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.

Wednesday Wonderings: blurred lines

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Migraines are the kind of disease people like to discount. It is just a headache, they think. It is just a once a year deal, they think. So when you are chronic and a lot different for you and certainly a migraine is a lot more than a headache, you are still discounted. You can be intractable and disabled but seen as not sick enough to actually be on disability. I’ve seen it. We often hover in that blurred line of disabled and not sick enough, by others, by insurance companies, by doctors… people that matter for our lives. People who don’t listen. People we have no control over. And they randomly choose one and that affects the fate of that migraineur’s Life.

And we walk the blurred line of functional and non-functional. One moment barely function and the very next non-functional. People wonder how we could do something one day and not the next. But the pain of a migraine varies within the migraine. Or can be half treated. And migraines vary themselves. One could be a 7, and you can be barely functional at that. One can be a 9 and you cannot function at all at that. We, though, have to live in the shifting of pain and functionality all the time.

Just as we have to live in the shift of tolerable vs intolerable pain all the time. We have limits to our pain tolerance. We cannot function when we exceed those limits. A 9 migraine is an intolerable pain.  To expect anything from a person in that level of pain is idiotic. Yet, people do. I have had people expect things from me at that level. Forced me to. And I didn’t get far.

But that blurred line between who we are with pain and who we are without it can really haunt us. With it we can be irritable, moody, frustrated, exhausted, confusion, have brainfog, memory issues, concentration problems…. we are fuzzy, zoned out, tired, moody versions of ourselves.  When do we get to see that person we are without the pain? Just a glimpse here and there? And that is the saddest thing of all. I barely know that person. Barely see that person. I am more the person in pain than I am ever without migraine pain.

Fear factor

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Here is the thing about fear and pain. We learn it. For me, it came from working a decade in a horrible workplace. The environment was horrible because the manager was. I don’t know if it was the stress or all the horrible things she said, but my migraines got worse and worse until they couldn’t humanly get worse. And this made me profoundly depressed. She, got worse, as a result and made me feel worthless. I literally could not picture a worse place to be in mentally for chronic pain. And it has taken about three years to get back some stability in mood and chronic pain management. Not that I blame that manager entirely since my doctors were not helping much either. And I had exceeded my ability to cope with pain at that point. So I was just pushing through and pushing through. But self-worth? Gone. I blame her mostly for creating the worst conditions possible for someone with chronic pain to work under. Like she was following a guide of ‘How to treat peope with chronic illnesses in the workforce’ and doing the exact opposite. Ultimatums, demotions, snide veiled threats and some really vicious conversations. I felt such shame for being ill. Such guilt. Such hatred of self.

So I have issues with self-worth now. This idea that the pain will always win and I will fail at everything I try. That I am worthless because of the chronic pain to every one.

That is where fear comes in for me. The low self-worth tells me I will fail. So I fear to try because failing to function and thrive makes me feel so much worse. Failing to try though? Seems even worse.

It affects everything from work to social lives… this fear. We anticipate pain so we do not go out. It will be worse as soon as we leave the house… so we don’t. A new job would be too hard to handle, so we don’t take it. We fail to poke and prod out limits for fear of exceeding them.

Not the way to live with chronic pain. The way to live with chronic pain is Always Be Prepared when doing anything… but do do things. I go out to a friend’s house to play cards and I am prepared when I do. I take precautions before I go out. Rest, ice, hydration and magnesium oil. And when I am there I have a painkiller and a triptan. If it gets beyond my capacity to cope we go home early. No harm no foul. And I enjoy myself. Migraines will come whether we want them to or not. Often will in my case. Often have them in my case. But I still have a life to live with them, within moderation and taking all the steps to keep the migraines tolerable as best that I can.

Yet that fear of failure due to this fear I cannot cope with the pain lingers due to past experiences with it. Doesn’t matter the situation is entirely different. That I have an awesome manager. That I am not depressed, like that anymore. That I do see the pain clinic and the migraine intensity is lower than it was. That I do a lot of things to manage the pain. Entirely different situation and yet due to my low self-worth I no longer feel I have the capacity to accomplish anything. I have the desire. The ambition.

I shouldn’t fear the future based on the past. But pain, is something to fear. It is hard not to fear the place I was in and ending up there again. It was a terrible time. I should think of the present and moving forward with new skills and improvements. And managing the pain while at work in the various ways I manage it at home.

Screw fear, eh?

Migraineur Monday Musings: Just a headache

when you call migraine disease 'just a headache' you_

It is just a headache. It is a headache if you get the headache portion of a migraine attack. It is also a disease. That doesn’t necessarily come with a headache. But it is a profoundly disruptive, complicated, complex, painful, life altering headache disease.

So it really does minimize my struggle with it for the last couple of decades to say I just have a headache. If it was just a simple headache you’d think by now someone would have figured out how to stop them from being so frequent.

It minimizes the complexity of the disease itself. Doesn’t mention it is a disease and that we have attacks with 4 stages, of which only one is the Headache stage. Again not necessary to the attack itself if one gets silent migraines. It is a complex disease.

You make it sound like a couple of Tylenol or Advil and I Ought to be good to go. But that isn’t the case because treatment is also very complex. And too much of a good thing can cause rebound headaches, so I cannot even treat every migraine I have.

You seem to imply that I should be able to power through it if it is ‘just a headache’ because you cannot comprehend the pain or what powering through it does to a person over time over and over again.

Whimsical Wednesday

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So my spouse and I were looking at an old picture of us when I was 20 and he was 23. I’d show it to you but I’d have to scan it and, well, I am lazy right now.
Here is me around 21-22.

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I actually still have those pants. Use them for painting and things of that nature. I make things last, man, until they fall to threads. Until they become cool again. That there I am sitting on is an orange, burlap feeling couch my mom gave me. I bet it still exists as well somewhere… nothing could kill that thing. We were waxing nostalgic because I will be 40 this month, which means we have been together roughly 20 years. We are not precisely sure. But we think we got together a few months prior to my 21 birthday. I remember getting a gift anyway. So every birthday that rolls around I keep track of how long we have been together roughly from 20.  Likely out by a few months in there.

Anyway, we looked at the picture and he said someone in my community of health friends has said to him that I was lucky to have him that he knew all my health issues. He was there in the beginning. Indeed he was. When I met him I had undiagnosed Fibromyalgia and I was diagnosed that year. He stayed with me. I had my first migraine at 21, around three a month, not counting the menstrual migraines which I didn’t know were migraines until years later.

These were good times for me. I was actually coping with the FM well and succeeding in my studies. The migraines were episodic so responded super well to triptans. When a triptan only half worked I took two Advil and an ultra Tylenol and slept. Everything was manageable.  Except for summer jobs all of which were the wrong type of job for FM (standing for 8 hours, repetitive arm motions, lifting too much) and let to significant pain. So I knew what I could Not do from that experience I’ll tell you that. We had a fine social life at the level I could handle, which is more than I can handle now.

Hell, even in the picture I don’t have sunglasses on. Pretty strange for these days with either sunglasses or tinted specs.

So I know you can be chronically ill and fulfilled in all aspects of life with well developed coping strategies. I had learned the hard way, before I met my spouse how to cope with the FM, but I did learn. I was there though. I remember it well. I was coping well.

But as this story happens to go the pain got worse. FM actually got worse. But the migraines, well, that was a home run of pain. That is when coping strategies fail. Mood plummets. You can’t function and push to try and fail. You self-worth tanks. And everything crumbles to pieces. So I also know too much pain is deadly and you cannot function with it.

This isn’t a holy that went downhill fast post or my spouse is awesome post (he is). But a post about potential migraine treatments in the future that could turn back the clock and bring up back to episodic and manageable episodic… not high episodic that is actually as bad as chronic statistically that they are basically alike. Yes, I am talking CRPG research. I have all my hope on that working amazingly well. It likely won’t work as well as I want it to… but a girl can dream, can’t she? 3 to 4 years more and we will find out I guess.

A tale of doubt

Chronic illnesshasbeatenonmy self-esteemmyself-worth.I feel ashamed for being ill and people reinforce this.I feel embarrassed and people make me feel like I should be.

I know I have a self-worth problem. It developed over time from the guilt of being in pain, missing work and being told I should feel guilty about it. Started to feel pretty worthless. Then my functionality began to suffer. Too much pain once migraines become daily with the fibromyalgia in there. Even though I was out of that negative situation I was now reinforcing those beliefs. That I was worthless because I couldn’t function. I struggled to just get to work. I missed too much and wasn’t able to be that productive when I was there. Reduced to part-time. Still had problems maintaining. Went on leave and that is where I am at now.

Problem is it causes a lot of doubt about what to do work-wise. I know I am intelligent. I know I have some capacity to think through pain, as we all adapt. What I have a problem with, daily, is reliability. The pain variability is dramatic. It can start at a 6 and amp up to a 9 in 2.5 seconds. It can be a 8 or a 9 all day long… and you can’t function or think through that pain. Reliability basically goes out the window for anything that needs consistency or doesn’t have real flexibility.

Reliability- Nope

Dependability- nope

Pain variability- yep

Pain constantly-yep

Can’t drive- yep- due to now the vertigo gets worse from driving 15 to 20 minutes. All the time. Passenger or driver, I get it. Clearly driving with it is out though.

And I now doubt my capacity to do a damn thing. It seems like the simplest of jobs I could think of I tried part time. And it didn’t work. I now have doubts about anything else. It worries me immensely.

I can write. Pain or not. I have that. Making money at it… another story.

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?

Dance in our chains

Occasionally, it is true, we dance in our _chains_.png

We all have different chains. And we all have them. The chains we have are chronic pain, stigma, doubt, and our own reactions to the pain as well as depression. Like my self-worth has really taken a shot from having chronic pain for decades. And I carry that weight with me. What Nietszche is talking bought is societal chains. But our chains, the pain, the stigma, the reaction to the pain, comorbid mood disorders… are a heavy and tight chains to have been loaded down with.

And it is true we have to learn to dance in our chains. Know that these are the chains that we have. We will not be rid of them. It is our burden to carry. We accept that. And we, occasionally, have acceptance and we, occasionally, live our lives anyway. We find a way to dance with those chains. A way to live our lives with that burden of pain weighing us down and restricting us.

Depression… well that is knowing the chains are there and knowing how heavy they are and knowing we will never be rid of them. And fixating on that. Feeding the pain and stuck in an infinite loop that feeds on itself. Everything that could add pain and suffering just gets added to the infinite loop and we can never escape it. Depression never lets us see beyond the infinite loop of its own suffering. Clarity only comes when we are outside of it and then we remember what we were thinking and how easily we can get sucked back it.

How do we do it though? Dance in our chains? They are some damn heavy chains. Reminds me of the ghost in Scrooge. Woe is me, dragging my chains around. It must have to do with the fact that we know there are moments of lesser pain we can take advantage of. Steal moments. And in those moments who knows what sort of dance we could get?

Easier said than done. With chronic pain I can say we should take advantage of lower pain levels to go out and do things, in moderation and pacing ourselves. But I am talking about Fibromyalgia pain and other forms of pain. Migraine pain doesn’t play by those rules. It doesn’t care if you pace or moderate. It stills slams into you. You can’t so much of anything when it does. Functionally you are not all there. And you are fatigued. And dopey. And dizzy. And nauseated. And the pain makes conversation hard. The environment of sound and lights makes it rather painful to be anywhere. You cannot dance in those chains. Maybe sit there with a sort of blank expression and try a half-assed conversation. At the same time being more aware of the pain than literally anything else. It isn’t the same kind of pain. It is more Present. I have them every day and I am not sure how one gets around that. Moves around that, or with that. FM, yes. Migraines… not so much. I force myself to do small things, but I am just not all there and I cannot function well at all.

It does make sense if you Don’t get them every day though. Live in those days. But for those of us who Do get them everyday. I am just not quite sure what we ought to do. I have been told to accept the pain and live my life. I do accept it. But I have to say if it was just the FM this would be substantially easier. And maybe people don’t get that. But migraines inhibit so much.

So it seems to be a very careful life. Of careful movements. Of carefully going outside with a ride, so you don’t drive like that, with sunglasses and a hat to protect yourself from the sun… knowing the pain will get worse because it always gets worse when you leave the controlled environment of the house. Carefully getting what must be done done and when the pain is worse coming home to relax. Not working because it becomes impossible to function. Barely able to manage chores, but carefully doing 5 or 10 minutes a day. Gently, carefully. Everything makes the pain worse, so after, rest. Rest, and know it will go down again soon… just have to get through the high pain. Gently, carefully exist. Not too much. Not too fast. Rest when the pain gets too high. No dancing. Just careful, gentle living. Or the pain will be very severe as punishment for doing anything at all More.

In the arena?

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I get a little tired sometimes about people with no pain or illness judging those of us with chronic pain and illness. Making assumptions about our lives. About our pain. About what we can or cannot handle.

Hell, I am just plain tired.

But if your not in the arena just at least understand you might not understand what you are talking about. Just might not. Maybe just listen a little. Give that a go instead.

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.