Letter to my 18 year old self

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Dear 18 year old self… you are screwed. I hate to be the one to tell you this but life is going to suck balls in the future. You are going to get diagnosed with the chronic pain condition you know you have. Then for funsies you are going to get chronic migraines on top of that. Totally uncalled for I know. And asthma… I know that one is weird, so by the way quit smoking please. And other comorbid things. That depression you have now, man, does that ever come back. Tell you a secret… pain is depressing. Real depressing. Your life as you know it is going to be forever changed.

So pro tip for you I want you to start exercising now. Like right now. I know you rollerblade and keep up with that. Because that sort of thing gets quite a bit harder so might as well start a routine young, eh? Make it easy on me will ya? When you start getting migraines I want you to ask to see a specialist right away because they are in fact frequent enough and they will never get less frequent.

Because the pain will suck and there is nothing we can do about it I want you to do 1 thing for me. Follow your dreams. That is all we have man. All we have. You will not be able to hold down a job. You think your health won’t affect your ambitions and you are going to be very wrong so I’ll give you a head start on this. Just follow your dreams instead. Screw a career or a 9 to 5 job… you physically cannot do it. Aim for working from home for a day job. I will thank you for it. Because trying to stay in a career and hold it down and power through the pain will break you. You cannot exceed your pain limits like that. But you will try. And then you will want to die. And they you will try to die. It will be very traumatic. And then trying to work anyway After that? Failure upon failure will blow your self esteem and self-worth to shreds. So skip that for me will ya? I would much prefer you secure us a nice stable work from home income of some sort designing web pages or something and follow our dream to be a writer. Let’s do that instead.

You will meet a tall, dark and handsome stranger. And that is cool. He is a keeper.

From your future self,

 

 

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Silent no more

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Migraines are an invisible disease. You can’t see the pain. Let’s make the IMPACT visible for people to see. Let’s tell them how migraines have affected us mentally, emotionally, physically, economically, socially, career, family wise… and every other impact factor you can think of.

I will be sharing images of impact on me and posted them to my Page. And I will be tweeting impact posts with the hashtags #MigraineVisibleNow and #MigraineImpact.

I want to spread some awareness on the impact of migraines. And let’s see if others will do the same.

 

 

 

 

12

Soft lies

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People often want the soft lies. That you are doing well. Better than yesterday. You are coping well. That you can handle it. That things get better. It eases them to know you can cope.

They can’t handle the truths.

That at times you really struggle to cope.

It isn’t better than yesterday.

Sometimes you really cannot handle it at all.

Things do not get better.

And you are not doing well.

These are just truths because this isn’t a fun ride. It isn’t an easy life. Coping isn’t finding acceptance and going ‘ah, now I won’t suffer’.

The truth is it is difficult. Even when we accept that this pain is going to be our lives and we cope and deal with the life we have… we still are struck with really bad pain days and really bad coping days.

If we were to tell them about the really dark times that come with chronic pain, they would of course worry. If we were to tell them that every day is a struggle, they would sympathize but not quite understand. If we were to tell them this life is complicated, difficult and just because we accept this is the life we have doesn’t make it an easy one to live. And sometimes we feel the pain consumes our very lives until little of it actually remains. Sometimes the pain consumes a day and nothing remains except that pain we have to cral through.

Soft lies protect our loved ones from the darker side of chronic pain. The side we fight against. The side we grip onto hope fiercely so the pain doesn’t win. The side that comes out because pain and suffering eat at a person and we can’t always be comfortable with that reality. Everything we do is to survive that suffering. And we meditate, exercise, avoid triggers and diet change and do whatever we can to survive the suffering. We stick to our routines. We ice our heads. We use migraine balms. Take our medications… when we can. Constantly, repetitively doing the things we hope will help us endure just a little bit better. This day, the next day. Because we are strong. Because we need to endure. Because if we don’t the pain may consume us whole. Or we slip into that dark depression that says this existence isn’t worth living.

So we get up. We start over. We move carefully. Gently in the world that overloads us. Do our routines. Hope the pain isn’t too severe and we don’t lose all the day. Hope the symptoms are not too severe that we are too sick. Hope it is manageable on some level so we can ever so gently Be. And we softly say, ‘better than yesterday’ wishing we could hide in the darkness.

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.

The life

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My psychologist had said something to me that I think a lot about. That no matter what I will have pain, aside from the fact a cure could come tomorrow or a decade from tomorrow… point being I have to deal with this pain and I have to find a way to have a life with it.

How is the question? With fibromyalgia I can see how this is done. Pacing, moderation and staying within your limits… and you can have a mellow, careful life in there.

Migraines, intractable every single day migraines, are not fibromyalgia. They do not respond to pacing or moderation and saying within your limits does not prevent them. Trigger management even doesn’t stop them because not all triggers are remotely controllable and some are stack able. Not to mention once you are daily and intractable it just seems you are stuck in the migraine cycle itself. What is triggering them? Existence? Life? Breathing?

It is a different sort of pain that doesn’t respond to the whole concept of pacing your activities. It just hits. And when it does you are functionally useless.

I have yet to figure out how to live with this. Have a life with it. I attempt things and it really doesn’t work out. The pain and then the assault on the senses make everything miserable. Just leaving the house amps the pain and sensory overload. Driving a car… makes it worse. So by the time you get anywhere, you want to leave already.

Medication, triptans, can be take 3 out of 7 days. But they usually only work for 2-4 hours before the migraine comes back. Yesterday we went out to friends. I took my triptan, which has about a 60% chance of working and it just dulled the pain… but I knew it would be dulled for 2-4 hours. So that was, well, okay-ish. Second problem was massive nausea. I took my double dose of zofran. And hoped it would kick in. It didn’t. We had dinner there and I could barely eat at all I was so sick to my stomach. I was really not feeling myself. Or I suppose I was feeling myself, because I always have a migraine. But I was uncomfortable socializing in pain and nauseated. But I tried. And when we left I felt like I failed because I felt so cruddy. But at least I faked it pretty good. Then migraine came back full speed ahead after, so there was a the least that. Triptan gave me chest pains again though.

Non-triptan days are quite horrific overall. I don’t want to do a thing. Today was of course non-tripan. And I was useless. Tomorrow is non-triptan and I was hoping to get some errands run, but leaving the house like that is torment. Last time I did that I hit a car in a parking lot. So there is That fact.

Where is this life supposed to fit in there? Everything is too loud, too bright and too filled with aggravating scents. My brain hates movement of any sort. All the other symptoms can make me dumb, confused, dizzy and just out of it.

My home is my safe haven. Where I can control my environment and do things in silence and darkness. The safe zone.

He said you’ll always be in pain so you might as well live your life. However, I will be in significantly more pain when I do things with the migraine. The pain gets outrageous fast. The best I think a person can do is take advantage of those brief triptan windows. And before the migraine hits… or I should say the prodrome, sometimes you can get things done in the prodrome but of course it does dumbify the brain.

14 sentences about migraine life

Impending doom can happen anywhere… although you sometimes get a warning.

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The aura light show is spectacular, but blinding… and the after-show sucks balls.
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You relate to Migraine by Twenty One Pilots. And only think death is preferable to a migraine, maybe, every 5th migraine.

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The sun is enemy number 1. Shining all bright and mocking your efforts to protect your sensitive eyes from it.

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You go outside and a few seconds later are slammed with a migraine… immediately regretting that choice.

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You make vague plans with no firm timeline. I’ll maybe be there. I’ll spontaneously show up the moment before or not at all.
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Ah, the night. We love the night. Blessed lovely darkness. Hello, darkness my old friend.

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We say we are fine, when we are not fine. Fine actually means: Effing insane nine epic migraine. It is a code word.

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When someone asks us how we handle to the pain everyday and says we are brave. I want to say… No. It is Not okay! But instead I say, ‘You get used to it’ You don’t.

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When we do talk about our pain, we are judged. For the medications we take. For not doing such and such. For being on medications at all.
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How do you get migraines every day anyway? Like, how is that possible? Like, are you abnormal? How about lets just say many people get chronic migraines and leave it at that shall we?

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Then we play a game called lets try to pretend we don’t feel like our brain is being hammered into. Smile for the masses.

 

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Pain day in day out. Poor pain management. makes you feel like you are the only sane one in a mad world. Or going mad in a mad world

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And we think we can handle the pain. Until we can’t.

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Survive

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While waiting for whether my appeal for long term I am in limbo but I am also not working while in limbo. I sued up the remainder of my holidays though. And I would like to say it is a profound relief to not be working when hit with these weather changing migraines at the same time as menstrual migraines. I was in a great deal of constant pain. It was messing my moods up substantially. And the only thing good about it was the capacity to sleep in the next day, because I couldn’t sleep at night and the fact I didn’t have to function through the pain out of the house where it would have been aggravated even more. Just to function with it at all would have been very difficult indeed. The level of fatigue with the pain has been immense.

The menstrual migraines are tapering off. They ended with a bang today though. I tried to treat the migraine with a triptan, which failed. Then I was hit with horrific nausea… and vomited and vomited. So no diner for me. Just too sick to even think about eating. I get a refill of my anti-nausea meds tomorrow.

It is all about survival though. How do we survive. What enables us to survive. Not working is enabling me to survive. Perhaps not financially, at all, and minor so if I get approved for long term… but mentally, emotionally and physically I will survive the pain I am in. And I want to survive. I certainly want to want to survive. When I am working and the depression literally takes over everything I don’t want to want to survive. I want to end the pain. I am still getting anxiety though because I worry about where I will be in a few weeks… surviving… or not surviving. All the compromises we make should enable us to have better lives and survive. Enable us to not exceed our limits. And manage the pain. Then the compromise is worth it. It means something then, even if it is brutally hard to make.

The other side

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There isn’t an other side to the pain. You don’t come out the other side of this hell… there is just more hell there to meet you. But it is a tunnel and maybe someday there will be light at the end of it, we just never know.

But while in our hell tunnel…  well ‘no one can chart that blue and lonely section of hell’ that we go through when we have depression with chronic pain, and we are having a hard time managing the suffering that comes with chronic pain. It is a long lonely road that makes it far more difficult to deal with the pain.

The pain itself is a burden that is difficult to tolerate and endure. Especially with daily intractable migraines. Every single day I think now This migraine is a beast. Then the next day That migraine is a monster of a beast. And I wonder how I can manage to do a damn thing when that heavy fatigue and brain dumbness hit me. And the assault on the senses makes me want to avoid the world. Is this the day I cannot stray from the bathroom for more than ten minutes? Or the day I am blinded my auras? The day I cannot eat? It is a day by day life of inches… crawling through the pain by inches. Get through. Repeat. Get through. Repeat.

Depression though is insidious. It sinks into that pain and it says a life like that? It isn’t worth living. Says you are a burden. A useless burden. It says a life of pain is a wasted, useless life. One not worth enduring. It tells you to lie down and don’t get up. To not strive. To dwell on that suffering and see how horrific it truly is. How mad it is to want to exist with it. Sometimes it lies. Sometimes it exaggerates. But it is the truths that really hit you hard. The ones you try to ignore because you need to survive the pain and not swell on it? Those truths. Depression makes you look at them. Stare at them. And realize how horrific they are.

No one said this was going to be easy. The pain. The suffering. This is not an easy person’s life. Depression stems from chronic pain. It is very dangerous. We need to treat it as such. Delicately work our way through it. Piece apart every thought. Worth through every lie and exaggeration. Acknowledge the truths, but know they are the truth of every single person with chronic pain. Hope that slowly it has less power over our thoughts. Try to distract ourselves when it is strong… when the pain is strong.

And maybe, someday, we will have more control over our suffering. Maybe not the pain. Maybe the pain will always be there, maybe not. But if it is, then at the least we can manage our suffering. One hopes and hopes.

So that out the other side… we have more than an existence… we have a life.

Wouldn’t that be nice? To strive for?

Looking at working facts

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I used to work with a lady with episodic migraines. She would leave work when she had one. And everyone would get this. Accommodate that. Understand it. It is a migraine, you can’t work with it.

There I was with chronic migraines, working right along with her. Unable to go home when they struck. God forbid I missed a day for a severe one even I couldn’t function with.

I get the double standard. I had chronic pain, I had to suck it up. Function. Be there. Just do it. Pretend I was cool with that. Pretend it wasn’t extremely difficult and painful. That it wasn’t giving me suicidal thoughts.

And then there is this…

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High frequency migraines and chronic migraines have the same Impact. On Income, Employment, disability. Increases in anxiety, depression and bipolar disorder. Higher rates of chronic pain, asthma, heart disease and stroke.

We have extreme problems functioning in the work place and it affects our capacity to work which leads to compromises in hours, jobs and whatever we can do and then as a result our incomes suffer. Eventually many of us, those that are daily for sure, find we cannot work at all. And I find a hard time understanding why this is surprising to anyway. Not when everyone knows a run of the mill person with an episodic migraine would Never be expected to work in that pain, nausea, sensory overload, neurological dysfunction. Do they imagine we have a ‘different’ migraine, because we do not. All we have is a way to mask the pain.

Those who can work often find a perfect niche that allows the perfect flexibility, environment and pay for them to be able to function enough to handle it. Others have to work and have no choice in the matter, and they suffer greatly doing so. Others can handle the frequency they are at with the medications they are on… in other words they are not intractable, so have some results from a medication that helps with intensity or frequency.

Some of us are intractable. Some of us have daily migraines. In what world does working make sense with those two facts?

If plans.

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My psychologist wants me to come up with a plan to use for my time since I am off work.

I thought it would make more sense to wait until I am approved for the disability. Despite being suicidally depressed, having FM and chronic migraines ironically this doesn’t necessarily make me disabled in their books. They think surely you can work a job, rather than die. And I think rather would die, or so my brain seems to go when I am amped up by the pain of working and failing to achieve work standards. And then they go I think you are significantly improved, so we are not going to keep you on disability, and should actually work full-time. And I go I’ll give it a go then… a couple months later… yeah I think I’ll try that dying thing instead. The last time I rather thought I’d make it at least three years before suicide was an option again, but not even close to that. I think because I hit the time frame of five years since my last attempt and statistically that is a range where people attempt again. So how very statistical of me. I told them I was suicidal the last time (well they knew since it was after the second attempt), depressed, had FM and chronic migraine and they only approved me for a few months. So hardly a sign they will approve me this time. A sign I have to watch My mental stability for sure. But not a great sign these guys particularly care that I am crippled by pain and depression. Makes me despondent with the process to be honest.

So planning how to use my time instead of working may be moot for so many reasons. Nevertheless my psychologist is the optimist and can’t see why I would be declined. I get it, everyone knows I shouldn’t be working except those in power to make the choice. It is ironic. I could be wrong, one never knows. Maybe it will work out fine and that would be a profound relief. I am tired of thinking what will happen if I don’t.

But I still have to do the exercise. So what will I do with my day?

  1. Housecleaning- I can’t really houseclean when I am working. The fatigue, the pain levels… there is nothing left. And my day off is me laid out recovering with nothing left in me for anything else. So if I am not working I am going to do my Mom’s idea of 10-15 minutes of cleaning a day. I have a lot of fatigue and pain so can’t manage much a day… this is a good daily amount. On a good day… I could try for more. But my min, daily should be Achievable.
  2. Exercise- likewise with exercise I have not been able to do it while working. Can’t exercise on a day off and increase the pain on a work day… too painful. Too fatiguing. So I will start my physio exercises and stationary biking. Stationary biking will be slow again with the FM and EDS… usually 2-5 minutes start and then it is a slow arduous process to increase. Took me six months to get up to 20 minutes. But gotta start somewhere.
  3. Writing- As my hobby I will be writing more. Blogging more and the social media that comes with this. Raising awareness more and maybe I can find ways to do more with that. I also have my fiction writing which I will focus on more. NanoWriMo which is a writing month of November is coming up so that will keep me quite occupied. I have a novel planned out for that and everything.
  4. Meditation- Focusing more on my meditation. Always never found the time to do it when working. There is no time to do it. No place to do it. So I will get into the routine of that again. It is difficult to do with chronic pain, but I think worth it.

And that is all I have so far. Hard to think of things other than the things I am supposed to be doing for my health like the mediation, physio and exercising that I can’t do when working. And the housecleaning I can’t keep up with.