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 my life. That void is hard to fill. In some ways I can, but in others I cannot. One thing I value is being engaged in the world. As a hermit I tend to be reclusive and this benefits me little. Working enables you to connect with people on a daily basis. This is a good thing. I enjoyed that. I missed it when it was gone. I did what my psychologist recommended by going out and socializing... a tad, but being engaged daily with people is really feeling that connection to the world. So there is that. Secondly, financial stability. That is something I find the lack of is very stressful to me. I am the sort that does not like debt and likes to save. But I cannot save if I must adhere to a very firm extremely tight budget. Third, is being intellectually engaged. This I can do to some extent on my own. But the more the better in this regard. Sometimes I feel like my brain is going to mush. And I feel like the lack of routine does not help with this. You just sort of stagnate.

I feel like it is a good thing that I am up for the challenge. I wonder if I should feel that way. I am a little more wary than I used to be. Several times burned by my brain in regards to work. Yet, I comprehend my options. I have a practical view of the situation and this seems to be the best scenario I can think of. To be honest I like the idea of it. There are so many aspects of working you miss when you are not. I understand the aspect I do not miss is the pain, but then the pain, that, is there anyway. 


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 of these and it is because chronic illness and chronic pain run us down and they are emotional experiences. The thing we have to remember is that we Have to keep on top of this. Negative self-talk and minimizing the positive are not good things to be doing for your mental and emotional well-being.

I have to remind myself constantly of this fact. You see, when I was younger and going to university as a freshmen I had some problem dealing with pain and being on my own for the first time in my life. The pain and the lack of a support system was difficult and I got depressed. What helped me immensely was a chapter in a book on depression and that chapter was all about cognitive therapy. Because it helped so very well in helping me cope with my chronic pain and I thought that was it. Done. Good job. But no, this is something we have to attend to constantly.

You have to learn to pay attention to these thoughts. Then think about them. What is wrong with that though? Well it is negative. Or generalized. Or whatever. Then think of a more reasonable thought to replace it.

'I will never get treatment that works'     or  
'I have to try because there are many treatments to  try and one might be for me.'

'My pain will never end' or
'I will have pain but maybe I can reduce my suffering, cope better and have more quality of life.'


You can even practice this. You can have a journal where you write down the thoughts that occur to you and then write the more realistic version.

The point is we need to counter them in our minds. Actively say the other phrase to counter the other thought. The brain learns and is like a broken record it will keep playing the tune it was taught. To teach it a new tune you have to beat it into it.

I must say when I am stressed out in life these sorts of thoughts plague me more. It is hard enough to manage them just due to illness but stress and illness do not play well together. It is just an added element that makes everything that much harder to deal with.

#Want



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 fullest extent in every way we want. Have all our wants. The desire is there, but the functionality is simply... not.

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 the moment you get up to the moment you fall asleep, assuming you can, for weeks.


All of that because of Insomnia. That is how powerful insomnia is. For a brief window I am still not working and for that I am thankful, but when I return to work I know this cycle will continue because this factor has not changed. You see not working helps in the sense that if I go to bed and I cannot sleep due to pain or due to profound insomnia, well, I do not have to get up at a set time in the morning so I can get some sleep. So it does not become that horrible migraine trigger. As a result, while I have daily migraines, I do not get status migraines. That makes a profound difference. Yet clearly my sleep is still as bad as it was. Days when I get very little. Days when I get none at all. It is very erratic.

Painsomnia is a massive problem all on its own. If you are in severe pain at night it is impossible to sleep. For me it certainly goes far beyond my sleeping such that it simply becomes ineffective. I have painkillers but they are not very strong, therefore I do not sleep. And that there is the problem. If you cannot manage the pain when it is severe, then you cannot manage your sleep.

Insomnia itself is its own very special problem. FM comes with its own unrefreshed sleep issues. You can sleep four hours or ten and you will still feel like you got nothing. You will wake up numerous times at night. Sometimes you will sort of just hover in stage one sleep like you just cannot actually sink into a deep sleep. It is infuriating. I also have delayed onset sleep... so it takes hours just to get to sleep. For insomnia I take a sleeping pill. Because it is pretty profound insomnia the sleeping pill is not that strong for me. I have taken other sleeping pills for short durations and they also were not that strong. I used to think it was the pills and it has become clear to me it is just me and my insomnia that is the problem. I think they are designed for a different sort of insomnia. So they just do not quite cut it. I get a better sleep on them. Some better quality. I wake up less I think. And fall asleep a little faster I believe. And I get to sleep faster, on nights when the pain does not interfere with that. So I sleep roughly five hours with them. It might just be that I have had this insomnia since I was a child and that is a long time to have ingrained this into my brain.

#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.

Frankly the longer the migraine the worse it gets because you get so very tired. The pain really wears a person down. I am in need of a break already and trust me, I have had migraines last longer than two days. Status migraines last three and I have had one last three weeks. Now That is a hellish experience not worth repeating. Surprised you know your name after that.

#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 moderate exercise some days. You can't work but you are doing as much as you can to improve your quality of life. And because of That... you are seen as too functional to be disabled. Therefore, you must be lazy because you should be working. Clearly you have the capacity since you can do a mild amount of other things on good days, right? By the very fact you are trying you are seen as completely functional. As if they cannot tell all the effort that a person goes though to do all those things. All the effort to be mildly functional on Some days. You just don't Look disabled enough. Because you were just doing all the right things you should have been doing, instead of.... apparently not.

Apparently there is this 'image' of disabled being completely and utterly non-functional and as soon as you 'do' anything... you are seen as functional. But when you 'fit' the image you are not 'trying hard enough'. When you 'try hard enough' you are then poof too 'functional to be disabled'. Like they have this imaginary line you cross from one to the other because of their conception of what disabled means. And it Does Not Mean that. Someone who is disabled can do a great deal to improve their quality of life, not like anyone else helps with that, and Still be disabled.

So what does disabled Look like? How does disabled Act?

It frustrates me to no end that a person on disability from work or disability with the government cannot improve their quality of life; socialize more, exercise a bit, see a psychologist, do meditation... whatever it takes and have that seen as making them 'too functional to be disabled'. It is like they want you crippled by your disability. Maybe it is just Insurance companies that do this sort of thing. But I suspect government disability people can be just as devious if they want to cut someone off. I would warn you if you are on disability to be very careful on what you say to those people. Very careful indeed. They will choose very silly reasons, don't give them any. Tell them only what you cannot do and why you cannot do it. Because this stigma is pervasive.

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 point in the game. Thinking through pain and the confusion is a difficult task.

Every migraine is different and comes with its own symptoms. You may have a burning skin pain in your scalp, tingling in your face, nausea and vertigo one day and the next have a visual aura, burning down your face, aphasia and severe fatigue.

Every day the same thing. Every day you try to think through this. Do things through this. To whatever degree is humanly possible. Sometimes it isn't. No break in there. No clarity to thinking. No clarity to memory or perception of reality or to your life. It is a constant haze of pain.

I wonder at times how I remember anything. And to tell you the truth I remember facts decently but not events very well or faces. Nothing that was going On while I was in pain. Too much focus was on the pain for the memory to be encoded properly.

Yes, this is a souls under perpetual migraine attack and it is a soul that is living a reality that is different indeed. Chronic pain just one factor that makes this reality different. Difficult.

I write this because I have had an acute migraine since I have woken up and have not been able to function at all. Have taken a number of pain killers to just be typing this. I have had vertigo that is messing with my balance. Phantom smells that are horrible and I keep trying to find where they are, but I know they don't exist... nothing could smell like that. I took a triptan but it did not work and so there is little more to do but suffer with it. The side of my face burns; an aura I get sometimes instead of tingles and I hate it. My neck hurts like a bitch and there is nothing to do about that either, except the exercises I have.

And I know... it will be this tomorrow as well. Just a new migraine. With different symptoms.

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?

Nope.

Sorry.

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, but rather to plan to do things and plan accordingly. That seems counter-productive but it does seem when you are in constant pain you simply never would feel like socializing or for that matter much else to be honest. Which is why you plan and ensure you take into account your limitations and pacing. Or so the pain clinic explained to me. Obviously with an acute migraine plans change, but sometimes I can take a triptan and lower the intensity. Sometimes I can go for a short time and when the migraine hits go home early, nothing wrong with that.

And get my gleams of sunshine. Which in fact, I think I deserve. In all this pain, don't we? Deserve just a little joy when we can get it? Why do we insist we cannot rest. We must productive at all times, because we are less productive so every moment must Mean something. When I was told to meditate I had a real hard time with it... because I felt like I was doing Nothing and Nothing is Wrong, right? Even if it helps me help myself, it is still wrong in my mind because it was not productive enough.

This concept we should be wallowing in our poor health and never doing anything that pleases us is really a form of stigma. When we do it to ourselves, a form of internal stigma. We are saying we must behave in a certain way because we don't deserve to be happy.

Have your gleams of sunshine. Take them. Enjoy them. Damn what others think about that because it is for you and your quality of life... not theirs. And really their opinions are useless. They have no concept of chronic illness and its treatment. So you should do what is good for you. Not them.

#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 feeling unstable and drop attacks.

I was put on a medication called Sibelium that brought my vertigo down from moderate and severe, to mild to moderate which was a pretty damn good success. It also brought me out of a month long attack. I also have not been getting really extended bouts.

But today I had a set back. My mom gave me a lift into the city to see my doctor and it caused some moderate vertigo. The ground felt unstable and mild drops kept happening. It was like that until this evening when suddenly it became severe and I had abrupt severe drop attacks. Each one caused me to yell out in surprise, and curse, and lurch to catch myself. Your heart just hammers like nuts because it is so sudden a falling sensation.

It worries me to be honest because it suggests the medication might not be working as well anymore. I am not driving as it is but I cannot even risk short distances if it is severe. I could at least potentially drive in town, but severe attacks are nuts and dangerously disorientating.

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 the list. Botox. Neuros tell you there is nothing more they can do for you. You get put on long waiting lists for headache clinics and pain clinics that Might help. Hope diminishes. So 90% agony and 10% hope that I might see some reduction in intensity or frequency.

You get to the point where your hope is so low you just accept this is the way it is going to be. That you must find ways to deal with this level of pain. That would be where pain management techniques come into play. So you hope that they work and you can just find a way to deal with it well, because it doesn't appear to be going anywhere.

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:


  1. 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 go.
  2. Indeed.com Also a decent list of places to check out.
  3. Clickworker  a company that pays for quick easy jobs that you can do in your spare time. Basically in addition to other work.
  4. Pajama Daze always has some interesting ideas on there to look through. 
  5. ProBlogger For blogging work
  6. Appen Butler Hill , Leapforce and Lionbridge - are web evaluator sites. Decent pay and interesting work. Long evaluation process for them though.
  7. 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 calling, telemarketing or taking orders or customer service by the sounds of it. But they pay salary with benefits. 

So that is what I have found so far with all my digging around. There are smaller gigs. Where you get emails when they come up, but obviously not much income from them. Or others like crowd-sourcing, which have potential for side income.


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.

take of my sunglasses? I think not

Research done in 2010 Nature Neuroscience where they thought they had discovered where this was coming from. They identified neural pathways in the brain that may be involved in worsening migraines with exposure to light. Some visually impaired people, lacking image-forming sight, are also affected suggested to researchers that non-image forming pathways were responsible
Researchers had 20 blind patients involved in the study with different forms of blindness. 14 of which could detect light while the other 6 could not. Those who could detect light had migraines worsened by light exposure and those who could not detect light were unaffected.
There are two separate visual pathways involved with the projection of retinal images to the brain. One is related to 'image formation' and the other related to 'non-image-forming' functions. The 14 who could detect light were capable of the 'non-image-forming' function. NHS

There is also research now about in-between migraine events of which they have found a 

few. One of which is photophobia. Some people have a lesser amount of photophobia 

between their migraine attacks.

"The American Headache Society is reporting new research showing that migraineurs have abnormal neural activity all the time, not just when we’re having a migraine attack.   In particular, this research reports abnormally excited activity in the parts of the brain responsible for sight and vision. Some have speculated that this may be why bright lights and loud noises are the most common migraine triggers — the idea, I suppose, is that if those parts of the brain are overexcited already, then it is more likely that stimulating them even more will cause an attack." The Daily Migraine

Treatment itself would be treating the migraine but for cases of chronic photosensitivity,

 such as myself it is problematic. One thing said to help is color tinted glasses. Regular

 glasses can increase our light sensitivity, but tinted glasses of certain colors have been

 suggested to help with photosensitivity. Blue blocking light seems to be the best option. 

One tint, a rose tint, called FL-41 has been studied to reduce headaches and migraines in 

children. Yellow tints are also said to be helpful. I personally use a rose tint I got put on 

my regular glasses, not the sort you order from the sites that offer them. I do rather like 

that tint for sure.







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 information. With my last job I expressed that I had chronic migraines, because I knew that it would affect my work life. I did not express that I had fibromyalgia right away because there is stigma related to it directly and it would not affect my work life. I did some time later when it was established it didn't, but by then it was firmly established the Migraines Did. Unfortunately, they had gotten worse rather quickly so that did not help at all.

Friends are another example. We might want to be completely clear that we cannot go out all the time, may cancel quite often and have difficultly with 'spontaneous' outings. But we really have choices in regards to how much of our reality we want to reveal, because these are people we enjoy the company of and actually relieve our stress. To me, I don't like to bring the facts of my existence into that. It comes out from time to time but I don't like it being an issue. Unless those friends also are dealing with chronic illness and then I am fine with talking about our mutual realities.

But that does not change the fact that the chronic pain reality I experience is different than what I Tell people. Before I tried to commit suicide I did not go around telling people I was desperate with pain, that I could not cope and I had no hope at all that it would change in the future. Because that is depressing and I am fully aware people do not want to hear these hard depressing truths. And so it came to a rather large surprise to everyone that I tried to kill myself to escape the pain. Not a surprise to me. I had suicidal thoughts for quite some time. In the different ways they occur... like wouldn't it be nice if I just died of natural causes right now. To more extreme.

So when I think 'You can't handle the truth' I am talking about the deepest darkest experiences of living with chronic pain constantly that takes its toll on us. I have only ever expressed those to people I love, usually when intoxicated, which is a very rare occurrence. People cannot handle the truth because they have no idea what to Do with it when you tell them how extremely difficult it actually is to live in such pain and how they affects your thinking and mood. And you don't want them to Do anything. You simply want to share this reality. I share it here. And I am fine with that. I share it in chronic pain groups because they have felt the exact same things. But you tell someone else any of these feelings that come with this existence and you just get this perplexed look because they can't understand why you would feel that way. Why do you feel worthless? You are not worthless. Well, I feel that way sometimes when I think of all the things I could be and will never achieve. Sorry. Just the way it is.

And there are a vast number of people out there that I will never, ever come close to revealing one bit of this reality. I will just tell them facts. Chronic migraines are more than 15 times a month. I will spit out facts so they understand I am not an anomaly in this. That it is difficult to treat. That I am doing as much as I can to manage my pain. And thank you I have tried that thing you mentioned and, no, it did not work. Facts though are not my existence or experience. They do not help people grasp what I am going through, they simply help confront the obvious preconceptions and stigma they have associated with chronic pain or specific conditions of which there is many. Knowledge is power. It is useful. But it is not feeling. It is not what I go through.

We have that power to reveal aspects of our story and conceal them. And we have the option of choosing where to do so. How to do so. I choose this blog and support groups. And I also reveal in different ways to different people. I think sometimes when we say 'You do not understand my pain' we have to remember we never reveal it in its entirely. Just fragments. Maybe no one can truly grasp this story without having experienced it because it is a deep, deep story that can never be completely expressed. Or at least that is what this rather introverted, private recluse thinks.

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 like to read I should join a book club in order to socialize. But I said this is not about socializing. I read. I read massive amounts of books. And I socialize a tiny little bit in small doses when I can handle it. What I mean is that I need more than that. I need my brain to feel like it is energized. It is engaged. It is interested.

It is why I blog. It is why I write articles. It is why I made my Facebook Page to track down research and share. Researching is always fun to me. And it is why I do the same with the Migraineur Misfits Page I admin on. And doing content creation for both. I am just trying to find thing I can Get Into. To absorb me. Unfortunately none of them make money. Sadly. But they do engage me.

It is also why i write fantasy fiction. Because other than finding things to intellectually engage me I need to be creatively expressing myself.

I do all of this because of this feeling that I cannot have more. That I will never have more and I have to fill the void.

Until I accept this... I will never be happy. I know that. However, I think part of accepting that is finding the things we Love and doing them. If we love them, do them. If they don't make you money, who cares. This is about what makes you feel fulfilled.

Maybe this is it for me. But I will continue writing... keep my brain active, researching as well. And I will continue writing books keeping my creativity going. And these will be the things that fulfill me.

My jobs will be my jobs. Things that are easier on me because they have to be. Because it is all I can handle it part time and easy.

one of my classmates even suggested free online classes. Which I might check out. To keep learning and growing is important to me.

That feeling I am stagnant. My brain is just melting and has nothing to engage it has to go. I have filled the void with many things. And they mean a lot to me.

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 grasp the definition of 'improvement'. She also said it was not their problem I had vertigo and could not drive any real distance. So I guess it is society's problem when I crash on the highway killing a few dozen people.... but no her problem. Unfortunately I don't want to risk my life, or other peoples, so commuting any real distance is out of the question.

I called, out of curiosity, to see how they were going to 'help' me gain gainful employment given the lack of actual improvement, the vertigo and the fact that I am not exactly employable. Turns out they have a lame plan to do very little. I think I have established That is something they do well. First, they will not get me a job back with my previous employer, except part time since that is all I can work now... because they have closed the file (apparently not for a few months, but apparently closed enough) such that it is no longer in their hands. So much for that lie they told me that I could get my job back with my employer. Thanks for that. So I would have to go to my previous employer and Apply for a job Knowing they would ask if I had Improved and I have Not. Assuming they had an opening, which they do not. I asked if this made any logical sense, unless of course I lied. In what world would those people give me a job when they were trying to get rid of me in the first place? I would have to be one hell of a liar. Almost as good as the insurance company. Hell, maybe I could give them the letter showing that I have 'significantly improved' and not say anything. If they believe that bullshit I'd be set, but I image that have more intelligence than that.

Then I said, well, then, what are you willing to do to help me with my other non-existent job prospects since I am non-competative in the workforce? Well, she says, we can help you with a resume. Really? I have been writing resumes since I was 12. I think I have it down. Well, we can help you with a job search. Well, I replied, I cannot drive and live in a small city... even I can look in the tiny local paper for jobs. Think I can handle the page of jobs I am no longer fit to do or have no skill for and am also not fit to do. But thanks. I appreciate that vast amount of assistance. I think I can handle looking at job boards online as well. What are they going to do? Give me a list of links to job boards and Viola? Utterly and profoundly useless. I had to phone though because I wanted to see what this offer entailed, but if it really isn't an offer but just a brush off there is no point.

So I was angry but that is better than depressed. I have a right to be angry. These insurance companies can apparently just make up reasons to get you off their books. But us? We have to scramble to do a complex appeal that might be denied for any little reason.

Nevertheless, I am considering my options. Because I must to survive. And survival is what it is all about despite the morons that make our lives more of an obstacle to our treatment than they already were in so many ways, gotta just want to bitch slap those sorts whenever you encounter them... we are the ones that have to find a way around these obstacles. Our illness itself is a constant obstacle that we deal with on a constant basis and we get pretty damn good at that.

Sorry to have a rant session on you guys but I was pretty livid. I mean if I had improved and had progress and was making my way to that point it wouldn't be any issue. Like everyone I have goals to achieve. But for these ludicrous made up reasons it is frankly just damn insulting to every person I can think of that is disabled and fighting to manage their condition. That they can do that and think they can get away with it makes me furious. However, I suspect they really, really do or why would they pull it?

#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 average a migraine is a 24 event from the start of the attack to the end of the attack. If you are Lucky it can be 4 hours and if you are Not it can be 3 Days. And if you are very unlucky indeed you can have a migraine that goes well beyond three days. For example menstrual migraines start for me three days before my period and last three to four days after... One migraine. Just constant. And if I get 'stuck' in it due to stress and lack of sleep I have had them last for three weeks.

It can be brutal to have a migraine last three days and just intensely severe to have them last longer. You have no idea how that can affect a person. How it affects sleep. How it affects mood. It is not the sort of experience you ever want to endure.

It seems to be this idea that migraines are 4 to 8 hour experiences. When that is not the case at all. Duration is a variable that changes and in general without treatment of any kind, which can be the case with chronic migraines, you are down for the count all day.

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...