Migraineur musing Monday: Plans

Life is 10% of what happens to us and 90% how we respond to it..png

You ever notice with chronic migraines plans become tentative inclinations instead of set deals? People invite me to events on Facebook and I am ‘maybe’ because I don’t know what sort of migraine hell I will be in… or if I could have tempered the storm adequately enough to enjoy said event.

Maybe you will see me. Maybe you will not. Yes, I am very aware this is ludicrous for some events and I have to be specific in some cases. But I do love flexibility.

No one wants to Cancel plans. I have, though. Hell, yes, I have. I have every intention of going somewhere and damn well enjoying myself and when it comes down to the minute I am in the midst of the high pain zone or the otherwise can’t leave the bathroom sort of sick migraine symptoms.

So I like it when I Can be flexible and I love it when friends accept that I actually have to be flexible. It does make for some vague social inclinations though.

Hibernation

Feeling cabin fever but in too much pain to drive or leave the house (2)

With pain comes isolation. With winter comes hibernation.

I see a psychologist for pain management who is rather insistent I socialize more. Good for mood. I on the other hand, have a hard time of it because every time I do something the pain just amplifies. And I have a hard time enjoying that.

He asks me, after not seeing me for three months ‘Have I been getting out more?’

I reply, ‘I went out of coffee with my mom, went to play cards with friends and went out with a friend one night.’

He says, ‘Three times. You remember three times.’

I laugh. Yes, indeed that is all I remember. Unless doctor appointments count. He said, no, no, they do not. But it is winter and it is not exactly encouraging for socializing for me. Not to mention I am introverted and once a month is actually cool for me. And with the pain, this seems a practical amount of time.

When I was in University freshman, back in the day, I did socialize a lot and I suffered for it. I couldn’t keep up with everyone else. I ended up taking a year off and when I returned I modified my social time to once every two weeks. Some of which would be at home with friends over. And this modification was a vast improvement. This was pre-migraine though. Once the migraines kicked in I modified that again. And then I went all out hermit for a bit in order to try and maintain some semblance of work, with no energy to spare for Anything else. And now I am up to once a month, or once every couple of months. That isn’t all our hermit. Considering my everyday pain levels I think it is pretty impressive really.

He is really into this idea. I am really not.

I suppose I would be if the migraines were not daily. My body would reconsider the idea then. As it is, I am tentative on socializing. Restrictive. And careful. I understand his notion. I will be in pain anyway. Might as well have a life. But I think he fails to grasp just how magnified a migraine can get in certain environments that are not controled. It can be downright aggressive. There is potential on triptan days, of course. But aggravating the brain on a triptan day pretty much guarantees the migraine is going to come back. Still, I have used the triptan ‘window’ to socialize.

 

Reading: a pain distraction

Reading for too long can be a problem with people with migraines. It can also be impossible to do once a migraine is triggered..png

Reading is my escape from pain. It is the best pain distraction I have. Along with writing. To get sucked into another world for a little bit, helps.

Some people cannot read at all with a migraine, but I cannot let that gift be taken from me. I cannot. I refuse to.

I noticed though if I read a lot… a lot, a lot, as in for hours I will make the pain significantly worse. So much so, I really do regret that. So no reading marathons for me anymore. Sadly.

And when the pain is very high, like a high 8 or 9, I cannot read. I lose my capacity to focus at that level.

So we are looking at a 6, 7 or low 8. Not non-fiction. Often fluff books that do not require much thought the higher the pain. So a good day I can read whatever I please. A bad day I have to read some fluff romance.

But I need to read. It is a fundamental part of my personality. It is fundamental to my nature. To my very me-ness.

It is one of those pain distractions that is touch and go with us. Some of us simply can’t. Some of us can under certain conditions. But it is a strain, like the computer, and it will increase the pain the more you do it. Which is unfortunate. I never read on lit screens, as that would be far worse. I read either actual books or a regular kindle with the matte screen they have.

Of all the things it has taken, it hasn’t taken this. Thank all the gods for that.

Can’t be that sick if you smile on Facebook

swollow-pill

This is the case of someone’s medical claim that was denied because of social media.

We all know social media is a reflection of life right? What? No? Oh, right it is a reflection of all those little slices of happy moments we post. And weirdly enough we smile in photos. Not sure what social norm that is, but we do it. I have gone to social obligations and dragged my but there in too much pain to even enjoy myself and then smiled when they took a picture of me. I guess I shouldn’t have… if we are taking pictures of Reality here.
Continue reading “Can’t be that sick if you smile on Facebook”

Looking at suffering: how to manage

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The thing about chronic daily migraines is the suffering. Can’t escape the suffering. Chronic pain research is in its infancy but one thing they know is when we feel pain that pain information in the brain also goes to emotion centers. So we have the sensation of pain and we have an emotional response. We have suffering. They go hand in hand.

That means with chronic pain we have to find ways to manage our suffering. Personally I suck at this. I suck balls at it. I am not a overly negative person. More a realist but when it comes to pain I am negative. I find a life with pain to be a limited existence. On my dark days I wonder if it is just an unlived life.

So for people like me who develop depression associated with pain. Well, we have to look at the thoughts that come up when we are in pain and suffering to see if they are rational and reasonable thoughts. Because pain and depression both distort thoughts. I will be in pain FOREVER. I will NEVER feel better.

Here are some examples:
Continue reading “Looking at suffering: how to manage”

Celebrating, best done carefully.

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Celebrating, best done carefully.

It was my birthday on April 28th and I went out to celebrate on the weekend.

The bottom picture is my slightly inebriated selfie to show my age of 39. I was going to tag it ‘no-make-up’ but then again everyone knows I never wear make-up so there would be no point in that. I had very sensitive skin when I was younger and by the time they came out with products I could use, I was pretty useless at that whole business not to mention not liking it on my face. So I don’t really participate in that whole thing. It is not that I feel like I am old… it is more like celebrating I made it to 39 at all. Having had suicide attempts under my belt. Sort of Yay survival. And I also thought why not take a picture of No-Sunglasses. There is a rare one. Every migraineur knows pretty much every picture is a Sunglasses on picture or tinted specs picture. Anyway, that would be me. In the top left is my common-law spouse being a goof… so I took a picture of him. And now posting it so others can see that he is a goof. 🙂

Celebrating with migraines generally for me is a mellow thing. We tend to play cards with the two friends depicted in these pictures. A game called sticks or Cards Against Humanity. It is indoors, quiet and a mellow adventure. They can drink but I certainly don’t have to indulge. And it is the sort of socializing that my brain can totally get behind. I always go prepared. Sometimes I have to leave early but not always.

Sometimes though we go out to the bar because our friends love the karaoke. As an introvert you wouldn’t catch me singing in front of people. Sounds horrific. Like some sort of torture. By they enjoy it and we are there for moral support. This can be a bit harder for me. I have to go on a good day. I have to be prepared. And if I drink I have to alternate beer with water to stay hydrated. As far as I can tell I can’t handle any other sort of alcohol, just very light beer. I have a limit though. A few beers is fine. Moderation and all. More than a few and a migraine of immense intensity will be the result. But I am fine with moderation. And this is what we did for my birthday. It was a fine night of chatting and socialization. Laughter and singing. As usual a few drinks has the added perk of really helping me sleep so I tend to wake up migraine free, which is always nice. I know they say alcohol makes for poor sleep but they must not mean for people with immensely poor sleep to begin with because I sleep like the dead.

And I’ll tell you a secret I rather like about being 39 opposed to being, say, 24… people let me moderate and I don’t feel guilty about it. When I was in my twenties everyone was partying hard and I was left behind and left out. It was depressing. When I tried to keep up, well, I suffered immensely for it and learned every single time what a horrific mistake it was to do that. I began to become more of a hermit because I just felt like I couldn’t keep up with anyone. The pain wouldn’t allow it. And no one would change their activities to suit my pain. Not saying my 20’s wasn’t a blast though, because the migraines were not as frequent. And I did have a lot of great friends and great times. Just couldn’t keep up with them. And I was very aware of this fact. Now, well, I have my pain but people are all grown up and have obligations, responsibilities and bedtimes. My moderation and pacing fits in with a parent having to wake up at 6am to drive a child somewhere… and it works.

And then there will be the big 40 next year… I hear the 30’s are horrific for migraines and certainly that has been the case for me. One never knows what the future will bring.

I am migraineI am shrouded in shadowsAnd hidden in caves.You yearn for the light.But you are my slave.Want to fight_I dare you.Go into the light

I went out to Olive Garden today with my common law spouse, mother and step-father for my early birthday dinner. I was on the cusp of a migraine when we left and, of course, a roaring on when we came back. I often blame the light. Or just leaving the house. Just seems to strive as soon as I want to Do something.

But then again I have daily migraines and I will get a migraine. When is the question. Early or late.

Often people have anxiety about this. When it will strike. When they are out and about. If they are going to be doing something important. This isn’t a problem for me. I don’t live in anxiety about when I migraine will occur. I figure they will happen when they will happen at the intensity they will happen and I will then deal with it in the capacity I can that day. As in if it is a day I can take a triptan, or a day I cannot.

This is the way to go. Why worry about the impending doom? It will happen or it won’t. In my case 99% chance it will happen. Just a matter of what sort of break I get before hand. Or I suppose to be honest how long the prodrome lasts for.

However, we all have times where anxiety of a migraine happens. Twice in my life this has happened to me. The first was the day I was to defend my Masters thesis. I worried I would be dumified by a migraine and be unable to properly defend my thesis. That definitely created some anxiety. I was chronic at the time but only about 15-20 a month, so there was a chance I would not. But as we know, stressful situations when we do not necessarily pay attention to food intake or hydration and Bam migraine. Or stress itself is sometimes considered the trigger. Either way, I did in fact get a migraine. However instead of the dumification I got the hyper excitability instead. Where you are all shaky, talkative and hyper. I call it my manic migraines. I assume it manifested this way due to my anxiety. I have a fear of public speaking you see. So during the prodrome and the pain I was able to actually function well enough to defend my thesis quite well. Given my terror of public speaking maybe even better than usual. But the pain after was quite intense.

The second time was pre-test anxiety for a RISR mutual fund test for work. I actually never have test anxiety, but since it was job related and at that time my migraines were quite a bit more severe… due to working, I had anxiety that a migraine would impair my capacity to succeed on the test. Given the math involved. And migraine. Again. I should not have worried.  I am just one of those people that tests exceptionally well. But migraines do impair me math wise. I know this from work. Transposing numbers. Brain fog. Just forgetting simple equations. I once did an IQ test with a migraine and it dropped my IQ from 140 to 135 (It was just an experiment and the migraine was by no means a 9)… and I assume it was the math to be honest. I remember sort of zoning out on those questions. So you can see where test anxiety would be a factor. In university I never had a problem, except when they put me on certain medications and that rather ticked me off when it affected the quality of my work.

So there will be times when anxiety of that next migraine will be a factor. Especially when we know we Need to function and we will be stressed. The reason anxiety is not normally a factor for me is because I do have to function ever single day. I have worked full time for over a decade with chronic daily migraines. So I know I have the capacity to function when I have to, to some extent. Obviously it impairs us. The more pain the more impairment. Just a fact. I generally become slower and double or triple check my work. Try to be as meticulous as possible. And still make odd little mistakes. Have issues with general communication. Forget simple policy issues. For that reason alone I am glad I downgraded my job to something simpler and less stressful to be honest. But I have the capacity for limited functionality at a 7 level of pain, and even barely functional at an 8. So there is no anxiety of getting a migraine. I wish I would not. I wish I would have a break. But I deal with it as it comes. I only have issues with 9s because of the incapacity to function and then I am sort of stranded where I am and suffering a massive amount in the process.

What we should really be doing is just living our lives and always being prepared, no matter where we are, for that migraine. Having that migraine emergency pack on us at all times and medications. Never leave home without the essentials. So maybe you will have to leave early from a social gathering but don’t let a potential migraine stop you from going to it. I deal with chronic migraines like chronic pain, like FM. I don’t let it stop me from doing the things I want to do… within moderation and my limits. And I am always prepared. I know there will be pain, but to some extent, I will deal with that pain. Because there will Always be pain. And I cannot just avoid life.