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Showing posts from 2015

'Out of my head' documentary and The #MigraineProject.

OUT OF MY HEAD, (aka THE MIGRAINE PROJECT) is a documentary film that is in the works right now. The Association of Migraine Disorders has agree to match donations for the project dollar for dollar! People who choose to support this excellent migraine awareness documentary will get double the impact with these matched funds. All of the donations are tax deductible.

If you would like to donate or learn more about the project please click HERE
There is a clip on the site of an in-progress video

Here is the info about the project from there site:
Out of My Head by The Migraine Project is a feature documentary film in the making. We are pursuing the history and mystery of Migraine, and its remarkable place in the human condition.Migraine is a devastating but fascinating neurological condition with a compelling story to tell. Alice in Wonderland, Vincent Van Gogh, LSD and Elvis all figure into its colorful history Our film will take a look at the entertaining details, and the big que…

Another day

You got though another day. You got this.

The #Fibro #Flare up

Fibromyalgia is a chronic syndrome defined by widespread muscle pain, fatigue, sleep dysfunction and cognitive dysfunction. Fibromyalgia pain dysfunction involves an increased sensitivity to pain known as hyperalgesia. People with Fibromyalgia can experience what are referred to as ‘flares’ where their symptoms get more severe.
A survey in Pain Medicine recently looked into the nature of flares to ask people with Fibromyalgia the nature of these flares. They asked opened ended questions to determined how they perceived the fibromyalgia
flares, the triggers of them and possible alleviating factors for them. They were asked how these flare ups are different from their baseline symptoms and how they cope with them. There were 44 participants in the survey.

Primary causes of flares:
• stress
• overdoing it
• poor sleep
• weather changes
Primary symptoms of a flare included:
• flu-life body aches with exhaustion
• pain
• fatigue
Primary treatments were:
• medical treatments (medicati…

Considering your #NewYear's #Resolution. Things to Consider.

Hopes and dreams of the new year

This year is coming to a close. It was a rough one for me. Not going to lie, glad it is going to be done with but it left a mark on me. Hard for it not to really. It was a bad year of pain, grieving and suicidal tendencies.

But we can discard that year and think about what hope we have for the new year. So what are your hopes for the new year?

I hope I can manage my depression.

I hope I can develop an exercise routine.

I hope I maintain my gratitude journal and my meditation schedule.

For those two hopes are for pain management and I hope pain management helps me.

I hope to maintain with the pain. To find some sort of balance. Where working is not the torment that it is currently.

What are your dreams for the next year? What is it you want to do? What are you passionate about? What do you want to achieve? Travel to? Experience?

I have small dreams. I want to continue writing here. I want to continue self-publishing only I wish my marketing would improve to get the word out on my book…

My #ChronicMigraine experience in a few words

May the odd ever be in your favour for not getting a migraine. I got a migraine. And the same the next day and the next day. Ad infinitum. The odds are never in my favour.

Fizzle me pickles stop. I mean... pass me a pop.

I ordered the one with a career I am passionate about. You know the one I went to university for? That one. To make enough to take interesting holidays and invest in my future. Got this instead. Thanks roll of the genetic dice.

That person person with less pain who didn't have depression. Whose brain was not compromised on a regular basis and whose life was going according to plan. Who had friends and good times and was happy.

Because depression does not make this easier.

Doesn't help that people cannot see my pain either. Or that my smile seems to just make it disappear to others.

Or that people do not get it even when you explain it and why bother explaining when they do not get it?

What to do about Stress

So we are stressed. What are the typical things recommended for all this damned stress?

"Cortisol, a hormone produced by the adrenal glands, is sometimes called the 'stress hormone' as it is activated in reaction to stress. Our study shows that a small hippocampal volume is associated with higher cortisol levels, which lead to increased vulnerability to pain and could increase the risk of developing pain chronicity," explained ├ętienne Vachon-Presseau.

As Dr. Pierre Rainville described, "Our research sheds more light on the neurobiological mechanisms of this important relationship between stress and pain. Whether the result of an accident, illness or surgery, pain is often associated with high levels of stress Our findings are useful in that they open up avenues for people who suffer from pain to find treatments that may decrease its impact and perhaps even prevent chronicity. To complement their medical treatment, pain sufferers can also work on the…

Stress is seriously stressing me out

You know dealing with chronic pain, fatigue, stress, chronic illness and depression is a raw deal. It is sort of this daily battle of crap just from getting out of bed. The first battle: getting out of bed. The next battle trying to pretend it isn't in fact a battle.

This is our every day existence. We have our baseline pain days. Our moderate pain days. And our horrifically bad pain days. We moderate our activities. We have defined limits. We feel like we never get anything done. We feel guilty about what we cannot do. We feel like our brains are balls of cotton balls and just all hazed out. We fumble along just trying to manage things and trying to not think about the pain, that is very much top of mind. The pain eats at our concentration and memory capacity. We feel so very drained of energy from this constant struggle to get our bodies to do things. The fight with chronic pain leaves us with no motivation and no sense of accomplishment.

Yet we get used to the status quo. Or a…

Fighting with my moods

The pain levels this month have been quite high. With hormonal migraine stretches and status migraine stretches and just plain high pain days, with fibro flares. And in waltzes the darker emotions. Leading to those thoughts that are very much darker, emptier and simpler.

They say to me how is it even possible you can return to work Like This? When you can barely get through the day as it is? And I think, I don't have an answer for that. Because getting through that pain level is extremely hard for me mentally and emotionally. I have to monitor my thoughts and emotions. Make sure everything is under control. And even at my best I think will this last forever? When will it end? Can I hold on that long? I must, I must, I must.

But I know if I was working there would be dark suicidal ideation saying to me you can't work, you can't not work. What is this madness? What is this horrific game you play? Why do you have to torment yourself and who makes these rules? That you have …

drugged driving

Migraines and driving are a topic all their own, especially when you have chronic migraines. Medications though is something we all have to deal with. We often feel they do not compromise us when we get used to them, but do they? I know when I take a triptan that I feel dopey and excessively tired. I have difficulty thinking. So much so I often hesitate to even take them at work because I have problems working after I take them. But the migraine is worse... so there you go. Driving like that? Not great.

“This limits their exposure to verbal warnings, and increases the likelihood of people having to rely on labels.”
She said more research was needed to understand the effects of medication, as individual responses often varied.
“Some medications can cause a variety of impairments including drowsiness, increased reaction time, loss of mental concentration, shakiness and affect coordination and these all make it unsafe to drive, cycle or use machinery.
“Worse still, impairment can be comp…

That smile

The chronic pain facade is always an interesting topic for me because it is instinctual. We all rapidly develop it to some degree and generally for the same reasons.

Partly to get through the work day if we work in a situation where we have to mask our pain with a smile... for the sake of customers or for appearances.

We often mask our pain from loved ones, to a degree, because we don't want them to worry. However, this is only moderately effective because they are the most likely to notice our pain and be effected by it in some way.

We mask out pain because we ourselves do not want to feel the intensity of it and by hiding it we do not have to communicate how difficult it is to handle.

We mask it because people do not understand it and we tire of explaining it.

And we mask it because our pain makes people distinctly uncomfortable and we realize this, so we try to minimize it to make Others comfortable. So they believe we are not having a problem coping.

We mask it because we do …

The looming future of pain.

Thinking about that infinite road of pain is never a good place to linger. It leads to thoughts of hopelessness. It feels overwhelming. It reminds of that past we have gone through. Years or decades of pain and how damn hard it was. We imagine how much worse it will be in the future. How will we do it?

Maybe we won't have to. Treatments come on the market. There is potential things will get better in that future. So there is some flawed thinking when we think of all that pain. Not to mention we lump it all together in a Mass of Pain. Like some massive monster looming in our future waiting to conquer us. That is not how we get through pain. It is day by day.

That is how we should think about the pain. Not this future of it. But today. Every day a new day. Coping with it one day at a time. With our goals small, precise and specific.

Thoughts about this horrible pain future I see often hit me late at night with high pain. I think... this is what there is for me. This is it. And this…

#Fibromyalgia is a central nervous system disorder

Some researchers are now suggesting that Fibromyalgia is a lifelong central nervous system disorder.

“Fibromyalgia can be thought of both as a discreet disease and also as a final common pathway of pain centralization and chronification. Most people with this condition have lifelong histories of chronic pain throughout their bodies,” said Clauw. “The condition can be hard to diagnose if one isn’t familiar with classic symptoms because there isn’t a single cause and no outward signs.” Daniel Clauw, M.D  The pain is essentially being amplified and at its core is coming from the brain and spinal cord. The syndrome is believed to be a disturbance with how the brain processes pain and sensory information.

“Because pain pathways throughout the body are amplified in fibromyalgia patients, pain can occur anywhere, so chronic headaches, visceral pain and sensory hyper-responsiveness are common in people with this painful condition,” Daniel Clauw, M.D A lot of research suggests that opi…

Locked in the #StatusMigraine zone

I have been in a status migraine since November 27th. 12 days of hell. Status migraines are acute migraines that last longer than 3 days. The pain is immense. Indescribable. It swallows you whole.

You begin to just not see an end to it. It begins to just warp your perception of time. You get locked into the moment of it. Every damned second of pain stretches on and on. You can't focus on anything because the pain is so very loud... it drowns out every other thought.

Thoughts get darker and darker. How can this be manageable? Must just push through... But it is unbearable. Yet there is nothing to be done. All the things that could be done, are done, and nothing works. A status migraine is one single migraine. If nothing works in the beginning nothing works in the middle. It just persists and persists and persists.

You are supposed to go to the ER because this sort of migraine is dangerous. The ER here does not comprehend what a status migraine is so I no longer do that. However, I…

Some things cannot be fixed

We want to fix things. Like they are these little complex puzzles that if we only find the key we can resolve it. Done. But life is not like that. Some things cannot be fixed, which we learn with chronic illness and chronic pain. They can only be carried. We have to cope and deal with the symptoms we have.

There is treatment but there is only so much treatment can do. When we first get diagnosed often we expect great things from medications and treatment. That it will do the fixing. That it may not cure, but it will make us feel significantly better. Like I have had happen with asthma medication and hypothyroid medication.

Then we learn things like chronic pain have complicated treatment for a very complicated problem. One that is not even truly understood by science yet, so the treatment is pretty lacking. So in that respect we will feel pain and suffering even with treatment.

We have to learn how to live with it. To carry it and live with it. To live as well as we can with it. Whic…

What you #think you #become

The story we tell ourselves about ourselves is important. We tell it to ourselves in all the things we think and we believe it. So what you think is what you become. The good thing is when you notice that is not such a good thing, as in the case of depression, you can change what you think.

It is true as well with our story of chronic pain and what we tell ourselves about our pain. If we say this pain will never end and there is nothing we can do about it we will convince ourselves that nothing will work and it is not worth even attempting new things.

If we say to ourselves this pain is something I have to cope with in order to live my life. I have to find methods and things that will decrease my suffering to increase my quality of that life. Then you will be open to new things that will help you with your pain and suffering.

However just because our thoughts make us doesn't mean changing them is easy. It takes a lot of consistent work. The thoughts we have are habitual. They hav…

Punishing the #pain patient

“We propose that pain intensity is not the best measure of the success of chronic-pain treatment. When pain is chronic, its intensity isn’t a simple measure of something that can be easily fixed. Suffering may be related as much to the meaning of pain as to its intensity,” they wrote.“Patients who report the greatest intensity of chronic pain are often overwhelmed, are burdened by coexisting substance use or other mental health conditions,” they added.Instead of opioids, the doctors say that an interdisciplinary and multimodal treatment coupled with coping and acceptance strategies are critical.  In addition, they conclude that a “willingness to accept pain and engagement in life activities despite pain, may reduce suffering and disability without necessarily reducing pain intensity.”hNational Pain Report

In essence what they are saying in the article is that they are trying to find new ways without opiates to treat chronic pain. And one is well teach them to deal with a pai…

Drop that damn guilt

I was thinking today about work. How this leave is longer than I intended and how I feel very guilty about this. How I went on leave at all and let down my boss who is a great boss. How I wish I was well and this wasn't an issue.

Then I stopped myself and said. No. It is not my Fault I am ill. Not my fault. Not my fault.
And I have to do the things to improve and maintain that health. Ensure it does not get worse. Sometimes these things are necessary and this one was necessary, due to my mental health at the time. I know improvements need to be made. And I should not feel guilty about this necessity.

We have a right to care for health. We should without the guilt of it plaguing us. Situations do not always make us comfortable, but we shouldn't be caring for everyone but ourselves, should we? No we should have our own well-being in mind. When we do it makes it easier to then do the things we can do Within our limits. Taking care of ourselves actually makes easier to handle thi…

Think positive... wellll

Why You Shouldn't Tell Someone With Depression to Adopt a 'Positive Outlook' 

When you tell someone with depression that they should try having a "positive outlook", you might think that you are being helpful or that you are providing genuine advice, perhaps on the basis of your own experiences. But what needs to be understood is that, for most depression sufferers, it is simply not the case that it hasn't occurred to them not to be in a state of intense and asphyxiating sadness that engulfs them entirely. Rather, it's that having a "positive outlook" is not possible. Telling someone that they should be happy when they are not presupposes the idea that we somehow have complete agency over our own emotions- after all, we are perfectly able to change the way we interact with and perceive the world if we just made more an effort to think happy thoughts. This is probably not true of people in general, and it is certainly not true of depre…

Holiday Article about #Fibromyalgia and #ChronicPain

This is an article I wrote about the holidays. Always a good idea to post it early since part of the holidays is shopping other social obligations like work parties and other events.