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.

The big 40 birthday

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I celebrated my 40th birthday on the 28th. That is now 20 years of migraines to date. But it went extremely well. Migraines have responded well to botox and this Oska Pulse device I am using. So low intensity and some migraine free days in there. I am also making sure to use magnesium and take B vitamins. And keeping myself hydrated.

So I celebrated on Thursday by going out with a few friends to Karaoke. I don’t sing but I support my friends. No migraine showed up after indulging in 6 beers. Which exceeded my usual limit of 3. So double. I only socially drink and rarely at that, so I have a low tolerance for alcohol so I was mighty tipsy.  But I quite enjoyed myself.

I went book shopping with my mom (the ultimate gift for me). Clothes shopping with my spouse. Due to my recent weight loss, I was looking for some jeans that actually fit me so I can give away some old jeans to charity. Instead of wearing clothes that are hanging off of me. Then my mom, my step-father, and my spouse went out to dinner. I had a low-intensity migraine but it never became much of anything, just a lot of light sensitivity made me wear my migraine specs.

It was a really good few days, to be honest. I really enjoyed myself.

Flipping into a new decade always makes you ponder things. I don’t mentally feel forty so I did skip the mid-life crisis (mid-life if I live to 80 that is). But it does mark 20 years of migraines and 20 years of fibromyalgia. That does make me think of treatment progression. Treatment when I was younger compared to now. Frustrations with coping when I had no effective treatment at all and the hopelessness of that to some modest treatment, routines at home and some acceptance in myself. It dramatically affects how you cope and live your life. Not to mention mood. When your pain isn’t managed at all, mood tends to falter. When you have no hope of any treatment, mood also falters.  So that needs to be attended to as much as the pain. It complicates things a great deal. Takes time to sort out. How we perceive pain and our lives with it changes over time as well. And our coping strategies are constantly adapting and growing. As is our maintenance routines. I have a pretty solid routine now, but in the beginning… had no concept of what would help, what wouldn’t help and what to do. And absolutely, fundamentally no guidance in the area either. Although, I, unlike some people, do have a wonderful supportive mother who has recommended things for me to try when I was younger and guided me a great deal in this journey. And I needed that. Someone who had my back.

Another thing I pondered was the price of chronic pain. Something people often do not think about when they see someone in chronic pain. They, obviously, would assume it sucks but the impact it has on someone’s life is pretty extreme. While you are trying to find treatment, messing around with treatment, trying new treatments… things suffer. Socialization, financial stability, friendships, relationships. The impact can explode all over the life you had. And trying to stabilize that can take years.

It isn’t an easy life by any means. But it is the life we have, isn’t it? And we have to live it the best that we can.

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?

Right? Wrong.

BrainfogA common migraine attack prodrome symptom.

Brain fog is common with migraines. All that pain is hard to think through. And I have fibromyalgia as well which rather enhances the fog. I wrote about the issues I have with brain fog here: In The Land of Brain Haze it Isn’t Very Brainy Out

Anyway, there is a particular thing that has happened with chronic migraines that is annoying to me. I have lost that ability to tell Right from Left.

I say Right and point Left. When I do so I mean Left. I point in the right direction. My hands are always right. My words are always wrong. Makes for some fine direction giving I’ll tell you that.

I am aware of it now. The trick I do when giving directions or using the terms is I move my right hand slightly, to indicate to my brain RIGHT. And then say right or left. It works.

Recently I was test driving a car and so discovered I don’t do well with listening to directions either. I hear ‘turn left’ and I immediately go to turn right. My brain still mixes the words up when I Hear them as well. So I had to really concentrate on what he was telling me because otherwise, that test drive would have been one hell of an adventure.

It is odd. It happened around 6 years ago. And I cannot precisely say when because I didn’t notice right away. Only when it was pointed out by my spouse. And then one day when I gave directions to this one fellow, After, it occurred to me I had pointed to the right and told him to turn left. In other words, he didn’t find what he was looking for from me for sure. I started to pick up on this fact I was using the words wrong every single time. So I began to move a few fingers on my right hand and remind myself I am right-handed and then say the word… at first, this caused a delay, but now it is less so.

I blame the migraines because of the suddenness of it and because it messes with my spacial orientation as is. But who knows? With a migraine/FM combo a lot of brain misfiring going on in that brain ball.

Casting call from Genuine

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Genuine contacted me via email to see if any migraineurs would like to respond to their casting call in a project featuring migraines.  This is an online questionnaire you can fill out if you are intrigued. They are based out of New York and if you have any questions feel free to contact them. Those selected for the final film will be compensated and submissions are due by Monday, April 17th. It is 600$/day for the shoot with additional compensation for those selected for the final edit.

I did get clarification from another blogger who said they cannot, at this time, disclose the company but it will be a documentary style ad for a medication where the participants will be asked about how migraines affect their lives (jobs, family and so forth).

 

 

Frames of Mind

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Announcement of this awareness campaign has come out to post your art to help awareness of migraine.

Select submissions chosen by notable migraine experts will be displayed at the 59th Annual Scientific Meeting of the American Headache Society from June 8June 11, 2017 at the Westin Boston Waterfront in Boston, MA and other migraine-related events throughout the remainder of 2017. Additionally, art submissions will be displayed on the My Chronic Migraine Facebook Page.