. So I listen politely, nod, sometimes comment and that is that. Sometimes it is a little hurtful, or at least when I was younger it was, but these days I have heard it all and it rolls right off me. Except when it is cruel and makes me feel guilty for being ill... that gets to me because I have so much of my own guilt that sometimes I agree... and then later I feel angry they made me feel like that.
The Facade 

In the end though some people doubt our pain. Because of this stoic facade I mentioned that we have developed. It develops naturally. Our facades. We create one with doctors in face of their stigma. We create one with family to protect them from seeing our pain. We create one in the workplace in order for customer to not see our pain and to pretend to function. It is so well-formed chronic pain is the invisible disease that conceals itself. The facade is something that is both to protect other people and for us to be functional... and yet... and yet it masks the pain, a chronic pain people have trouble grasping to begin with. If you hide all the features people use to 'see' someones' suffering and physical or emotional pain it literally makes it harder to comprehend and grasp. However, not like we show it. Certainly not all the time. Then we are exaggerating. Complaining. Trying to get attention. And it is unrealistic to express pain that is constant... certainly the baseline pain we then define as our normal and not even worthy of comment.

With chronic pain... your pain scale becomes skewed... it just happens. Pain has many flavors that most people never have to 'appreciate'. Fibromyalgia has a baseline pain that is always there and then areas that hurt more and then flare ups that hurt like a bitch... hard to give a 'number' to it. But to the baseline pain... we are likely incline to say 5 because it is in the middle, and it isn't low and it isn't high, but it is a constant thing... but so constant we consider it to be normal. Someone who never has pain would give it a higher number... of which I am not even sure what that would be to be honest. I suppose it depends on both the pain tolerance of that person and the baseline of the person with FM. But you begin to see the problem. With migraines it is said every migraine, every one, is between a 7-9 on the pain scale... but someone with episodic migraines is less inclined to be walking around, working, having a conversation... that someone with chronic migraines has to do at the 7 level... and 7 by the way is pretty damn high. 7 is not a pleasant level for anyone to be at. Obviously we are compromised to some extent at a 7, but we are forced to compensate and function on a basic level anyway... it isn't fun or even realistic to be honest, but it is a reality.

Which is what makes chronic pain a language unto itself. We get each other. We have this sort of repressed stoic, calmness under which hides a great deal of torment. We have so many descriptors for our pain. Shades on the pain scale. Many pain scales. We write poetry about our illness. We do fantastic works of art to express our illness and pain. We try to use language to the fullest extent and go beyond language to communicate all the nuances of this suffering. That Facade that we master so well to mask our pain so that we can function with some level in society without being obvious we are in a great deal of pain. It is a pretty necessary thing. For pretty obvious reasons.... But it makes it a pretty horrific self-concealing invisible illness to have. But... you will often find we do not complain much. We do not express our pain much in reality, and what we do express, is not nearly what is actually there... what is actually there is constant, what is actually there can be terrifyingly intense and that is not something that can be expressed often. We can be pale, we can be grim, we can be green around the gills, we might tremble, or shake... but words will fail us then, will be hidden, concealed behind this false facade.

Language Fails Us

That... is very normal. It just is a normal occurrence with chronic pain. I've been told by doctors I am very stoic. I wonder what they expect? Screaming? Crying? Don't they realize that makes the pain worse? I don't know. But whatever the case may be... they are trained like everyone else to know pain behaviors and are confounded when they don't see them. They more than most ought to know better. As I had mentioned... they are partly the ones that teach us not to make a fuss about pain, aren't they? And it is a problem that pain cannot be seen. It makes people doubt it. So we have a real problem with that overall. That because we learn to mask our pain... for others... they doubt our pain. But the stigma doctors create seems to bring this element of... your very illness is an embarrassment to be hidden. The pain is to be endured, suffering to be masked. That your very illness is something that even your doctors are not sure about and will not treat. If it is brought up you cannot help feel a little embarrassed about it. Only made worse if people sympathize.

So it is frustrating that we develop such a skill to mask our suffering and this very skill inhibits other peoples' ability to see our suffering. So when we state how we feel... and when we do we feel like we must be complaining. Surely we must be saying things 'too often'. We must talk about this way too much... and it is hard not to when everything you do is to help you feel better, get better, create a new habit to get better. Or it is a significantly bad day. So you say 'Today is a significantly bad day'... 'wow thos migraine auras sparkle today'... 'this is a bad word day'... 'this is a bad pain day'... whatever you might say, however you might phrase, whoever you might say it to, whatever message you might be trying to get across... it is never quite understood. That when you mention something it is Significant. That is is more than usual and usual is something apparently no one quite grasps. So if they cannot grasp what you must deal with always, how can they grasp More Than. Such that even when you are trying to convey This is Seriously Bad or Desperately Bad... language fails us. I wonder sometimes if it fails us because we are in chronic pain and people do not understand when we mean More Than or if our facade is that complete that they cannot see when the suffering is that Large that it is about to consume us. It seems they only understand suffering when our facade fails us because people assume pain must come with emotional suffering... not saying they are not linked very closely, only that we hide a great deal of that and they are not Necessarily linked. People do not comprehend laughter and smiling combined with physical pain. It confuses them.

Nevertheless i find it rather easy to explain my actual disease to people these days. 'It feels like having the flu all the time'. 'It feels like being hit by a truck'. Those I used to use. Now I get down right educational. I have gotten pretty creative to describe migraine auras, the vertigo but the migraines... but again with the migraines themselves I use facts and education. That is really the tip of the iceberg stuff. I'm just saying that is what it feels like physically. Not what if feels like to have this all the time, but that is perhaps more than is needed in most cases.

Stigma

I understood... some pain is considered 'real' and some isn't. If people can wrap their head around it... it is real to them. But... when pain is chronic... it is a problem. When it comes to people and chronic illness stigma ... I find it is when my illness is a problem to them. Which means, like my second post, in the medical field where my illness was a problem because it was either unable to be cured or they did not believe in it. A problem.

It is also a problem in the workplace. Not all workplaces by any means. I have worked for many places and I have had FM for all of them and it was never a problem for my employer. For me, yes, far too painful but I worked through it and hard and they certainly had no issue with me, often wanting to keep me on through university, even though I was not capable of that. Also had a couple employers after university who were very good about the FM and migraines. Great managers. One who was completely unwilling to compromise and led me to a different job. And another who had a great deal of stigma about chronic migraines, so I rather mentioned very little about FM during that job since I didn't want to add to the stigma. Stigma comes on slowly though when you become a Problem to the employer. When you miss too much work. When you have leave of absences. When they don't know how to 'fix' it. It comes out in a variety of poorly phrased comments... the same sort you might get from others about your illness. Why can't you get better? Why don't you try this? Then in veiled threats. Not so veiled threats. Demotions. Guilt trips. Many ways. I think in many ways many of us put up with this sort of thing because often we don't see this as a problem at first. Maybe just helpful advice? Maybe they are sympathizing with us? Maybe they are trying to motivate us? And sometimes we feel so guilty that we cannot just power through the pain that we feel guilty we are ill, so it is our fault... so we should 'try harder', right? I cannot count how many of those 'conversations' made me feel so bad about myself I was in tears, felt so horrible, so guilty, so trapped by the fact I could not make myself better, could not force myself to just Be better, but had to somehow get through the pain to function better. I admit those words had the power to hurt me, and over time, they affected me mentally, emotionally... in profound ways, until my self-esteem diminished, until my self-worth diminished. I regret putting up with workplace stigma... but I didn't realize I had the right not to... and I regret more letting those words affect me.

Our illness may be seen as a problem in many scenarios and we may come across stigma in many places. These people have to be handled differently than other people. They are not out for our best interests... but there own. To resolve the problem they see. They need to be educated to the facts. The problem may in fact be one that can be resolved by understanding an illness may need certain accommodations or may need certain adjustments in certain situations but that in life we do these sorts of things all the time and we want to function, so are more than willing to find ways to do so better. Nevertheless people like this need to be informed with blunt fact. At times in a work situation you have to go around them to an HR department if they refuse to comprehend reality.

Revealing and concealing

With a chronic illness we are trying to function all the time. What people grasp or understand is the tip of the iceberg and the rest is hidden from sight under our facade... as we try to function. However I can comprehend why people do not understand the battle. It is a very complex experience that at times we struggle to cope with and understand ourselves. Explaining the depth of it is pretty much impossible... we can only explain fragments of it. And over time people who know us well begin to understand those fragments as a whole. I cannot explain to someone I care about how deeply difficult the pain is to bear because while that is very true at times, I don't want it to be true and I don't want them to worry... so I only present to them what I want them to see and at times what I want to believe. Clearly people I care about get to see more depth than anyone else so I cannot hide as well as I can with the average person. It is remarkably easy to mask your pain in front of people who know you casually... and I am sometimes amazed at that, but while when I was younger I wondered 'why can't people understand my pain? Why can't they see it?' I now know it really is easy to conceal and we do it so naturally and people do not take that keen of an interest to see the markers of it.

While it used to make me feel very isolated, these days there are much more online support groups so I am very aware I am not alone and the fact my disability is invisible is not such a burden.  Do I need every person I encounter to grasp every aspect of my disability? No. Not in the least. Only a select few do I need to understand my limitations and others to understand more depth.

In the end it is up to me how much I reveal and how much I conceal. We encounter people all the time in our lives. Some mean far more to us than others. Some I never revealed a thing about my health to them. Some I revealed fragments because they asked... because they were curious and I used those opportunities to educate them on what my disease is about. Others I wanted them to understand the limitations and how I got around them. Others I wanted them to comprehend the struggle. Just like we wear a different part of our personality with our friends, than we do at work and with family... so it is I wear my facade of wellbeng all the time to conceal my illness for different reasons but reveal aspects of it for different people in different ways.

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...