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.

Limitations

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My doctor is pretty adamant I should work from home or, at the very least, in town. Due to, yes, the vertigo. Which seems to have a bit of a mileage meter on it. Ten minutes of drive time and I am fine. Over that and it is pushing it and will generally trigger mild, moderate to severe vertigo. The more I do it, the worse it gets. One of the reasons I had to go on leave was it was getting to the point bouts were severe and I couldn’t, in fact, drive to get to work.

This is a problem for me. I tried to do as she said. I looked and looked and looked some more. I applied. And nada came of it.

It is a pickle since there isn’t actually any way to treat the vertigo. It is vestibular migraines and that is that. I have tried preventatives in the past but my response record to preventatives is pretty nill. Botox is working well for me though, just not for vertigo. Just for intensity of pain really. And neck pain.

I am short on time for a solution though. There may simply not be a viable one.

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).

 

 

“13 Reasons why” was not for me

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I got right into this series and watched it like crazy. I knew it was about suicide but I watched it anyway. I shouldn’t have. I can read a book about suicide and I am fine but visually seeing a suicide scene and aftermath… it hit me like a fist.

I remembered my first suicide attempt. It was from pain and depression from pain. Like the show, I cut into myself. Watched myself bleed because I wanted to see the life flow out of me. I wanted the violence of it. Chronic pain has no blood. You suffer and suffer but no one sees the wounds. I wanted the wound to show in my death. No one should have to suffer that much pain and function. I knew that fundamentally. I thought it was cruel and madness. And madness for me to particulate in it like it was okay to do that to a person. I felt useless and worthless at the same time. A burden. And I didn’t want to be one. I knew people would mourn but I knew they would know at least I wasn’t in pain anymore. You have to be in that headspace to truly know how deep and dark it is. But with the relentless physical pain of the moment tormenting you, all you want is it to end.

All that untreated pain. That overwhelming depression. I’m amazed I survived as long as I did.

When you survive an attempt it is traumatic. You see the impact. And that you see in the Netflix show as well. The mother finds the body and the father comes in and it is a devastating scene. You see their suffering throughout and know you too could have caused that. Surviving you know the impact you could have had. You see the effects on your family. See the fear and worry. I again felt that impact and worse felt how much worse it could have been. It was like a punch to the gut.

The show just was like a flashback. Of pain, of the trauma, of the impact. Of how hard it was after to reconcile not wanting to hurt those I love in such a brutal way and not wanting to survive with the pain. I couldn’t. Someone always suffers. I read somewhere that suicide is like a bomb. It takes out the person but the shrapnel wounds those around the person. The closest get wounded the most but those not as close also get wounded. The suffering is widespread. How does one reconcile a life of suffering or passing all that suffering on to a group of people?

Anyway, I loved the series in regards to bullying. It shows the impact one’s actions and words and inaction can have on another’s life. Something teens should think about. It doesn’t focus on the mental illness aspect but you can see the signs of depression plain as day. The isolation, she cut her hair, stopped hobbies, her poem, talked about numbness, the suicidal thoughts and long insomnia walk.

It is just not something I should have watched. I have been out of sorts all day. Listless and sad. It re-hashed something that was very traumatic for me. And layered it in a devastating storyline that didn’t hold the punches. I felt for her. I felt for me. It reminded me of a very dark time for me.

I am still depressed. Depression 2.0 I call it. Because I am treated with Abilify which takes away my Plummets of Doom. The Deep Dives into Despair. Evens things out. But I still have this softer depression. I no longer have suicidal intent. My brain has a switch. With depression, you keep fighting to a point. And then Switch, you don’t. You give up, curl up in a ball and wish it would all go away. And become vulnerable to suicidal thoughts.

Watching ’13 reasons why’ was good, disturbing and so very sad. It will hit everyone hard. As it should. But if you have survived suicide it may just hit you harder. All the memories may come to the surface again. I am not saying it is a bad thing. I don’t hide from my suicide attempts, I regularly talk about them. I want to end the stigma. I want people to be able to talk about it. Maybe showing such a vivid scene will help with that. But someone who has been suicidal, is depressed or has suicidal ideation there really ought to be a warning on there for that. We see a lot more in there that others do not. And then we reflect it back on ourselves. I’d say better to want with someone you can talk to.

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.

 

Migraineur Monday Musings: Just a headache

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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.

Accceptance therapy for migraine?

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Pain Acceptance Linked With Reduced Disability, Pain Interference in Migraine

Migraine sufferers often avoid triggers and activities thought to precipitate migraine. In line with the fear avoidance model of pain, however, some findings have shown that avoidance can lead to headache disability by reducing pain thresholds and preventing pain habituation.2,3 In addition, psychological factors have been found to have a greater influence on the fear-avoidance cycle than symptoms like headache severity, suggesting that targeting such factors in patients with migraine may improve outcomes.4

In contrast to avoidance-style coping, pain acceptance consists of 2 components: pain willingness — the recognition that pain avoidance efforts tend to be ineffective — and activity engagement, consisting of participation in life activities despite being in pain.5

This study was looking at overweight women in particular with a BMI over 25.  There were 126 subjects. They found there was reduced headache disability with acceptance and less disruption there was in their lives. It is limited due to its focus but the idea is that acceptance therapy is beneficial with chronic pain and may very well be with migraines as well.

This is a strategy my psychologist takes. You should engage in life because you will be in pain anyway. You should do all the strategies to manage that pain, but also not avoid interaction, social activities and other things due to pain that will always be there.

I find it a lot more difficult with chronic migraines than say, when I only had fibromyalgia. The Limit is a harder line. You see you can’t exceed your pain limit and push through the pain all the time. For me, that lead to depression and suicidal ideation. Loss of hope. Too much suffering for coping strategies to encompass. For that reason, my pain psychologist acknowledges that working full time is impossible for me. Working part-time is likewise very problematic. When I exceed my pain limits and try to function like that, and fail to function, I cease to want to thrive and exist. Clearly counterproductive to coping. So you have to acknowledge that pain has limits. You can only cope with so much. Only function with so much. Acceptance or not, that is a Hard Line.

But chronic migraines are chronic pain and we do have lives to live. We cannot hide in our cave every time we have a migraine or we would be in there every day. We do have to do things with migraines. Even socialize with them. Do housework with them. Go for walks for exercise with them. Limited errands with them. Just not with pain levels at 8 or above. We are limited by our pain levels and, therefore, the lower functionality that comes with those levels.  Likewise, we can be limited by bouts of vertigo, vomiting, and diarrhea. And we can’t push those limits without risking our mental health. In the 6-7 range with have lower functionality and can do limited housework and limited errands and limited socialization. Not on the same day. But we can. It tends to make the pain worse. Aggravates things. Sometimes so much worse you have to leave early, get home as soon as possible, or immediately stop what you are doing.

Acceptable with Fibromyalgia is a lot easier. You pace, moderate and stay within your limits. Rest on flares. Self-care on flares. But the rest of time just ensure you pace, rest when you need to and never exceed you limits. You can live a well-rounded, mellow and careful life. Mind you mine has gotten worse over the years but I still follow this and it works well. Migraines, daily, on top? A lot harder process. Pacing means nothing to migraines. They come on regardless if you pace. Pacing doesn’t prevent the pain from being worse or better. It just is.

So we can have acceptance and try to live our lives within the capcity we have. It is just limited capacity.

 

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.