Thursday, April 24, 2014

Owning words and using words #PowerfulWords

I think we have all seen inspirational posters like this and there is nothing really wrong with them. They serve a very valid purpose but it just reminded me of a post about language I wanted to make because I see this sort of thing so often.

However, we know that being chronically ill does not make one intrinsically courageous. Nor does losing the battle make one a coward. I had someone get quite upset I had posted a link to an article because it used 'brave' in the title in reference to children fighting rare diseases and of course the journalist was simply trying to get more people to click on the link but she was offended I would have posted it at all because we are not intrinsically brave because we are ill. Of course we are not 'brave' or 'courageous' just because we are ill. Nor do we seem to have this inner core of strength always referenced like pain makes us somehow 'stronger'. Yeah, no. Hell, people see us as being inspiration by our mere existence. Yeah, that is me being all inspirational by surviving this pain. Yeah, no. I was posting it because of content not because of the semantics of the word in the title though. However, it does point out how words are used when it comes to chronically ill people. I think many of us have been told we are courageous or brave and we just want to say 'no, this is just a fact of life. This is just the way it is. And you will likely find that out too some day.' We do not gain positive and negative attributes simply because of our disability. Like 'poof' we are disabled and now we are 'lazy' or 'courageous' or both? And we know it is the stigma of the outside world that inflicts these words on us.

"Your illness does not define you. Your strength and courage does."
- Because we are seen to have this insane inner strength and of course, again, with the awesome courage. Makes me feel so awesome. But my illness is in fact a damn hard fact in my life. One that doesn't make me feel very strong at all. Except maybe when I am forced to do things, then I feel like I have insane pain tolerance. Otherwise I feel tired and weak. And insufficient. But you read this and you feel a little better. Which is the point. Here the 'intent' is to be motivational.

Other people applying words to us is different than when We own those words ourselves. I sometimes think inspirational posters are meant to help convince us they are true rather than being true. We fight a very hard battle every day and it is exceptionally draining. If we come across this poster and it makes us feel that yes, we are courageous and strong because we endure this pain and keep on going then that is a good thing. We take on a label because we want to feel that it is true. And I think at times we should take on certain words and own them to take on that strength they give us. Why not? What you tell yourself, positively label wise, to get through the day is never a bad thing. We have enough negative words for ourselves. So keep on being inspirational. Own the positive words.

I have a little more trouble with other terms. I have seen in online communities that in the chronic illness world 'we' can use the word 'cripple' but 'other' people cannot. In fact, they outright attack other people that dare to use the word cripple inappropriately ('I am so crippled today after spraining my ankle'). Which, yes, is rather an exaggerated use of the term. Wow, people exaggerate their pain for dramatic effect? How dare they. Just like we are not intrinsically 'courageous' because we are ill, someone isn't crippled from a sprained ankle. However, I don't think it is really all that appropriate to verbally attack some poor kid for his use of a word. Language is a flexible thing and if someone wants to exaggerate and be dramatic... is that really a crime? No, it really isn't. It is someone being descriptive and, yes, rather dramatic. Nothing to get all riled up about. Then I wonder to myself about taking ownership of the term to begin with. And I have used it myself. Because I feel crippled. But it is such a negative term. While I feel like sometimes taking ownership of a negative term we can turn it into something else I am not entirely sure it works. The stigma we deal with so often it quite broad and covers so many areas that language is important. How we use language is important. If we are going to attack others for how they use language maybe we should consider how we ourselves use language. If the word disability and disabled comes with negative connotations, which it does, then think about the word crippled. I would prefer to use the term disabled and try to removed the stigma from that word than use the term crippled. Or even use the term incapacitated by pain, than crippled. Yet it is semantics and word choice. We are as free to use the term as anyone else, just more appropriately so. Removing the stigma from terms is a far more difficult battle. Each word brings to mind certain ideas and you want to use words that have the least negative connotations and then change those. 'Disability' is more acceptable to use because it is broad... it covers physical, mental, invisible, visible and so forth. It isn't seen completely as a negative concept and people who raise awareness can address the negative stigma.

Like the difference between mental disorder and crazy. We can take ownership of the word crazy, and make inside jokes... but should we? Maybe the stigma is still too intense for that to even be possible. We want to say we have a mental disorder, accept it and can take ownership of it... but the negativity that comes with the term crazy is such that maybe the term cannot even be used around those of us with mental disorders. Maybe we should refer to our specific conditions when we use our inside humor instead. Maybe we should avoid these terms because other people still are not capable of seeing the stigma there is out there. In fact with mental disorders I find that most people are not aware of the profound stigma in medical fields and in society. Not to say there is not stigma with all invisible disabilities, just that with mental disorders, it is pretty pervasive.

In the end, well, language is powerful. Stigma is both seen in positive use of words and negative. People use the words to put forth their stigma of how they perceive our conditions. We use words because we own our condition. Either way, they have power. I suppose we should choose them wisely.

Monday, April 21, 2014

Stewart Tepper, MD : Neurology Reviews

Stewart Tepper, MD : Neurology Reviews (Video)

"Headache Cooperative of New England

Stewart Tepper, MD
At the 24th Annual Meeting of the
Headache Cooperative of New England, Stewart Tepper, MD, discusses the
latest updates on research into neuromodulation treatment strategies for
migraine and cluster headache."

Video goes over: Discussing TMS stimulation for migraines with aura and external device. And other external devices. As well for neuromodulation for clusterheadaches which is held over the cheek and triggered to abort or prevent a attack. And vagal nerve stimulator for migraines and cluster headaches, for treatment and preventatives.

Thursday, April 17, 2014

#Fibromyalgia Awareness Day May 12th

Thunderclap send out a message with thousands of others via Twitter, Facebook or Tumbler on May 12th through Thunderclap.

Facebook Page FM/CFS May 12th Awareness keep in touch with events through this facebook page about fibromyalgia and CFS/ME

National Fibromyalgia and Chronic Pain Association site"Events for National Fibromyalgia Awareness Day, officially May 12th, occur throughout the month of May.  The 2014 theme - "C.A.R.E. & Make Fibromyalgia Visible" - encourages people to Contribute, Advocate, participate in Research, and Educate others about fibromyalgia.  People with FM and their loved ones host community events - picnics, dinners, exhibit tables, walks, Zumbathons, and other creative ways - to help other people know about this invisible illness.  Hearing people say, "But you look so good," underscores the importance of speaking up about chronic pain illnesses."

Fibromodem: Events Internationally  Check out posting for events around the world

I hope more things will come to light as we get closer. Until then!


Sunday, April 13, 2014

That photophobia and peristent migraine aura

I went and had my eyes checked out today and they are healthy and my prescription has changed little. I pretty much knew that but wanted to get some new specs and it has been four years since I've had them checked out. Never can be too careful when you have visual snow and persistent migraine auras because hard to say what 'normal' vision really is. So best to make sure it is all good. I also lost my pink tinted indoor specs, so needed to get them replaced. They help with my indoor photophobia a bit. And I wanted to get some prescription sunglasses. While my prescription is very mild and I don't really need to wear glasses except if I am driving at night or working on a computer it was suggested it may help with migraines. And you never know. So I figured maybe I should a nice pair of good coverage sunglasses with the prescription in them.

Sort have a thing for sunglasses if you have photophobia. All sorts of shades and tints.

I have pretty extreme photophobia. While I have a migraine, well, even a sliver of light can be painful to the extreme but the fact is light is just painful all the time. People with migraines can experience photophobia outside of a migraine attack so I am not unusual in this, but it is also common to have it with fibromyalgia and with visual snow. So I am really not usual in this. It just means I never leave the house without sunglasses and those rose tinted specs do make a difference. And my house is like a cave.

Now aside form the photophobia light is a trigger as well. Light is said to aggravate a migraine because of that damn photophobia for sure but many of us agree that it can also be a trigger. Some researchers believe we are already getting a migraine and it is not a trigger itself. I disagree with this because when I leave the house into that damn ever bright sun I will get a migraine quickly... very quickly. Yes, it will make an existing one worse, but it will also Give me one within about twenty minutes of exposure if I didn't have one at all.

Another reason I would say it is a trigger is because I can say beyond a reasonable doubt that sunlight and bright lights alone will trigger a migraine aura. As in a persistent migraine aura event and not a migraine itself, within seconds of being outside without sunglasses on. Sometimes I take my sunglasses off to see how bright the sparkles are in the sky (that would be blue field entopic phenomena that looks like dancing particles of white light. A normal phenomena many people can see somewhat sometimes, but people with visual snow see all the time very vibrantly for unknown reasons)... and when I do look at the sparkles and amazed at how bright they are within moments I will get a big blob of distortion in the middle of my vision that turns into a specular vortex. Happens if I am outside for moments without glasses. Happens when I wear my lighter sunglasses. It is just so bright it instantly triggers this aura, or this and a line warping effect, or blotches of light. Either way, definitely triggered by light alone. Faster without sunglasses but I notice with sunglasses it still happens but usually delayed by about twenty minutes of driving.

Photophobia is pretty hard to manage when it is constant. I will say that. But I have no control over the auras. However, it does seem like I lessen them by reducing the sunlight I get.

Saturday, April 12, 2014

Article: What #suffering does

What a wonderful article worth reading in its entirely...  but I had to post this portion here. I know with chronic pain we know a great deal about suffering. About pain that leads to physical and emotional suffering. This changes us on many levels. It changes us in different ways at different times. And we think a lot about that. We reflect on those changes. Often seeing the negative. Often seeing the limits. However, the changes themselves reflect this strong core within us often. And what comes out of all this can be some powerful insights into ourselves and the world. That is not to say we are better for it. No, not better. But definitely changed. Definitely different.

What suffering does

First, suffering drags you deeper into yourself. The theologian Paul Tillich wrote that people who endure suffering are taken beneath the routines of life and find they are not who they believed themselves to be. The agony involved in, say, composing a great piece of music or the grief of having lost a loved one smashes through what they thought was the bottom floor of their personality, revealing an area below, and then it smashes through that floor revealing another area.
Then, suffering gives people a more accurate sense of their own limitations, what they can control and cannot control. When people are thrust down into these deeper zones, they are forced to confront the fact they can’t determine what goes on there. Try as they might, they just can’t tell themselves to stop feeling pain, or to stop missing the one who has died or gone. And even when tranquillity begins to come back, or in those moments when grief eases, it is not clear where the relief comes from. The healing process, too, feels as though it’s part of some natural or divine process beyond individual control.
People in this circumstance often have the sense that they are swept up in some larger providence. Abraham Lincoln suffered through the pain of conducting a civil war, and he came out of that with the Second Inaugural. He emerged with this sense that there were deep currents of agony and redemption sweeping not just through him but through the nation as a whole, and that he was just an instrument for transcendent tasks.
It’s at this point that people in the midst of difficulty begin to feel a call. They are not masters of the situation, but neither are they helpless. They can’t determine the course of their pain, but they can participate in responding to it. They often feel an overwhelming moral responsibility to respond well to it. People who seek this proper rejoinder to ordeal sense that they are at a deeper level than the level of happiness and individual utility. They don’t say, “Well, I’m feeling a lot of pain over the loss of my child. I should try to balance my hedonic account by going to a lot of parties and whooping it up.”
The right response to this sort of pain is not pleasure. It’s holiness. I don’t even mean that in a purely religious sense. It means seeing life as a moral drama, placing the hard experiences in a moral context and trying to redeem something bad by turning it into something sacred. Parents who’ve lost a child start foundations. Lincoln sacrificed himself for the Union. Prisoners in the concentration camp with psychologist Viktor Frankl rededicated themselves to living up to the hopes and expectations of their loved ones, even though those loved ones might themselves already be dead.
Recovering from suffering is not like recovering from a disease. Many people don’t come out healed; they come out different. They crash through the logic of individual utility and behave paradoxically. Instead of recoiling from the sorts of loving commitments that almost always involve suffering, they throw themselves more deeply into them. Even while experiencing the worst and most lacerating consequences, some people double down on vulnerability. They hurl themselves deeper and gratefully into their art, loved ones and commitments.
The suffering involved in their tasks becomes a fearful gift and very different than that equal and other gift, happiness, conventionally defined.

Friday, April 11, 2014

“I laugh because I must not cry, that is all, that is all. ”

 “I laugh because I must not cry, that is all, that is all. ”
― Abraham Lincoln

Of all the famous quotes that one is rather unexpected. However, I often have said the one coping mechanism I developed to deal with chronic pain long ago was humor. It wasn't like I didn't have a sense of humor. It was just that I was a very sarcastic, cynical young person. I think maybe because I was aware of my limitations when I was young and I didn't like that fact. Nor did I like feeling tired and in pain all the time or how that affected me. It did affect how I viewed the world in general and how I looked at my options in life. How I looked at those options. I took things too seriously. I didn't let myself laugh at the simple things or act foolish for the fun of it. And I let the pain be a heavy burden on my shoulders.Which I thought about. I am a very introspective person. I think about a lot of things. Reflect on them deeply. Which is fine. But pain is one of those things that should never be reflected on for significant amounts of time. Not if you also have a melancholy type personality where thoughts begin to turn downhill, twist and turn against you with the pain. I knew I had to break that habitual thought pattern. I had read about it and it said for every negative thought you needed to replace it with three positive ones to retrain your brain. Because your brain is a broken record, it plays what it has been taught. But I wasn't one for fluffy positive reinforcement. I don't lie to myself very well. Fluffy positive thoughts are false in all their fluffiness. Pain is a fact. Can't lie about that. But you can dim the truth a little. Be a little less brutally honest with yourself. I found ways to trick myself about the reality I was in. Any brutally harsh negative thing I said I would then tell myself something more... realistic. The thing about depression isn't that it lies per sa, it is that it is always the darkest scenario of our existence, a shard of our reality that is harsh and brutal, unvarnished and cruel. But it isn't the whole truth or even realistic. And the reason we have a hard time thinking through it is because there are some very well thought out rational points in it that are very truthful. So it is a mistake to go that way. No, you have to look for the subtle other truths that are less harsh to add in there. Pain and depression are brutal because pain is brutal. Of course it is. Of course pain without end is brutal. Of course reflecting on that is brutal. So I would say well I cannot do this or that, but I can still think... I can still go to class and do very well. I can still achieve my goals. And small things like, I may be in pain and moving slowly but it is a beautiful day and I aced that essay.

But beyond everything the most powerful thing was just letting myself be goofy. Laughing at silly things, dancing in silly ways because I felt like it and it makes people laugh, which makes me laugh. Making jokes about my illness is very common. My horrible memory. My word errors. My lack of balance. And laughter... eased my burden. I could just let myself be it seemed. And eventually it became part of who I was. Then it became part of my facade, because it was better to hide the pain with laughter than to feel it more intensely.

And I knew the day I could not cope anymore precisely. While I have always known laughter has been vital in my coping. And I have always known it has been part of my facade that hides the level of pain I feel. I knew when my level of pain began to exceed my coping when I would be laughing hard at some joke... a good hearty laugh and I would at the very same time feel deep despair and have to choke back tears. I would have to stop laughing because I knew I was close to crying. You see laughter is a powerful emotion and simmering beneath the surface of me, all the time, was the despair from all the uncontrolled pain I could not manage. That I knew intuitively I could not manage. That I was having extreme problems with and doing my damndest to pretend I could function through; more often than not, failing. But that had been the clearest sign to me, before I ever admitted it. Because it is true. I laugh because I must not cry. I laugh because it was how I lifted my spirits. How I masked the pain. How I chose to distract myself from the pain. How I chose to distract others from my pain. And laughter is a very good medicine. Very good for the brain. But I knew it was failing when other emotions wanted to burst out instead.

Monday, April 7, 2014

What I think about #pain and #coping

In basic terms...

You see when you have chronic pain there may be a point in your life when the pain is moderate with intermittent points of severe and acute. In which case you find that you are coping well. You can work and maybe even have a career. Maybe not the job or career you want to have but you can do it. You can have a life and by that I mean a generally good quality of life that permits some social activity, some activity with co-workers, friends, family and loved ones. Some hobbies and pleasurable leisure activities. Within moderation and within limitations. Never what you could have, never what you want to have. But some. Enough to allow a certain level of quality of life. Enough that you have a good capacity to cope. Enough that you know you are coping.

Then a tipping point.

You may not even know right away that you have reached it. You certainly will try to deny it. Because you are coping, right?

At this stage of the game the pain is always severe and intermittently acute. Or more than that. You are not coping. You are barely pretending to cope. Yet likely you pretend to in order to hold onto your job, at least initially. In order to do so there goes all aspects of your quality of life. No social life. No energy or pain tolerance for interactions outside of what is necessary. This is survival mode. Not coping.

It is not likely anyone can maintain this for long. Although most of us struggle to do so for some time. Which is why so many other aspects of our quality of life are eradicated first. And all that remains are those core necessities. However, even those suffer. Finally we struggle to work. And the stress of maintaining that and coming to the realization we cannot can have a massive impact on us.

You think you can handle it, until one day you cannot. Then what do you do? You have to figure out how to get a handle on it again. And pain management unfortunately may not be an option. While I would love to have a way to treat my pain it is not something I can do. I have to tolerate it. Endure it. And that means in order to not be in survival mode where I wasn't coping with it and often suicidal I had to consider my work situation. I could not consider any other aspect of my life. It was stripped bare already. I already had all the coping strategies one would expect from someone who had chronic pain for a very long duration. But the pain had exceeded them. Unless I get treatment to help with the pain then I am left in this severe/acute level on a daily basis that doesn't permit any options. I explore anything that can help reduce the pain or suffering. And will continue to do so because anything can help with new coping strategies. But when the pain level remains as it is level of functionality remains low. And we sometimes have to acknowledge this.

It has been such a long time since my pain has been in that moderate range that it is really naive of me to believe it will be there again. I remember that time rather fondly really. There was pain. There was limitations. But I prevailed over them. I succeeded. I felt like I had some control over my chronic illness because while there was limitations I could work within them and still achieve goals. Then one day I hit a wall and I just never did recover from hitting that wall. It was just a slow decline from there and no effective treatment. I feel like I have just been really struggling to hold onto shreds of my existence from there on... and really failing in that. But I survived for a long time by making compromises and slicing pieces off and calling that coping. It isn't. I had been coping. Then I wasn't. From that point on it was just denial. However, in this world you are expected to just be so stoic about it all. You are expected to work with the pain. I don't know how they think you can have a life and do that. Maybe they don't care. In the end, when the straws of pain break the camels back you don't care either because then you don't even care about surviving anymore. The horror of this story is that I found when I struggled with chronic pain my doctor did not have my back. When I said this pain is a massive problem my doctor did not have my back. When I went of leaves of absence due to the pain my doctor was more interested in getting me back to work than treating my pain. In the end I realized people are more interested in the appearance of functionality than actual suffering. It is an actual horror story really. We can go from coping to not coping and no one bats an eye. Other than those that love us and for them it is equally painful. It seems like we are expected to suffer by others. Like temporary pain earns you recovery but chronic pain earns you a lifetime of punishment. We have to fight for our rights. For any treatment. For anyone to comprehend that pain is a disability. That pain has a profound impact. And I can't even say that we can win that battle because any treatment is difficult and often minimal. And disability is a fight. And not working? Is just financial instability and guilt. However, we all must know the signs between coping and not coping. Because not coping comes with a heavy price and can be infinitely dangerous. I would much prefer some financial instability and barely coping to not coping.

Friday, April 4, 2014

I need a #migrain #kicker tonight

I have had a migraine since yesterday that has been acute all of today. Because when I went to bed with that nasty migraine not only did I have the pain to deal with I got vertigo lying down.


You get the point. On a rollercoaster ride I could not get off. It began to make me feel rather ill actually. More than rather. I needed to get up. Staggered about for a bit. Tried sleeping again. Same thing. So I got up and did some writing on the computer for a few hours. Eventually took a short hour nap on the couch.

A nap is not enough to kill a migraine like this. Sleep deprivation means migraine all day. Brutal migraine all day. Of course my tripan did nothing at that point.

However I had an appointment in the city. So the long drive did kick in the vertigo more and more nausea. So there was that. Now there vertigo is here to stay.

Still have the pain. And massively bad neck pain, jaw pain and facial pain as well.

So how does on get to sleep like this? With a migraine kicker that is how. My sleeping pill fails at a migraine that is a high 8 and a 9. Usually I don't do anything about it because I hope that eventually I will get to sleep sometime in the range of the dawn hours and get some sleep. If not then it is a real bad day. The next day I may take a kicker... something that works with a sleeping pill to give it a kick. Something like trazadone which is often given to help people sleep but never did anything for me, by itself, but with a sleeping pill works much better. I have something else I forget the name of that is off-label for sleep. It works well with the sleeping pill but I am an utter zombie the next day... but I sleep. And I do not wake up with the migraine. Which means kicking a potential status migraine in the butt. Usually. I don't take it all the time because I believe it would work less if I did and also I seriously cannot function the next day when I do, but it serves its purpose for breaking a migraine caused by sleep deprivation.

I have nothing else I can try but to sleep and hope I shake the migraine. I already tried a triptan and I cannot take another. I took painkillers yesterday so cannot take them today, and one painkiller will not cut it for this level of pain.