The facade effect

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I wonder how this game would go with chronic migraines. A lot of screaming and clutching our heads?

Maybe it would make us more visible, though, eh?

And when I have vertigo this would work.

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I know our facade helps us cope.

I know we use it to make our family feel better.

I know we use it socially to make people feel better.

I know we use it at work because we must.

I know we use it to hide the pain or depression.

But, damn, sometimes it just makes it seem like it makes us invisible.

Like the pain is never seen. I get stoic when the pain is high like now. I lose my smile. My laugh. I get quiet. Stoic. Numb. Doctors have commented on it. Used that exact word. Stoic. I want to tell them it hurts to cry. That releasing that emotion is like a floodgate when it starts. And it makes you feel hopeless. I want to remain calm in the face of my worst pain. In control. Because I don’t feel it.

But maybe we should Shatner them. Show them. Maybe they need the pain behaviors we have suppressed through our long life of experience.

I use my words to articulate myself. But I wonder, is it enough?

The opiate Epidemic Canada

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In Canada a lot of people are dying from fentanyl overdose: Hospital stays for opioid overdoses on the rise, warn health researchers They are looking to a lot of different solutions to the problem, including stricter boarder control. But another thing they are doing is of course declaring an opiate epidemic… and making it harder to get opiates… for actual treatment.

Chronic pain patients feeling left out from opioid discussion

Dr. Roman Jovey, an Ontario doctor who specializes in pain management, wrote to the Ontario college in July to express concern that the American dosage guidelines “will harm legitimate patients with chronic pain who might benefit from the careful prescribing of opioids.”

Bremner and his group aren’t saying medication is the only answer. He does regular therapy in a swimming pool and is a major proponent of peer support groups.

But many therapies aren’t covered without benefits, and that’s something Bremner said many chronic pain sufferers don’t have.

The provincial system, meanwhile, has a growing wait list.

In the province’s central health zone, 1,266 patients are on a two-year-long waitlist for pain management services. Elsewhere in the province the wait ranges from three months to two.

Those wait times and the fact a majority of doctors have little training in pain management add further challenges for chronic pain patients. The National

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She acknowledges that some doctors may over-prescribe but she’s accusing the provincial authorities of fear-mongering, making family physicians reluctant to prescribe minimal amounts of painkillers.

“What I am very critical of is unleashing a storm of these investigations, creating this climate of terror,” Mailis said.

She criticizes the government for failing to fund alternative pain-treatment methods such as psychology and rehabilitation, leaving doctors no choice but to prescribe narcotics. The National

Once again we have a situation where they are making doctors afraid to prescribe pain medications to pain patients, but have Nothing in place to help the pain patients. Bravo. So they will have pain and more pain with a heaping of suffering on the side. And like the States it will lead to more suicides, which pain patients said would happen, hell I said would happen. Unmanaged pain is itself a suicide risk factor and doctors ought to know this. No one is keeping track of how many More people are committing suicide of course, because frankly they don’t seem to care.

I heard they were going to start the urine sample thing here in Alberta. So let’s assume pain patients are addicts why don’t we? Make them do urine tests to prove they are not. Of course those tests sometimes show false positives which then could cause them to be taken off medication, but who cares? And really it is embarrassing and disrespectful and time consuming but whatever, right?

In the United States I have heard of people with horrific pain conditions being completely taken of their medication, without being weaned off. I have heard of them being put on much lower doses, that doesn’t manage their pain, so they cannot function and therefore cannot work. I have heard of false positives on these urine tests from simple OTC medications… and having to do secondary tests themselves to Prove their innocence, because of course they are just guilty addicts not pain patients. I have heard of pharmacies refusing to fill prescriptions. Of doctors refusing to treat pain patients at all. Of ER doctors turning patients away or now saying if they want treatment for pain it is ‘drug seeking’ behavior.

So tell me again who suffers from this war on opiates? The drug addicts who will find their fix no matter what you do? Or the pain patients that actually need the treatment? Seems to me the ones that suffer are the Last ones that should be suffering any more. And yet they will, just like in the States, they will suffer.

 

How to deal with migraine pain

I have chronic daily migraine with aura that is intractable. Pain literally can drive me nuts. It can make me suicidal. It can drive me to distraction. It can make me non-functional. But it is literally my life, so I have to deal with them one way or another all the time. Some better than others.

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Distraction: This is by far the most common approach to coping with the pain. It cannot be used for high levels of pain, because the pain impedes of the distraction you are using but when I am at a 7 or low 8 I can distract. And basically anything that you can engage in that requires no In depth thinking can be a distraction. Some things I do:

  • Blogging- One of my favorites.
  • Coloring- Next to medication it is said to be very relaxing, and it is easy, so there is that benefit.
  • Reading- Some people can read with a migraines, others cannot. I can. Especially fluff books- ones with simplistic plots.
  • Writing- I write fiction but another way to express yourself that I do is journaling and gratitude journals. Both a great idea. In a journal you can just free flow thoughts. And sometimes free-flowing about your pain and feelings, makes them less Present.

Sleep/Rest– Sometimes when the pain is high or the fatigue is we simply need to sleep or rest, if and when we can. It can be necessary. No guilt allowed. It is part of pacing with pain to do so when pain is high.

Zoning– When pain is high we sometimes need activities that require no thought at all. Where information is presented to us, because we have very low concentration levels and ability to focus and are easily confused. So what I do at this stage:

  • Netflix: Binge a show on Netflix.
  • Pick a comedy on Netflix for a mood booster.
  • Watch a movie. I have a lot of movies on DVD so I just choose one of those and relax to that. Again, if I feel down, I will choose a comedy.
  • Listen to music
  • You can also visit support groups online and interact with people. Makes you feel less isolated and gives that social aspect you cannot get with higher levels of pain. Goes for all social media.

Meditation: I can and do longer forms of medication, like 20 to 30 minute body scans and breathing medications with a migraine to try and calm the distress that comes with pain. Can only be done with a 7 level of pain. Higher and the pain levels seem to interfere with the whole thing, or do with me so far. But it is relaxing. And if you cannot sleep for example then this is an idea to help get you there if you need to.

 

 

If you are silent about your pain, they’ll kill you and say you enjoyed it.

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Silence isn’t an option these days when it comes to chronic pain. Often we suffer in silence. Often we have a facade to mask our pain. But with the opiate epidemic in the United States and a lesser extent in Canada… which led to the severe restrictions on opiates in the States and is spreading to Canada, what we have is pain patients suffering. Pain patients that can’t get their medications at pharmacies. Pain patients that have to take pee tests to Prove they are not drug addicts. Pain patients being treating like drug addicts as Par the Course. Treatment refusal in the ER. Being mocked and shamed by doctors. Being told they have a ‘problem’.

Pain patients paying the consequences for a problem that isn’t theirs and never was theirs. Their problem is Pain and Now their problem is Also lack of treatment of that pain. And the people addicted to opiates? Well, they were getting it off the street to begin with so it makes absolutely so difference to them.

If you are silent about your pain, they’ll kill you and say you enjoyed it.

We need to speak up that this treatment of people in pain is not all right. That untreated pain is a suicide risk factor. That they are destroying the quality of life of countless people. When did quality of life of patients suffering no longer matter? When did these so called medical professionals and agencies decide that suffering is better than functioning in the world?

As a migraine patient it isn’t really my battle since it is difficult for my brain to handle painkillers without rebounding, so they are only something I can tolerate occasionally at best. So I know a lot about suffering and a lot about untreated pain leads to suicidal ideation and lowers your quality of life.

People need to speak out about what is being done to them. Let anyone, tell everyone, tell your local newspaper, write a blog about these new struggles you now fact and the Impact on your life now. Get the word out. Advocate. Protest. Sign petitions. Make your voice heard.

The pain epidemic is upon us. And no one cares. Make them care. Make them see.

Our bubble reality

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You ever get that sensation that the pain is the most real thing you know.

It:

  1. Controls when you leave the house.
  2. Controls if you can work.
  3. Controls what sort of job you can have and what hours you can work even
  4. Controls your capacity to function.
  5. If you can make it to plans you made.
  6. If it is a day of doing things or a ‘lost day’
  7. How much you socialize with the outside world.
  8. To be honest how much you interact with reality as a whole.

It is the controlling boyfriend you cannot be rid of. It is that which controls out lives. Dictates it. That which we obey and if we do not, it punishes us. I suppose more like a tangible little mean god riding in our brains. Or a mean, testy demon riding around back there zapping us to amuse itself. We don’t intentionally think about it. It is that guilding factor though. The motivation around which we make conscious choices.

Nevertheless we do everything to manage the pain, get around the pain, plan so we can do things with the pain, so things with pacing so we can cope with the pain and learn how to cope with the pain to deal with it daily. Our lives circle around it. We consider it, factor it in, every single part of the day. And it interferes with our reality every moment of the day.

One might say it is our reality. Migraines change how we see, hear, feel, smell, react, think, talk. The pain changes how we function, think, consecrate, remember. Our reality is completely influenced by them.

We are in a bubble reality of migraine and outside is everyone else’s reality that we are trying to interact with but it doesn’t quite match up. Different operating systems. A friend tells you about their upcoming promotion and the family reunion they are going to and perhaps a trip they are planning for the end of the year. You wonder how long it has been seen you could even have ambition to aim for career advancement. How you struggle just to work a job. To get to a job. Function at a job. Financial instability is the new normal making vacations not possible unless they are very simple and even then it does not exempt migraines from coming along. And family obligations are important if they are close by, but traveling? That would be too much. Too much migraining. No down time. she is so excited. And you for her. But this is not your reality. You can’t share yours. It would be Debbie Downer. And no one wants that. We are in parallel universes. What motivates her in her life, is not the same as what motivates me. How she sees reality, isn’t how I do.

Sometimes I think I'm diagonally parked

In this alternate reality I find myself so many things are important to people that are not important to me. Career: Have none. Children: None. Ambition: Can’t have that. Money: simply not in the cards.

I simply want to reduce my suffering, pace myself and cope with my pain. In my bubble reality that is the goal. Because in mine the main motivation is pain. All the things I do are guided to the goal of reducing suffering and pain… because happiness in life follows. I meditate, biofeedback, exercise, do pysio, avoid triggers, handle the migraines I get in specific ways, take the medication I need, do relaxation breathing, use migraine balms and ice… everything I can.

 

How do we even do this? #Blogboost

EmilyD

There is something special about chronic migraines. In its unbearable suffering. I admit I have not exactly been responsive to treatment. Recently at the pain clinic my doctor put me on 200mg of slow release tramadol for pain. And nada. I actually wondered if it was a strong pain killer but someone else at the same pain clinic… for sever TMJ was getting a 1/4 the dosage and was doing great on it. Either I respond poorly to it, or it just doesn’t do it for migraine pain. It actually moderately helps with fibromyalgia related pain, which I rather like. Not a lot, just sort of takes the edge off the sharper pain. But it is like it ignores the migraine pain altogether. However, there is no other pain killer he would put me on due to rebound effects. He did consider a NSAID but due to my rather unfortunate response to previous NSAIDs and now side effects that wasn’t an option. He is completely right to do so. My doc once put me on codeine for a rescue med and I rebounded like crazy on that. More than twice a week and the headache From it was nuts. There is no winning with rescue medications. The only reason they tried the tramadol at all with me is because I have been completely non-responsive to medication. I do however respond to triptans, just have bad side effects so cannot take them very often at all.

So there actually is no option. Aside from trying botox for a second go around, when it failed the first time. Nevertheless, I am going to try it, because rather nothing else to do. And when you have nothing else to do, you repeat and hope for the best.

The pain is mind-boggling. So difficult to even attempt to function through. To even want to contemplate functioning through. But doctors all encourage work. Only part-time, but work. And it is just so freaking exhausting to try to manage the pain.

If I didn’t have a medication to manage the depression associated with all this pain, I would in fact be suicidal from it, as experience has told me. As it is, my mood still dips quite a bit. Because, well, it isn’t exactly fun and games is it? But it is constant. A constant battle of pain every damn day. This is because the pain levels are quite high. For example FM pain varies from a baseline pain of around a 4-5 with more intense pain in specific areas of around a 6… flare ups get to 7 or 8. Migraine pain ranges from a 7-9 all the time. So all the time I am in 7-9 pain. Best case 7. Good day.

And a 9 is extremely high intensity pain. Yet I am told to work through it. To push myself because the pain will be there regardless and I need to work. That is effing high pain. I have troubles driving with that level. Troubles just moving. Thinking is very narrow and tightly focused… and not all there. It is like the pain gives you blinders. It crowds your brain so you have to narrow your focus to the specific task in front of you. Inch by inch, get though the day. Plod though things slowly and methodically. Praying for no errors. And just counting down the minutes until you can get home to suffer in peace. Time becomes infinitely slow. Drawn out. Endless.

And I wonder how the hell am I even managing this? Not well really. Not well enough at work, still, even part-time. The pain specialist said the pain and medications make things difficult cognitively. Not to mention migraine pain specifically does. How the hell do we manage all this pain? Affecting our capacity to think to function to move to sense our environment with accuracy… Because we must, obviously. But I don’t know why we don’t just up and quit one day. Enough! That is it! I’m not moving from my dark house until I have to… screw you society! You can’t make me suffer more! Course they can. And they do. And we continue on.

Where does all that damn strength and courage even come from? Some days I cannot get out of bed because of the pain and the creeping depression that tells me I just don’t want to move in all that pain. Those days are days the pain wins. How I manage to get out of bed on other days… I have no idea.

We must be badass mothertuckers. I don’t feel like I am, but to do what I do in pain I must be. All I ever feel? Is the guilt of not doing when in pain. And I am sick of the bad pain days. Because there are too many of them. If I could just decrease the intensity of these migraines I would be so relieved. As it is, I feel like I am running in a dream… where my legs don’t work and are stuck in thick air and I get nowhere at all. Nowhere fast. Can’t escape.

I wonder if I am the only one that wonders… how will I get through tomorrow with this pain? And how long can I endure this pain? Years? decades? So maybe I am a badass Mothetucker but I am a tired one. Far too tired of this pain game. Worn to the bone. How I have survived this long is something that surprises me. I don’t know how I did it. Moment by moment of course. Still decades of pain wears a person down. Yet we carry on. Tired. Badass with our freaking shear determination and guts. I will win this day! And we do.

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The 9

The pain crowded me out of my head. No room for anything else.

It was a 9

I would say a 10 but I reserve that for the worst pain I have ever experienced.

This was just a smidgen below that.

What do you even do when a migraine is beyond acute?

When a triptan fails?

When you know there is just no point in going to the ER. Besides that, what a horrible experience it is anyway. Not to even get treatment in the end of the horrible experience. No thank you.

But now two days of horrific pain and I wonder what do you do? I often wonder this when I get to that high 9. That frantic edge of pain. That I wish i could cry, but that would make it worse. That I wish I could distract myself, but my brain is too crowded with pain.

I have to work tomorrow. I can’t miss another day. I am not sure I can function with this pain. I dearly hope I manage to get rid of it tonight. I am so dizzy with it. I mean that literally, I am quite dizzy with it. So out of focus as well, maybe because of the dizzy spells. Or just the pain levels. And the damn ringing in my ears is driving me to distraction.

I often talk about function through the pain. Wearing a facade and stoically getting through the day. That is 7 and 8ers. When you breach that pain threshold of tolerable to intolerable, from bearable to unbearable, from half-functional to non-functional… that is different. Thar is what people never get. How you can be ‘functional’ one day and not the next. Fact is we fake it real well. The pain is difficult to tolerate, best case scenario, but we do it, because we must. We must, we must. That is life. Worst case scenario, and it goes beyond our capacity to pretend to function with.

It is when I fight my moods the most as well. My mood suffers when I have to fight this intolerable pain, with no capacity to distract myself, often sleep deprived. It was why I was diagnosed with depression related to chronic pain. High pain, depressed. It in fact, used to plummet like a rock into a deep, dark, dangerous depression. However, now I am on Abilify which prevents the severe crashes. But still with high pain, high suffering, and my mood drops. I am just a big ball of pain wondering why I have to exist like this. Why i will have to work like this tomorrow. And will feel guilty if I cannot.

Makes you wonder about the 10? Well, it is mindless. Right now I am frantic in pain. With a 10 I am desperate. Incoherent. Cannot move an inch without increasing the pain exponentially. Lost to it. Only a specific migraine gets me into that state and it only happens once in a while. I can’t even describe it the pain is so intense. Only that movement is agony.

Status migraines, acute migraines lasting more than three days, are also 9s. Generally high 9s. But 9s. You are supposed to go to the ER for them because they increase risk factors and can be dangerous… and they are horrifically painful because without treatment they can last weeks, months… just going and going and going. You can get dehydrated and sleep deprived. You blood pressure can spike dangerously. I still refuse to go, even if this beast goes status. The hospital here, has no idea what I mean when I say that. I often wanted to tell them to Google it. They never aborted it. (Well once by happen-chance I had a good doctor and could at the time take DHE and that aborted one) Never properly treated it. But the bad taste left in my mouth after poor care for migraines, and other things, had me refusing to go there for anything. I ended up with nerve damage from a status migraine… but really, I would have anyway, since I would have left the ER with the status migraine. So if you have a good ER, you should go. They are in fact dangerous. No one should have to suffer that pain for weeks on end. Case in pain, status migraines caused my suicide attempts. They torment you, the pain of it.

Yes, indeed, the 9… not able to be endured long at All. Two days and I am exhausted by it. I really can’t do a third.

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Pain epidemic #PainMatters

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We hear the media frenzy of the so called opiate epidemic, which seems to me to be people buying to on the street and less people getting it actually prescribed to them. And certainly little to do with chronic pain patients. But we never hear about the pain epidemic. And the lack of pain management.

The fact doctors are less trained in pain than your local veterinarian. Maybe pain patients should go to the vet instead? Or how about pain clinics. How many get to even see one? How many years does it take to get a referral to one? I was diagnosed with migraine and FM when I was 20, had hypermobility syndrome already by then… and when to a pain clinic when I was 38. Tried to kill myself from pain when I was 32. That should tell you a little about the lack of pain management I had going on then. Hopefully the average is sooner than 18 years.

What sort of treatment do they even get there? Are they getting to see a pain psychologist, taking a course in pain, learning to meditate, learning the exercises they need to do, having their medications assessed, being put on medications to help them have a quality of life, having them discuss their work situation and what improvements or changes need to be made their, any physio or other procedures to help with their treatment?

If you take away opiates because your all riled up about it for no reason… what will you replace it with so that pain patient has the same quality of life. Understanding that if you decrease their quality of life substantially you run the risk they will have suicidal ideation and/or intent. Doctors should be aware pain alone is a suicide factor. If they are not, here I am to tell you. Pain. Alone. Is a. Suicide. Factor.

It certainly was for me. I am on tramadol slow release twice a day. Before I went to the pain clinic I lived a different life. It was an existence of crawling through the pain every day. It has a raw desperate edge to it all the time. I was always pushing through the pain, exceeding my pain limits. In survival mode. Get through it. Get home. I was a hermit. Nothing left in me to leave the house. To socialize or do anything. I had a great deal of suicidal ideation. Wished I would die of a stroke or heart attack. I’d get chest pains from triptans that were nasty but never went to the ER… as I rather thought if they killed me it would be a natural death and that was better than by my hand. Finally a suicide attempt.

I never want to be in that place again with no managed pain. It is a hell I still think of. No one should have to endure that. No one should be shamed for opiates being part of their pain management.  Doctors should not be intimidated for using that tool when it is appropriate. And doctors should know pain matters. Our pain matters. Our lives matter. Our treatment matters.