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Showing posts from February, 2015

Will be working soon...

It looks like I have a return date of April 1st from my employer. They have been contacted by my insurance company with my status. However, finding a place for me will be tricky given the economy as it is. Not many positions open. Not many people even moving around. So they will keep me updated on where I will end up.

Nevertheless, it was good new to hear from them. I realize with a chronic illness there is only so much improvement I can actually expect. But I have gone in the right direction. The rest is sort of those coping skills I have learned along the way of dealing with the pain that is inevitable from there. That is not to say that I will not continue my progress with the pain clinic however, as that is vital. I am thinking of asking them to go through another round of BOTOX as my first trial of it was not the recommended shots and was a long time ago. Worth giving another go, while I am doing my exercise regiment.

The point is there is a lot of value to working that I miss in…

Thinking about my thinking

One thing about chronic pain and chronic illness is that you have to keep on top of the thinking about it. Because it is an emotional experience. It is something we react to. It is not just a physical experience. This can be in the form of comorbid mental illness like depression and anxiety, but it can also just be in the form of beliefs and thinking that do not help us at all.

Here is an article I wrote on chronic pain and cognitive therapy to give you a general idea of some of the things that we do.

Here is one I do often: "Overgeneralizing: Just because a situation went down badly once, does not mean it will always go down the same way. While this seems self-explanatory think of all the times you say 'this is always the case'. Sometimes we believe after trying many treatments that we never will find a treatment. Or if we are in a bad work situation we feel it must always be this way that we must suffer this way forever."

The fact is I am guilty of a lot o…


I want.

How do you ever stop yourself from wanting, I wonder? Wanting more than you can have due to the limitations and restrictions of your health?

I believe that the guilt we can have over our lack of productivity stems from the idea we should be more productive and Also the desire to be more so. Like everyone we thrive on being engaged in the world around us and involved in activities that consume us. That lack is felt.

This sense of dissatisfaction and discontent fails to leave me because I want more. I want the impossible.

The irony is when I get it I feel the pain of it all. I know what it is like to work full-time. It is an unpleasant experience I will not forget any time soon. One that saps the very desire to even survive from a person.

Yet I want.

I want what I want. Maybe because there is this glimmer of hope. This perfect ideal work from home job that exists for a few.

All I know is that the desire never leaves us. To be fully functional and engaged in the world to its ful…

Erratic #sleep and #Painsomnia

I have been interviewed for the May/June issue of Arthritis-Self Management magazine on an article they are doing about insomnia and pain. Ironically this is also the topic of an article I recently wrote for Fibromyalgia Aware magazine.

And a profound problem it is. I have to say when I was working insomnia and pain were my worst of enemies. You see my insomnia is profound. It simply is not suited to a 9 to 5 job. So you force it to fit and by doing so, get very little sleep. Getting very little sleep is a migraine trigger. So they became more frequent. Having an acute migraine before bed made it very difficult to fall sleep... and so the cycle goes on. There were days I did not sleep at all. Days I worked with only a couple of hours of sleep. And as a result a Lot of status migraines. That is, migraines that lasted more than three days... or days and days... weeks. The mental impact of status migraines should never be ignored. They are powerful indeed. To be in that sort of pain from…

#brain out of order

I have had a severe migraine for the last two days. My migraine triptan medication has failed to be effective. I am absolutely and profoundly fatigued. I have also been having some severe painsomnia as a result because the pain level is just too high to sleep. Then I can't get up in the morning and when I do I am utterly non-functional.

Brain has melted.

Words are not coming out as they should.

I forget what I am supposed to even be doing.

I do small actions wrong. For example my spouse brought me home a latte. It had a stopper in the top to prevent it from spilling in the car. I Meant to take that out. Instead I yanked off the top quickly and split coffee all over the place. Simple action, but the wrong one. This sort of thing happens a lot with migraines. You mean to do something and just do something else. You mean to say something and say something else. You mean to go into a room to get something and forget what you were doing.

Out of focus fuzzy brain pain sort of day.


#stigma and invisible #disability

There is something that is really beginning to frustrate me about the label of disabled when it comes to invisible disabilities. And that is there is no winning with other people. No matter what you do, or don't do, you will fit in some sort of stigma thinking that just makes no sense. There is a stigma out there for you, in other words. No matter what.

Let's say you cannot function at all. You cannot do modest housecleaning. You cannot do mild or moderate exercise. You cannot work. Well... then I am afraid you are doing nothing to help improve your condition and you are partly to blame for how you feel. In a way, you must be lazy. Maybe faking the intensity of it for attention. One of those three a) not doing anything to cure yourself b) faking it c) lazy. This comes up even if you are disabled but modestly functional and doing plenty of things to improve your quality of life... just not enough apparently.

Or you can do modest housekeeping some days. You can do mild to moder…

We are #stronger for this #battle

"Sometimes suffering is just suffering. It doesn't make you stronger. It doesn't build character. It only hurts."

We can talk a lot about the growth that comes from suffering. We can talk about how we choose to react to pain. We can talk about pain has changed us.

But I get a little tired of this idea that it makes us stronger. Sometimes is just doesn't. Sometimes I like to lie to myself and Believe that it makes me stronger because the lie is comforting. The real fact is that I don't feel strong at all. I feel broken. The only thing strong about this pain is continuing on with it when you don't feel like doing that at all. So there is strength in us. There is. But often I feel it is the lie of 'strength' that gets us through our suffering. And useful fictions like this are good things. I used to get up out of bed because of useful fictions. Sometimes that is all we have; the stories we tell ourselves to keep us going.

Perpetual #migraine attack

"This is a soul under perpetual migraine attack."

This soul right here.

I doubt very much people understand what that really means. I think they focus a lot on the pain. The pain is a tremendous factor in this equation, don't get me wrong, but it is one part of the massive puzzle that is a migraine.

To experience a migraine all the time means you experience all the other symptoms all the time as well. You get aura symptoms of visual effects or tingling skin and more. You might get constant tinnitus like me that gets worse with the migraine. You might even have persistent migraine auras, so that means the auras vary and are in play migraine or not and of long durations. You might get migraine associated vertigo and get vertigo to some degree all the time and bouts that last for various durations. You may get afflicted with aphasia as an aura symptom.

And during the prodrome and postrome you may have mood changes, fatigue and brain fog. In fact confusion can come at any p…

Gleams of sunshine

Chronic pain takes a lot out of... a life. But not everything.

I get the feeling that people expect us to suffer even when we do not suffer. That we should just Dwell in suffering. Wallow in in it. How dare you enjoy yourself... that is for happy, healthy people. How dare you go on vacation... what do you even Need one for?

What is worse... I think we do it to Ourselves after a while. Like we are not even worthy of leisure time. I get this, I do. My insurance company recently told me how I was significantly improved because I dare go out a socialize once every couple of weeks, or every three weeks. How dare I? And surely, indeed that must mean I am cured, right?



It does in fact not mean that at all.

It does mean that I wanted to improve my mood, as told by my psychologist and others, and was told to socialize as a component to this. Even in pain. As it makes you Feel better about life in general. And to also not do things based on how I Felt, or I would never do anything…

#VestibularMigraines and a severe bout of #Vertigo today

I have vestibular migraines (used to be called migraine associated vertigo). With me it presents as vertigo that occurs with the migraines and without the migraines. So between attacks. It is very sensitive to motion. So cars, planes, boats, elevators, escalators... those sorts of things will trigger some level of vertigo and sometimes a bout of it that endures for days or weeks.

Vertigo can present in different ways. You can have internal head spinning vertigo, where it feels like the inside of your head is whirling, you can have external vertigo, where it feels like the world is spinning, you can have swaying, where when you are sitting it feels like you are being drawn in to move in a direction causing a swaying motion, you can have mooshy floor and drop attacks, this is where when you are walking the ground itself feels unsteady, shifting and at times feels like it drops away and you stagger or lurch or fall as a result. I have experienced them all and am very prone to the ground…

I am 90% agony, 10% hope

I am half agony, half hope.

This seems to be the motto for chronic pain. The pain combined with the hope there will be less of it in the future.

It might have been when I was young, believed my doctors and specialists implicitly and thought medication would work exceptionally well that I was Half hope. There is a time when you believe medication will work really well. When a doctor states a preventative will prevent, you believe them. Why else would they say it? They don't break down the odds for success in the proper manner. You trust. Therefore, you have hope in your state of ignorance.

This lasts for a few medications but begins to wear thin. How many medications does it Take? Then you do a little research into these medications. Which are good, which are exception, which are poor. What sort of results you can expect Best Case Scenario. I must say, then, hope is a little hard to maintain at Half. So you say, I just want Less migraines. Just less.

Then you work your way through…

Looking for #Work and these are some sites that might help

In my efforts to job hunt I have been looking at some old job sites. It took me a while to sift though the crap and even longer to find anything useful to me as a Canadian. In case you are looking for something similar to work from home I am listing them here for you:

Rat Race Rebellion Is an excellent and broad list of of places to check out. Not so much for Canadian mind you but still, this would be the first place to Also a decent list of places to check out.Clickworker  a company that pays for quick easy jobs that you can do in your spare time. Basically in addition to other work.Pajama Daze always has some interesting ideas on there to look through. ProBlogger For blogging workAppen Butler Hill ,Leapforce andLionbridge - are web evaluator sites. Decent pay and interesting work. Long evaluation process for them though.Alpine Access - join a network of call work from home jobs. You set up a profile and they assign call work that is suitable for you. Could be cold calli…

Yes, I fear the #light

Photosensitivity occurs in about 80% if migraines statistically. I get an extra boost from fibromyalgia. Never the less it can be extremely painful. Just a thin little thread of light in a dark room is stabbing its way into your eyes. You dread leaving the house without sunglasses and even into lighted rooms to be honest. Leaving the darkened house of your existence is an ordeal.

The insomnia state of mind again

I wish I could fall a sleep like magic.

Nope. Didn't work.

You can't handle the truth. Or can you?

I love this image. Just makes me think about the reality of chronic pain and what we actually choose to express about chronic pain. Keep in mind I am a rather reserved, private introvert so what I choose to reveal about my existence, aside from this blog, may be different than what you choose to reveal.

I think there is a vast level of understanding with our loved ones gained through time, experience and visually seeing our condition that is not gained by others. Therefore for others to even have a tiny bit of understanding into what our existence entails means we actually have to tell them things.

I have talking about this before. There is a certain level of revealing and concealing with invisible disabilities. We can choose how to present information and when to do so. Or not to do so.

We might for example choose not to express a lot to a prospective employer for obvious reasons and maybe never give them much information. Or we might choose to carefully give them just enough inform…

I want #more. I do not want this to be all there Is. #AllThereIs

Today in my chronic pain class at the pain clinic we were talking about sleep which was extremely ironic since I had not slept at all the night before. However, I'll save that for another day because while it was interesting from a pain perspective it is old news for a chronic insomniac like me. What I would like to infinitely dwell on today is a little something we got side tracked on...

I cannot get used to, or truly accept, this is all I will be. That this is the end to all my ambitions. And it is. At best I will get a part time job that will not be in the least bit intellectually stimulating and have no prospects for career advancement simply to make money and nothing more.

I want more. I do not want this to be all there Is.

I feel like there could be More. But my body disagrees. And because I cannot accept this I am always... Always in a state of disillusionment with life. It feels stagnant to me, I told them. Like there is Nothing that is stimulating me.

They said since I l…

My chat with my insruance company... did not go well

I had a very frustrating conversation with my insurance company this morning. First, I should point out I had nill sleep the night before. Literally no sleep which enabled me to be awake early enough to get a hold of the chick with the time difference. Even so it took a bit. Nevertheless I was alert, if in pain. And angry and frustrated, rather than befuddled by the migraine and saddened by the situation. So that did help get my thoughts out. My very annoyed thoughts.

Second, I should also point out I really have a low opinion of her intelligence at this point in the game. I said how do you expect me to get a job with my previous employer when I Have Not Improved At All? Am I supposed to lie? She said no, that would not be good. But she thought I was doing 'better' and if by 'significantly better' she means going from Daily Migraines to Daily Migraines then I totally see her point. And thus, why I think she lacks intelligence at this point. As she seems to fail to gra…

#ChronicIllness and #Anxiety

Chronic illness creates fears that you never had before. Never had to worry about before. The future becomes this thing that Looms ahead of you with uncertainties you don't even want to think about but one thing that you know is that the chronic illness will be there.

It creates problems you never had before. Problems with no solutions. Which creates stress you can never be rid of.

We have more anxiety with chronic illness than we ever had without it. Anxiety becomes a force of its own. A force to be reckoned with.

In fact anxiety as a mental illness is often comorbid with chronic illness and chronic pain.

Just anxiety though is not at all a surprise. Yes, I am filled with anxiety created by the obstacles chronic illness has put in front of me, the problems it has created with no solutions and the stress it has created within me. And then... I have to deal with the anxiety, because I cannot deal with what is Causing it.

#migraine #duration

I made this image for the Migraineur Misfits Facebook page because there are a few things people do not get about migraines.

A) They are not headaches: In no way do they resemble tension headaches. They are a neurological disease. Migraine attacks have stages of which One is the headache phase. However, if you get silent migraines you do not get the headache phase at all. People with migraine with aura get the aura phase, but not all the time. And people with migraine without aura, do not get the aura phase. What is important to remember is that Pain is an Aspect of a migraine... a very brutal aspect indeed, but there is a lot going on with migraines like nausea, vertigo, sound sensitivity, light sensitivity and aura symptoms... and more.

B) By no means is this a short term event we are talking about here. When I say that I get a migraine a few hours after I get up in the morning what I Mean is that I have a migraine for the Rest of the Day. There it goes. Migraine. Because on averag…