June is #migraine Awareness Month #MHAM

 June is the beginning of migraine awareness month. During the month there is a blog challenge that I participate in every year that I will begin to post on.  (migraine.com awareness link)

Blog challenge if you want to join is HERE. It is not just for a blogging challenge either as they have Twitter events and a photo challenge as well. Great ways to participate in migraine awareness.

#Poem: Brain Haze

Brain Haze

Lost my mind today
Pain distorting reality
Brain beginning to fray
There goes my functionality

Pain distorting reality
How to comprehend?
There goes my functionality
Brain haze descending

How to comprehend?
Brain beginning to fray
Brain haze descending
Lost my mind today

This is a poem I wrote about brain fog which is an issue for fibromylagia, migraines and chronic pain. In fact it seems to be one of those symptoms that comes along with a lot of chronic illness. I suspect due to sleep issues and fatigue. Some of the things we can do about it in fact are to get good quality, regular sleep... easier said than done. Keeping regular routines because habits help us remember things. Staying organized and in that line of thinking using methods that assist us with organization such as writing things on a calender, using apps on a phone and whatever else assists us. Also eating regular meals can also help with mental fatigue.

It is not always easy to manage though. Just seems like thoughts and words slip through the cracks. Everything becomes all muddled and it is like thinking through mud. I find myself often using the wrong words and sentences come out all wrong. I have a difficult time expressing myself. It is extremely frustrating to me. It would be a great deal easier if I could just express myself using the written word all the time since I have an easier time of it but even there the world is full of typos.

#Playing and #paying

In many ways reality and I are not well suited for each other. This reality is too loud, too bright, too full of odors... and my brain loathes it in its entirety. It grates on my oversensitive nerves and spikes up migraine after migraine after migraine.

And you think maybe if you just avoided stress. Took it a little easier. But this world does not allow that. You must be absorb into its fast paced society or you are a liability. But I cannot keep up and I just get worse and sicker.

It makes me crave silence and solitude. Something to sooth my cracked soul. I need a deprivation chamber to soak myself into every day just to give my brain a rest.

It is such a contradiction. I want to go a play with the other children, but I cannot handle their games. I need to retreat and hide to feel better. If you play, you pay and pay and pay.

Had a #Sick day

I have had a rough few days off. I have been just right sick. Nauseated. Vertigo. Have not really been able to eat and somehow managed to lose five pounds in the process, but since I have been rather ill I suppose that is not that surprising.

I missed work today and that makes me uncomfortable. Not because I was ill, but because it was the first time I missed work since I have returned. The first time I have missed work with this current manager. Makes me anxious. And I feel guilty about even though I was so ill. Even though I would have had some serious issues working like that... unless there was a bathroom two feet from my office. Hell if I could have just lived in the bathroom all day. Because that is what I did.

I suppose now that it is late and I am now in so much pain due to being so ill all day, I am now upset over it more. It is just a sign of unpleasantness. A sign of non-functioning. A sign of being unable to physically cope with the stresses of work and how they affect my body. The lack of control I have over that if it is in fact the case.

You know just feels like the pain is just waiting to steal my tomorrows. Just a whisper away. I know what it is like to hold onto work long past when i should. It is never pleasant. It is an ordeal no one should have to ever endure. But we do, because we must... for many reasons often but mostly just because we have to live and earn money and it is necessary.

So I feel drained, sick and in pain and finally my mood has tanked with it. Wondering how this is going to even be possible again. How can I maintain?


I know with chronic pain we are expected to be functional with pain. I remember in the pain 101 class he had talked about how we should not stop living our lives. To a point that is true. We should not stop socializing. Being with people. Doing things we enjoy. Being in the world.

But to a point. To a point.

Beyond that point there is something horrifying in that word functional. It says I have to repress all this pain, smile and try to just push through it while trying to work. It is a cruelty. It is a torment. For all the good things there are about work. For all the enjoyment I take from from doing it, I cannot seem to get past the cruelty of having to try and function under the increased intensity of pain.

I think the primary reason is is that because it exceeds my pain tolerance. So I lose my capacity to live other aspects of my life. To socialize. Being with people. Doing things I enjoyed. Being in the world. It all shrinks to getting through the pain. That seems wrong to me. So very wrong.

I think that means I am not functional at all. Generally when I go on like this I prove it too. Because you can't go on exceeding your pain limits for long. It gets to you. You crash and burn.

#Painful #consciousness

I know there is no coming to consciousness without pain. We all have pain in our lives. But I would say for me there is no consciousness without pain. I am conscious. And therefore I am in pain.

I have not blogged for a few days and that is in fact because I am in a crapton of pain. This whole working thing is just... significant. It is not just that it is triggering my vertigo, which it sure the hell is. It is amplifying and extending every migraine. This current one is two days in a row of upper level 8 to 9 level pain. I have been physically ill with it. Unable to really even eat. I thought I was getting sick, but, no, just a horrific migraine. There is not an inch of space from the neck up that does not hurt like hell at this point. I have tried my triptan. Failed. Painkillers... not remotely strong enough. So I suffer.

A abhor people who diminish the significance of this pain. Like the insurance company that cleared me for work when I had not improved at all. Those sorts of people. It is just headaches, right? So many people do not comprehend the extent migraines can get to when they are chronic. That they are an attack. An neurological event. That they can last from 4 hours to 3 DAYS. Unless they go status, in which case, even longer.

I used some banked time to leave early today, because yesterday I felt so violently ill I thought I must be getting sick. So I thought I would use the banked hours to leave early the next day since no one likes to work sick. I am glad I asked to use them. I needed it. The pain was ripping a hole through my brain at that point. No one liked to work in that sort of pain. And this is what is expected of me. I am not sure what is to be done about it. I will have to think about it seriously. Very seriously. If things get worse, as they tend to do, I will end up in a place that is very familiar to me. A hell I do not ever want to experience again. I just cannot go through all that again.

It was not a mistake to try and go back. I had to find some sort of job might as well go back to what I was doing and then assess what I needed to do. The mistake was on the insurance company stating that I was 'significantly improved' in the first place. They are the ones that were wrong here. But that is because they don't want to pay. So they will get out of paying. And it wasn't a mistake to try again. We can make changes and hope that our coping is strong enough to handle the significant change of going back to work. But in such pain today and yesterday, working, and I just didn't want to be there suffering like that, muddling though things and trying to think straight. If it was lower pain, fine, I can work through it. But when it gets up there, I am really not very functional. I can't even say people's names right.

I have some days off so hopefully the pain will subside to its normal migraine strength and give me a bit of a break. Before going back to work and having it rise back up again.

#‎May12BlogBomb #Fibromyalgia Awareness Day post

I have had Fibromyalgia, officially, since I was in my early 20's and I just turned 38.

Our Theme for the BlogBomb this year is: "A Vision for the Future!" Perhaps the angle of how your future would look if you were free of illness from tomorrow 

If I were free from illness tomorrow: I would continue to work, but I would work pain free without the additional concentration problems. I would then begin to let my ambitions have a role in my life again. I would plot where I wanted to be in five years. Where my career could take me. I even know what that goal would be. Then I would begin to take classes I know would help me achieve this goal in five years, or less. I would also begin to save money for a awesome vacation. One I could never do before. With a lot of sunlight. Lots of activity. Maybe going to Mexico to look at the Mayan temples. On my days off from work I would make time to socialize with friends, go out and do things and Still get my housekeeping done.

A vision of the future as is: my vision of the future as is is a little different. I want to try and maintain at work and I hope that I can. I strive to do so. That is my only ambition to maintain at my job. Get to work, do my job, get home and relax. Just that. I foresee being able to do this a year before it becomes problematic due to a medication wearing off or the pain getting out of control or the vertigo going nuts again. Then I will struggle. From there it is hard to predict what will happen but maybe another leave of absence, of which I have had many and just came back from a long term leave. Maybe it will lead to another demotion and then wait for a bit until a promotion... I did this whole demotion after a leave and then promotion after a certain term game a couple of time. With a chronic illness it is not uncommon for us to not make as much due to leaves, lack of raises and promotions. And I will struggle like this until retirement or until I succeed in getting permanent disability. I do take small short vacations to places close by where I can relax, like into the mountains. We stay in a cabin because I cannot handle tenting as it is too painful to sleep in one. Or to my uncles cabin. I socialize occasionally with a close group of friends who understand my limitations and we play cards, something that is in my capacity to handle. Other than that I am a hermit.

Out of the depths

People who overcame things in their lives have a depth to them over people who have never struggled at all, or very little.

But for some of us I wonder do we ever find our way 'out of those depths'? When our pain is consistent suffering? Consistent struggle?

I have in the past described chronic pain, chronic migraines in particular like being in an ocean far from land. Almost drowning at every moment as the waves surge against you. You just struggle not to drown. Sometimes you may want to give up and just drown. But you keep struggling to stay above water.  Sometimes you swim because you are sure there must be a shore out there somewhere, but you never find it. But you hope. But mostly you try to keep your head above water; neither drowning nor saved but in some sort of limbo hell. We are immersed in the depths so far there is no other side to see.

I am sure if there was an end to this tunnel, coming out the other side we would have one hell of a story to tell. But we are held in limbo by the pain. Suspended by it. Neither defeat, nor victory. But, yes, we know struggle and suffering. To an unnatural degree that is not counterbalanced as it should be by ease and joys.

#May12th #fibromyalgia Awareness day

There has not been very many interactive raise awareness events that I have seen. No blogging events of that sort of nature. However, here are some links to check out. Two webinars which are always good to check out... we can never usually catch talks by these people so it is great to have a chance to hear them talk.If I hear of anything else I will add it. Let me know if you have heard of anything as well.

  1. may12th.awareness on Facebook  to check out events from around the work including light up the night events.
  2.  fmcpaware.org Awareness day check out this FM site for awareness event ideas.
  3. "Topical BioMedics is hosting its free monthly pain management webinar on Tuesday, May 12th, focusing on the topic “What You need to Know about Fibromyalgia.” The webinar will be streamed live from 12pm to 1pm, then archived and accessible on demand 24/7".: (  http://www.prweb.com/releases/2015/05/prweb12704109.htm)

  4. 2015 International Awareness Day Educational Event ME/CFS and FM. Speakers Rory Hornstein, RD, BEd, and Lucinda Bateman, MD. 6:30 to 8:30 live or by webcast. (http://www.eleanorsteinmd.ca/wp-content/uploads/2015/03/May-19th-detailed-information.pdf
  5. Thunderclap mass Tweet or FB message
  6. #May12BlogBomb  is a mass hashtag event to blog about FM, the link here brings you to the event creator. 

Emotional wellbeing, good days and bad

Here is to being authentic. Actually I take pride in that trait and value it in others as well.

However, when I read this quote I thought about chronic illness and the way at times when I am in just the right frame of mind I can frame my struggle in a positive manner. Then things like 'overcome' and 'endure' and 'transform' and being 'greater than my suffering' are all things that can come to mind. Along with perserverance and patience.

Because we have positive coping traits. We can talk about all these characteristics of how we cope with illness that are positive in some way or another. The illness itself is not enjoyable, but we have adapted in certain ways, that are in fact positive. On these days I feel like I have made some sort of progress or achieved some sort of balance. I feel in a good place, despite my pain. I feel like pain is not stealing my life from me. I can look objectively at my life and actually see what I should be grateful for. I can be creatively inspired by the pain itself in fact and have been. And really I feel like my part history with my chronic illness at least has given me experience to cope with my current state of being. That I would never be able to cope with the pain as is without learning as I have in the past to cope as I have. And each of those coping strategies has a lot of value to it.

However, on my bad days, I sure can point out all the negative characteristics of chronic illness and negative coping strategies and all the sucky things that go with this. Some things just are not positive. Hell... 'endure' is not positive when taken 'forever'. Then it just bites the big one. While sometimes I feel that I am greater than my suffering and pretty much take things in stride... other times I am just a big ball of suffering and it can really just get to me. Pain can steal my cool. It can steal my energy. It can steal my sleep. It just takes and takes and I feel like an empty shell walking around wondering what happened to me. Pain generally makes for more bad days than good. It just makes it harder to see the good. Which is why I feel we have to consciously make an effort to raise our moods, because it is just so easy to fall into a negative state of mind or even just a pain hazed one.

I don't really feel we can make ourselves be happy. Or that thinking warm fuzzy positive thoughts is that beneficial. However I have read enough studies to know with chronic pain and chronic illness maintaining our mood is difficult and worth the effort. Something I constantly struggle with.

There have been a lot of things I have read. Like if you smile, even if you are not in the mood to, your brain still releases happy hormones... so even faking a smile can boost your mood. Which is why I always find having a facade at work where I can smile and joke around lifts my mood a little. Whether it is because I am convincing my own brain I am in a good mood or providing some necessary distance from my own pain, it is something I find necessary. But other things are things like exercise... even taking a short walk. Watching funny videos every day... like funny cat videos and such. Starting a gratitude journal and writing down at least one thing you are grateful for each day. This is because for every negative thought we have it takes at least three positive to replace it, so at least thinking about and writing down one positive thing a day will help boost your mood.

There are actually more things likely than this. Little fuzzy headed today. I work on a lot of cognitive therapy as well. So actively replacing negative thoughts with more rational positive thoughts and thinking about those negative thoughts and why they are not rational thinking. Just to help with my emotional health. There are a lot of things we say to ourselves with chronic pain that get skewed by the pain. I have posted about this before. (Here is an article I wrote about that for reference: Chronic pain and cognitive therapy: taking care of your emotional health)

Vertigo trip

The last couple of days I have had bouts of moderate to severe migraine associated vertigo at work. It disturbs me because if it gets worse, well, then it will be triggered by driving and then prevent me from driving.

As it is I cannot determine the trigger right now. Could be the drive to work. Or it could be the hormonal migraines right now, which are the most severe of migraines and tend to have volatile and violent symptoms as well as all day migraines. If it is the hormonal migraines, I believe it is not an issue because only a small section of the month with the potential for a problem. If it is the motion trigger, that could become a serious issue. The medication I am on, Sebelium, which is a calcium channel blocker is what is currently presently every day vertigo and severe long lasting bouts of it. I am aware medication can and does stop working whenever it pleases, but I have not been on it that long.

This vertigo is very unpleasant though. It is a combination of drop attacks, which is when the floor just 'drops' beneath you suddenly and you lurch to the side and also this spinning disorientation. Just standing was a problem, it felt like the ground was constantly shifting under my feet and the more I stood the more spiny I got. So I made sure to sit down as much as possible during the bout, but even so, still felt the chair moving and my body shifting and this sense of disorientation.

Vertigo is a real problem. It is very hard to treat. Not very responsive to medications. The bouts can last for indeterminate durations. It is very easily triggered by motion... and also made worse by motion. So if it is triggered by driving, then it is also made worse by it. Which means, if I trigger it by getting To work, then it will get Worse by the trip back home. This I have experienced before my long term leave and it was not a good experience. The vertigo was triggered on the way to work, was severe, I was quite ill and then on the drive home went Insane and it is only because I didn't swerve that I remained in control of my vehicle when I suddenly went on a rollercoaster ride from hell.

Today it was about two hours long of a bout. Yesterday about three hours long. So short durations. But severe. And lingering mild vertigo. Like right now, still have mild vertigo lingering. So essentially I have had vertigo for two whole days. I tried taking motion sickness pills to see if that would help. Nada. Ginger. Nada.

tired of the pain today

I've had a couple a really bad, exhausting pain days. Reminds me how difficult it is to work through to be honest. Not that I needed the reminder. I just hope it is not something that will be the status quo and just a bad stretch.

I find it extremely difficult to do my physio and exercise while working. I always have. There is just so much pain tolerance. Just so much energy. The fatigue really gets to me by the end of the day. By then the migraine is also in full swing. When I was not working I exercised Prior to the migraine starting.

The meditation helps though. Partly it just helps relax me and that I need. But also it seems to loosen the pain up a bit.

Still when I think of all the years before retirement... I am so very tired of it all. That is a hell of a lot of pain. What a raw deal people with chronic pain get, eh? I get all the things we have to do to help cope with it. I get that it will never go away. Yada, yada, yada. But... it sucks balls that this is the case really. And that some of us also have to work like this. Or have other obligations like being a parent. I mean, we can do it. Not saying we can't. I got my Masters with chronic pain. It was damn difficult but I did it. It is just that. Everything is so much more difficult. More exhausting. Harder to focus on. Harder to enjoy. Forever.

I sometimes think what it feels like not to have pain. And I think it must feel like an absence of sensation. Like a lack of awareness of your body constantly. But you know, today I just think it must feel lighter. Easier to focus. Have clarity of thought. And maybe feel like a good tired from exertion but not this endless drained fatigue feeling. I don't think normal people enjoy things more... but they Should. Because all those small moments of the day worth enjoying can be felt without the constant pressure of pain to distract away from them. But we all feel stress, so we miss them. I try to focus on small good things just to lighten my mood because pain can depress me.

Anyway, it has been a long three days. I am just very tired from the constant migraines. Not to mention the FM pain in there too. I aim to sleep 9 hours tonight to kick this migraine.

Video: Conversations that Matter - Working toward chronic pain solutions for Canadians

Video: Conversations that Matter - Working toward chronic pain solutions for Canadians

This week Dr. Brenda Lau looks at the chronic pain 20 per cent of adult
Canadians face. She discusses how to assess and manage this pain and why
chronic pain sufferers can't find solutions within the medical system.

Maintaining consistency... is a good goal to have

Don't take this as pity, but fact. Chronic illness has taught me to really decrease my ambition and I am the sort that creates goals and has ambitions. A person at work asked me about my career goals and I told him flat out after coming back from a long term leave of absence I was looking forward to some employment consistency. As in maintaining. If I can maintain, I will be content.

Because I am really not allowed to have aspirations for more than that. It would be complicated. It would require further study. It would mean more stress. Stress means strain on the body. Strain on the body and stress means more pain. Lack of balance could mean a lot more pain. And a lot of time to get any sense of stability back... if ever. The last thing I want to do is rock the boat at all. But of course I have ideas of where I want to be in five years. Of course I would normally want to make progress. But, not in this body. In this body, I want to maintain.

Part of me loathes this. I had such dreams for myself that I could never attain due to chronic pain causing more and more of a complication in my life. I will always wonder what that life would have been like. This alternate reality of mine where I could have attained those goals and a career that I wanted. Or in the general area even. The road not traveled.

Part of me though is really practical. I realize I will have these chronic conditions Forever. Managing stress, understanding limits and moderating my activities is part of the game plan. Therefore choosing a job that fits in with that... as best as that is even possible is what is necessary. At a certain point, like now, I have to be satisfied with my progress because the stresses of advancement simply do not make any logical sense. Income is satisfactory...ish. Not great, but not horrible. It is in fact hard enough to work At All with chronic pain conditions. It is very easy to make it harder than it needs to be. I would like to make it as easy as possible.

I like the benefits of working. The fact it gets me out of the house and socializing. The income stability. Helping customers. The stimulation every day.

However, there is a point in your life with chronic illness when you just know that working is not all there is to life. Not all there is to your wellbeing and health. There are important considerations you need to think of to keep balance in your life. I want to sustain some sort of balance and maintain the work I have. And that is a goal worthy of having. Nothing more, nothing less.

We will always think about what could have been. Mourn who we were. What we could have been. But we are Not that person. We are an entirely different person. With different strengths. And we need different goals.

I would love to just redirect you to the new site...

But sadly the redirect function doesn't function. I will continue to persist hitting it and see if it will eventually do something. Or s...