Bubble world

Fraction.You see but a fraction.Chronic Pain.So much is unseen.But felt.An entire existencehidden from sight that affects one's entire existence.Unknown.Perhaps,unknowable..png

Chronic pain is a world. It profoundly affects our perception of self and reality. It affects us mentally, physically and emotionally.  It can break us and make us, and quite frankly, do both. It is suffering and perseverance. It is coping and not coping at all. In this world we have to understand it is a bubble world. It is different than the reality of someone without pain.

And yet, all of that turmoil, change, and adaptation is under the skin. It is an unseen world. Unknown. And perhaps even unknowable. It never ceases to amaze me when I think of the profound impact and raising awareness, how much depth there is to the experience.

I have was writing a fiction piece and the character said chronic pain was like suffocating and choking, like never getting enough air.  Choking on the pain and existence. I have myself said it is a life of inches. People move a mile a minute it seems. While we crawl and suffer for inches.

But there is a lot more to the experience of suffering than that. There is a sense of constant ‘overcoming’. A sense of perseverance. A sense of enduring. Of constant survival, if not thriving, then surviving. Not the victim, the warrior.

Then there is the constant maintenance that comes with chronic illness. All the day to day things we do to ‘maintain’ the pain and the disease itself. Not to mention our actual goals to achieve a better quality of life. And setbacks. And small victories.

There is the hefty emotional toll that has to be looked after as well. Constance self-care isn’t just physical it is mental and emotional as well. Not to mention comorbid mental illness that is so very common with chronic pain… because it is Pain and it is a trial to live with.

It is no wonder it is commonly referred to as a war that never ends. With battles, small victories and retreats but never an actual victory or end. No wonder it comes with fatigue… as we are battle worn soldiers.

And out of all that comes a lot of thoughts and perceptions about our disease and the pain. The guilt. The feeling on is a burden. Not a productive member of society. Not pullings one’s weight. A failure. The stigma often is we should blame ourselves for being ill… and then we blame ourselves for being ill. There is a lot of external stigmas but then again we internalize a lot of that stigma onto ourselves, sadly.

And yet, we can explain all of this and still never make it KNOWABLE to someone. Living in a pained body is an experience you have to have to understand. How the pain is a constant presence. How exhausting that is. How it consumes so much that it is hard to think though. How deep inside you may just feel overwhelming tired of the battle. That you may have had suicidal ideation… thoughts about the pain ending. That some days you don’t even know how you made it this far or how you can go on. But you do. But the depth of the pain, its weight on us, the deeper, darker thoughts, the feeling of trying to get things done with pain and fatigue weighing you down… all this is so unknowable.

And it is always a little sad for me when people I thought had grasped my suffering say something that tells me they really don’t. And maybe simply can’t. Maybe you can’t cross the line until pain is chronic and daily. When it is severe and it presses against you constantly, steatling your capacity, functionality and productivity.

Pain Awareness Month

NYC(3)

September is Pain Awareness Month. Those of us with chronic migraines will be very aware of course.

In light of this I will spread this awareness upon this blog:

Chronic: I have chronic daily migraines with aura and persistent migraine auras without infraction. Every day I have a migraine. I don’t know if people understand what that means. Often they do not. It means pain from 7-9 every day. This isn’t a low amount of pain. This is severe pain. Occasionally we can treat it down to a 6 or even a 5. Often that doesn’t work long in my experience. At least not for chronic migraines. Triptans even will just dull it, work temporarily and then back again. If at all. On days we can use triptans of course. All because medications do not do much for chronic pain, which is why we have to try dozens of complementary treatments to help us manage our pain. And we will still have pain. Just a fun fact. That is the nature of the game. We just want Manageable pain.

I am referencing this pain chart.

comparative pain scale

Continue reading “Pain Awareness Month”

Silent minority

 

My pain is a burning star in the night sky.

We are not alone. So many people suffer with chronic pain. The numbers are staggering. Billions. We are a pretty silent billions though.

 

feeling down

I often feel we are a silent minority. That no one wants to hear about our plight.

One of the hardest things about being chronically ill is that most people find what you’re going through incomprehensible—if they believe you are going through it. In your loneliness, your preoccupation with an enduring new reality, you want to be understood in a way that you can’t be. “Pain is always new to the sufferer, but loses its originality for those around him,” the nineteenth-century French writer Alphonse Daudet observes in his account of living with syphilis, “In the Land of Pain.” “Everyone will get used to it except me.

—  -New Yorker, “What’s Wrong With Me?”

In the land of pain everyone will get used to it but me. It will always be fresh for me. Old news to everyone else. They tire of it. Other people do not want to hear about it. They want your functionality. They want you to pretend to be normal. To strive to be so, even when you have limitations they don’t seem to comprehend. They want you to push through the pain because isn’t it ‘always going to be there?’ They want you to deal with it. Suck it up, buttercup. And hide it. Smile. Be a good, functioning employee. A functioning member of society. Don’t complain about it.

The sense of isolation creeps up on you. Always striving to maintain and never quite succeeding. Always trying to cope with the pain. Think though it. Presenting a facade that is acceptable in public. It is exhausting. You wish people comprehended in the least little bit how difficult it was to get up, to move, to pretend to function to present that facade and get through a day. Just one day. To live a day at a time because that is all you can get through. Just day by day, hour by hour, minute by minute. If they only knew the sacrifices. The careers you had to give up. The ambition you can’t have. Because the pain simply will not permit it. Your very life lived in limitations, moderation and pacing. As best you can, because working saps so much pain tolerance and energy from you.

But in the land of pain… life is different. The rules are different. Life is different. In the real world, people do not see it.
Chronic pain sufferers kept silent and under-treated under new pain regulations.

And they want our silence. As the medical community obsessing about addiction such that they do not even seem to care about the quality of life of chronic pain patients… they don’t care to hear from those chronic pain patients. They are suddenly ‘difficult’ and ‘drug seekers’ and notes are put in their file. For speaking. For saying “I am suffering more than usual and I can’t handle it. It is exceeding my capacity to cope with.” Clearly… that should be ignored. Clearly it would be So Much Easier if we would just suffer silently. Under-medicated. With no quality of life. The pain exceeding our capacity to cope with it.

I have a pretty good medical team myself and opiates are not a viable option with chronic migraines. I have a slow release tramadol that isn’t causing rebounds, but any other would. It doesn’t work for chronic migraines, but mildly for FM. I have little that can be done for my migraines. So I suffer. When it comes to the regulations I speak more so for those in the States and in BC Canada who seriously are in need of opiate treatment and have been taken off completely due to this or dropped as patients because their doctor doesn’t want to ‘deal with a pain patient’ or had their dosage severely reduced. And they have no rights. No voice. They are not addicts. These laws were not designed for them. They are just being punished for them.

Nevertheless isn’t that what society wants? For us to not complain? Do they realize what no quality of life means? It tend to mean no work for one thing. No being productive. No capacity to do anything. To means an existence of survival mode. Just getting through the pain and nothing else. Dooming someone to that is cruel. It is ironic. There are far more chronic pain patients than there are addicts. Addicts will get their drug of choice whether these regulations exist or not and everyone knows it. So all the ones that will suffer are those that suffer quite enough already.

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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Chronic, episodic migraines and chronic pain

the pain constantly haunts my existence

There is on profound difference between episodic migraines and chronic migraines and that is chronic migraines are Chronic Pain.

I once had an employer who had episodic migraines and because of this she believed that she could relate to me with my chronic migraines. I hoped this was true myself because it was so very difficult to get people to understand this was Not a headache. She got that part. Indeed she understood that completely. But because of that she couldn’t comprehend how I could function in the pain, and therefore how could I in fact be in pain. How could I function one day and not another? Why couldn’t they find treatment that would work? Why didn’t I do enough to treat myself? Why was it so complicated in my case?

Fact is episodic migraineurs do not need to know all the ins and outs of migraine research and treatment if they get them rarely. She had no idea 4% of migrainuers get chronic migraines. She thought I was some weird anomaly. She thought I had to be doing something wrong and that treatment was simple. When treatment for chronic migraines is a rather complex thing. She ended up not exactly empathetic to my cause, but I hardly blame her. I had untreated daily migraines and was missing a lot of work. No one likes an undependable employee.

The point isn’t about episodic migraineurs and what they do or do not understand about chronic migraineurs…because we are all migraineurs. And we all understand the fundamental migraine experience.

The point is chronic migraines are Chronic Pain and that is a whole new set of rules to play the game under. No more take a triptan and sleep the migraine off. No, it is trying to live your life With migraines. Because they take up more than half your days… or all of them for people like me. We can’t treat them all with abortives, which means we have untreated migraines sometimes. Like any other chronic pain condition we have to learn to endure the pain. We often have to learn to even function through levels of it. If we are lucky enough we can dampen it a little, which is a good thing. If we are very lucky a penetrative helps with frequency and intensity.

Nevertheless we are not hiding in the dark… we walk among you with our hats and sunglasses and migraine balms and medication filled bags. Trying to live our lives. And people inevitably say, “I don’t know how you do it.” And there is on simple response to that. “We have no bloody choice.” This is our life. We must find a way to deal with the suffering, live in the pain gaps and, every so gently, live our lives.

I could say to you the pain constantly haunts my existence. And it does. I could say there were times I simply could not bear it. And that is true. But it is my life to live and I cannot waste it being afraid of the pain.

With chronic migraines it is your constant companion. It affects every aspect of your life. There will be impact. And impact. And compromises. And more compromises. The pain has a radius… it will affect your loved ones, your family, spouse, children and friends. Yet it is an invisible disability. People will call it a ‘headache’. They won’t believe you should miss work for it. They will believe you are just trying to get out of work. They will believe it isn’t nearly as painful as it is. They certainly won’t believe you can be Disabled from Migraines. Nor that you can function with them, even if you have to, they will believe you must be lying that you have them. Because like I said, how can you function one day and not another? The stigma is profound with migraines.

With episodic migraines though if you get them rarely enough you’ll get sympathy. People will say go home and rest. You must be in pain… look at you. And you will take that triptan and sleep it off and be fine. It won’t interfere with your life, work, loved ones, ambitions, goals, existence and social life. And you would Never imagine functioning with it. If your boss told you to keep working without migraine treatment with a full-blown migraine? You would complain to Someone about that business.

It isn’t that the pain is better… the pain is the same. It is that it is about chronic pain. And chronic pain is a different game.

And the risk is… anyone with episodic migraines could go chronic. Or high episodic, which has the exact same impact as chronic. There are certain risk factors like obesity, starting out with higher frequency, allodynia… and others. But the tipping point can just happen. One day you are managing well with a condition you Think is simple and one day you are trying to function through daily pain.

 

society.

#Migraine and #depression

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I was diagnosed with depression associated with chronic pain, but the fact is migraines play a significant role in this. Migraines can dramatically affect my mood. Significantly when the migraine is a status migraine and lasts for three days to, well, way too long. I have had suicidal ideation. Suicidal attempts. The depression itself can rise and fall like a storm, much like the migraines itself. And powerful. However, due to the chronic nature of my migraines it also became a force in-in-itself. More powerful in times of high pain, but there regardless.

It was ignored for years and I wrote a post about why here. Point is after a second suicide attempt the pain clinic rather thought the depression itself needed to be paid some attention to. When I first when to them they thought it could be managed with just some support from the psychologist who specialized in chronic pain, because the depression was a beast of the chronic pain. In a way, that was true but the intensity of the depression when I was in high amounts of pain and sleep deprived was extremely difficult to get around the excessively dark thoughts. Since I already in the past had a suicide attempt my second one was very spontaneous. I had already crossed that mental barrier and knew how easy it was to cross… so just leap right on by it the second time with little thought or consideration. Pain has a way of influencing thoughts to be deeper and darker. Not, unfortunately, unrealistic… just sharper and more exemplified of reality. Nothing gentle can sneak in there. Therefore they decided I needed to temper the storm with medication. Here is the irony; antidepressants make me suicidal. In fact that was the contributing factor to my suicide attempts, the medications, that made suicidal thoughts aggressive and persistent. Therefore when they looked at my medication choices the pain clinic psychiatrist said I can never be put on that class for pain management again, let alone depression. There were two alternatives and I am on Abilify. It actually works well. I have depression still, especially with a wicked migraine hitting hard. I just don’t really have the extreme lows that I was used to. The freaky scary lows.

Depression is an insidious beast that affects my chronic migraine treatment in so many ways. I was not as involved in my general self-care. I lacked motivation to do anything let alone the exercise I was supposed to do. I didn’t care about my hobbies and the things I used to enjoy anymore. I just wanted to sleep. I’d miss work from the migraines but also because I didn’t want to move, exist, be in pain that day. I am still in what I call a ‘funk’ still trying to encourage my motivation, force myself to engage in self-care. Trying to work on my hobbies hoping to spur my creativity again.

Another thing about depression is the lack of hope. When I feel a bit better I try. I try all the things on my pain management list and I do them every day. Set a routine. But when the depression sinks into me lower. I don’t try. Because why does it even matter? Nothing is going to work. And my routine falls apart. I have yet to find a way to keep my routine through the dips of the depression.

Here is some research to look at for migraines and depression.

Continue reading “#Migraine and #depression”

The tells and the pass

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I can pass for healthy. I know because while I have FM and chronic migraines no one at work can tell when I have a migraine. Which is always. And they can’t even tell when I have a pretty damn severe on. I fake it pretty good because I am in customer service so I have to. I have the finest fake smile you have ever seen. Natural, smooth and honest. Because I am honest about being pleasant and happy. Just happens I am hiding all the pain expressions and behaviors that come with it.

So I can ‘pass’. At work. Not always at home where my spouse is more aware of my ‘tells’ that give me away.

We all have them. Although with chronic pain we are used to dampening those pain behaviors for various reason, we still have less noticeable tells. With migraines they can be quite migraine related.

Here are mine:

  1. Loss of the ability to communicate is a tell. Whether it is brainfog from the prodrome or aphasia from the aura… loss of communication that is quite noticeable is a tell.
  2. Rubbing my neck all the time is a tell. Because my neck hurts so damn much I just want to try and relieve the tension.
  3. Violent nausea and vomiting… big old tell. My relentless nausea has definitely been noticed by my co-workers as I lose weight and can barely eat. I have also thrown up but have been as discrete as possible about that. This one… pretty obvious.
  4. Vertigo is a tell but more precisely when it is severe or when I have a drop attack. A drop attack is sudden, and I will lurch to the side it is one often either falling or falling into a wall, chair or whatever happens to be there. Severe sudden vertigo on the other hand I will grip onto things and immediately find somewhere I can sit safely. It is a tell something is wrong.
  5. Then when the pain is climbing up into the 8 range lack of smiling, or difficulty maintaining a smile, lack of laughter, silence until I have to talk… is a big sign for me.

I think if people are not familiar with migraines they simply do not see the signs. Can’t recognize the tells. Think you are seriously ill, even though you explain it is just the migraines. Or don’t notice at all.