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.

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).

 

 

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.

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.

Victim or Victor

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Do you consider yourself a victor or a victim or migraines? Something to consider. Check out migraine advocate Teri Robert has to say on the subject Victim or Victor?

If you consider what we experience during a migraine attack as suffering and consider Migraine disease an injurious agency, I guess a case could be made for calling Migraineurs victims of Migraine disease. However, I truly dislike the connotations of the word “victim,” don’t like or want to feel like a victim, and don’t want to be seen as one by others.

“Victim” is a word I’d just as soon wipe from my vocabulary. A far better word is “victor,” which is defined by Dictionary.com as:

“As person who has overcome or defeated an adversary.”

The fact is the words we use to Think about our Pain have a lot of power and we need to choose them wisely. Personally I don’t consider myself a victim or a victor. My name may literally mean victory, but I see none here. I am a fighter. I accept the way things are and having to deal with the chronic pain of this particular existence, but I fight to improve upon the situation in every way that I can. Including improving upon the suffering I feel. The depression the pain causes. Every day that I do a routine that that strives to that goal… that is a Victory.

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,