Migraine Awareness Month #MHAM

12.01.19 _ 8AM

June is migraine awareness month. And so with it the campaign to raise awareness about migraines.

You can join in with this social media campaign HERE. It can be run through Facebook, twitter or a blog. Let’s all join in and share awareness about important migraine and headache awareness information.

It is prety important to me. I have had migraines since I was twenty and most of that time has been chronic due to central sensitization. It is pretty comorbid with hypermobility syndrome and Fibromyalgia; I was born with hypermobility syndrome and had FM pretty early as well. However, migraines were a beast that broke the camels back as it were. The pain was relentless. Daily. Unbearable. Unmanaged. On top of the existing pain. And how to cope and treat that has been a long ardous journey it-itself complicated in the last several years Major Depressive Disorder which was recently treated with medication (thankfully).

I am still chronic and may be for a long time, although I like the new research coming out. But I have had some progress with recent treatment that has made the pain much better to deal with. And I have had pain mamnagement at the pain clinic. Treatment for the depression. Things progressed after years and years of stagnation, due to my poor response (lack of) to preventatives and therefore lack of treatment altogether. And my poor response initially to botox. I am doing botox again, as the protocol is different than when I did it… back in the day. Another massive difference, for me, is using the Oska Pulse and external pain device I use for all my chronic pain that has significantly reduced my migraine intensity and somewhat the frequency as well. I was pretty astonished by my progress with this although I know these external stimulation devices are pretty effective. So I am glad I gave it a go. It has made such a significant difference in my pain management lately. (I have a discount code for that if you are looking for a external device yourself. Just type in BRAIN to get a discount). Anyway, as we progress with these treatments, lifestyle changes and supplaments we find methods to cope. But, man, I had like 15 years of pure survival mode. Trying one med, fail, trying another, fail, trying two for one, fail… endless. Wish this progress could have been a wee bit faster. That is not to say it is all easy street as is. With more than one chronic illness it is a constant process. But progress… is a beasutiful thing when it comes to quality of life.

When I reflect on that progress it is pretty awesome indeed compared to where I was at. And I’ll take that.

But awareness is pretty important for that fact. This disease is Complex. The Impact is severe. When I say 15 years where survival mode, I mean it. Not saying I tried every medication on the market… but it felt like it. And non-responsive. That is how complicated it can be. Not counting the complications of symptoms. And those can be life altering. I wasn’t able to drive because of vertigo. Which I am treated with the one medication that Does work, for vertigo (Sibelium… not available in the States). And with progress I am still chronic, just with better quality of life, pain management and coping.

Hey, doc, where is my magic pill?

help with pain

Migraines are unique in the sense that we do often think in the beginning they will be well managed and there is no reason to think otherwise. Likely, we have absolutely No Clue they can develop into chronic migraines. And ignorance is bliss.

And for a bit with episodic migraines they Are well managed. Your pain is controlled. Triptans work well and the migraines are not frequent so certainly, you do not have to worry about rebound headaches, which at the time you likely will also not have heard of.

But as they become more frequent you get in this limbo stage where you start preventatives and use your triptan the max the week. And you Still believe your doctor can help you with your pain. Because these are migraines not chronic pain, right? Surely, they can be managed much easier. No doctor says this is chronic pain and this is no longer easy to manage. And, hell, that would have been a realistic thing to say. Because it is. You can go back down to episodic and then it wouldn’t be chronic pain, unless it was high episodic which has the same impact. But let’s say you went right down to low episodic well then it wouldn’t be chronic pain anymore. But until it does… chronic pain. Until it does, it is complicated.  And because they don’t come out and say it for this limbo period we think this can’t be that bad. It can’t get worse. I’ll take the preventative and it will Substantially improve.

But it doesn’t because no preventative substantially improves anything. Best case 50%, which sounds awesome but is a rare result. And if you are daily, 50% still means chronic. So pretty complicated. You add in vitamins, lifestyle, exercise… and whatever else you need to add it, or try, or try again just to see if something works. Anything works. And at this point, it becomes pretty clear your doctor isn’t going to help much with pain management. And medication alone isn’t going to be the end all of treatment.

In the end, pain is always more complicated than we initially think.

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?