Victory is mine! Or not.

I think the one thing that holds me back with coping with chronic pain over all is that I can't win. If I lose a limb, that would suck, but then I would be challenged to learn how to cope and then in the end I would, I would get my victory and be damn proud of my accomplishment. With chronic pain there is no end and so there is no victory. There are the things like being proud that we are able to work, but then there is also the whack load of guilt when you are not able to.

If I follow the path and do all the techniques that might help me survive chronic pain better then all I am doing is learning how to lie better. Fooling others into believing I am not suffering as much as I am, and that is no real victory to me, since silience takes a huge toll on us as well. So I am resistent to these suggestions that I need to change my lifestyle in order to cope better. First of all it is like blaming the patient... if they are not doing all the work that they should be doing, having no vices and living well, exercising and taking their vitamins like good little citizens... then they are to blame for not being better. That makes me reistent to playing nice. Now I understand it is all to make me feel better about not feeling better. Which is so much better? Er. Not sure, but I am towing the party line. Nontheless I fear masking pain does me no good. My shrink says laughing off pain makes people believe you are not suffering as much... and that is true, but so does being just functional enough to do all those things she wants... if I can exercise and such, then obviously I am not suffering right?
And in the end lets say all that makes me more engaged with the world and find my bliss and hold my power and yada fricken yada... is that a victory? Not really. It is just saying that I am willing to live with pain rather than simply survive it. A slim difference. Because apparently what I crave is that victory. That I conquered the pain, even though it is there, it does not stop me from doing whatever I please, making it so I do have passions and goals and such fanciful things. And so I am in a constant state of disillusionment, because I will never 'win' enough to make the life I want and having less is a loss to me. And my name (Nikki) does mean Victory, so it is all in the name. If enduring pain in the long term enabled me to achieve what I desire then it would be worth it, as some things are work the extra suffering, but when all my experience has taught me is that I must compramise, I must accept that I will never have what I desire and learn to let go.... and to mean that is giving in, so it really should not be suprising that after years of giving in and 'coping' I am depressed at what is left to me.

That is not to say I am not all for betterment, of trying new things and trying to live well. I just think it is follish to believe that if I change my lifestyle I will feel so much better, when really it will mean I appear to feel better, certainly to hide how I feel better. That worries me a great deal. That I will see some minor improvement that will enable me to join the workfoce full power ahead, just better enough to be able to struggle through it with a smile on my face, but not better enough that that 'sucess' will simply bring me more suffering.


William Ernest Henley. 1849–1903


Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Nightmares are really starting to irk me

I get the sort of nightmares brought on by sleep paralysis, mostly because sleep paralysis freaks me out. So sometime during the night, I feel awake, but then realize I can't move and then I freak out and wake myself up. Sometimes more than once a night. Thing is now when I fall asleep I dream I am awake, but that something feels wrong, everything is off, which freaks me out and I try to get up, realize I can't move, or move sluggishly, and then freak out and litterally yank myself awake. Honestly this is becoming so frequent my nightmare of waking up, but being lucid dreaming and aware of my inability to move, is rather causing worse sleep problems than my insomnia. Because once I wrench myself awake, it is hard to fall back to sleep. Also since if I do fall back to sleep right away, the same thing tends to happen. Today I wrenched myself awake and swear I saw this shadowy figure standing by the bed, leaning inward... which seriously freaked me out, such that I had to get up a bit before I tried again. Fact is, I have never gotten why people like lucid dreaming as it feels wierd to me. Sure when in a dream, realizing you are dreaming can be fun. But when you have sleep parlysis, you are more aware than you should be, certainly aware enough to know you are in that natural state of sleep paralysis... so it gives you a feeling you are awake, but not quite and to me that just feels wrong. That sense of wrongness freaks me out even before I realize I have mobility issues.

How to be a Hermit

1) Avoid sunlight: Sunlight is evil, but besides that fact, if you avoid sunlight you will avoid 90% of people. In fact, if in contact with sunlight, squint, look confused and possibly scream.

2) Do not leave the house: Your house is your cave. You can randomly heckle or rant at people that come to the door, in fact it is recommended, but do not leave unless in dire need.

3) Do not answer the phone: Lets face it, if you are a good hermit, the only person calling are telemarketers anyway. If you do feel impelled to answer the phone, then feel free to engage the telemarketer in a random conversation about religion, politics and anything that is highly opinionated.

4) Develop good ranting skills: This is a necessary asset to any hermit. Get your rant on about anything, but mostly about 'Those People' and 'The Man' and 'Others'.

5) Act crazy or confused when in contact with 'them' or the 'others': This means basically anyone that is not like you. They don't 'get' you and are possibly 'against' you.

A little cognitive therapy to get your happiness on

Here is the thing about cognitive therapy, we create our own reality and how we react to situations and stress. Unfortunately, we do most of this on automatic pilot. It is all habitual responses we have taught ourselves over time that we just spew out without thinking about it. In order to treat depression we have to be mindful of the thought patterns we already have and eventually override them.

'The flowers are bright, but the person's mind is dark'. Reality is purely subjective. One can choose a pessimistic viewpoint on an absolutely bright and sunny day, while another person can see beauty in spite of the darkest clouds. This applies in every aspect. The first thing the person must do is embrace the experience of depression. Depression does not occur because of some outside circumstance. It occurs internally, when the body and mind have developed a negative disposition.

Depression is closely linked to the conditions of anguish and anxiety. The person is not consciously aware of anguish. Often times, the condition of anguish was caused by the repression of a past event - perhaps a lost loved one, an emotional breakdown, etc. In regard to anxiety, the cause is usually discovered within conscious levels of thought. It takes a little self-questioning on the person's part in order to locate anxiety's root cause.

What lifts depression is the capability to understand it. By understanding the nature of it, the person will be able to identify what it is that's hiding beneath. Like happiness, depression is influenced by the person's habits and activities. The things that surround the person strongly influence that person. If the person is surrounded by negativity and fear, then it is likely that they will experience the same. On the opposite end, if the person essentially chooses to be around positive events, then depression would be less of a problem or no problem at all.

Some of the habitual thoughts are in areas of:

Self evaluation: The depressed mind it an overly crital one. We don't give ourselves any slack. We make any sort of error and automatically we think 'I suck', 'I shouldn't have tried', 'I'm stupid', 'It's hopeless'. As such we blame ourselves for everything wrong and credit others when things go well. We have to avoid black and white thinking, it is not either I am a complete loser or I rock, but endless shades of sucking and or rocking.

Skills: We can make a long list of things we are not good at, or character flaws without acklowedging the fundamental power we have to alter them, and therefore we acknowledge out failures as par the course.

Experiences: We tend to notice the negatives, and remember them, but fail to notice the overall positves to an experience, even if it outnumbers the negatives by far. This leads to such things as assuming the worst is bound to happen, since your negative history suggests that.

Self talk: This is crippling to a depressed person because negative self talk sets you up for failure, so that when said failure occurs, you expect it... I guess in an attempt to save ourselves from disapointment. When confronted with a problem instead of saying 'this will be tricky, but I can do it' we might say 'There is no way I can do this.'

Automatic thoughts: We have more than enough time to have programed ourselves to think and react a certain way. So when something happens in a situation we have a knee jerk response that is often negative. Anything that involves statements with should, must, always, never. Often we have rigid standards we hold ourselves to, impossible to hold to... like: 'I have to suceed or I am worthless'.

Overgeneralizing: Just because I situation went down badly once, does not mean it will always go down the same way. While this seems self explanitory think of all the times you say 'this is always the case'.

All this negative background noise really hits us hard. So the idea is to figure out the irrational underlying assumptions we make, then when these occur to us throughout the day replace them with rational responses. Some people would say it is mindful inrospection, or even postive thinking. Fact is the brain is a broken record that sings the same tune until you override it with something more realistic and functional.

Now at first you may not catch how many times these negative thought patterns rear their ugly heads, but trust me when you are mindful of your own thinking you will realize it is quite often. The first step is to merely record what negative thoughts are occuring to you and what assumptions they are based on. For example one of mine is 'If I am not a functional member of society then I am worthless. I am a liability not an asset'. What assumption makes this true? That my self worth is dependant on what I can do while suffering from pain and when I can not do what I feel is necessary then I have no worth at all. Now this is an irrational belief because our self worth, or our worth over all, is not merely dependant on what we can do (ie work) in addition to the fact that I am setting myself a standard that is damn high.

Once you find out what thoughts are occuring to you and the underlying irrational beliefs and assumptions you are making you are half way there. Then it is simply deconstructing what and why you have that belief. Record your understanding of why you have that belief as well as why it is irrational.

Now here is where the positive thinking comes in. Once you have picked out a list of your assumpions and negative talk, have analysed them as to why they are irrational, then every time during the day one of those knee jerk thoughts hits you, you simply pause, and activily stop yourself, think the opposite. Every time you actively counter these automatic thoughts the more your brain absorbs the new pattern, until your habitual thought pattern is more realistic. So if I think, 'If I can't work then I am worthless' I could think to myself 'No, my self worth is not dependant on work alone and my worth to others has little to do with it.' And finish off with a reinforced positve thought... 'I am worthy.'

This method worked awesome for me back in the day. I am mindful of the negative thoughts that occur to me now, problem is they revolve around my inability to escape pain, so it can be said the mindset I have now is a pit tricky because pain will not go away, it will affect my life and it is not a state of mind... however, the assumptions I make about my life, my worth and many other things, that come from being chronically ill are open to interpretation and those are the things we can alter, thereby helping us to cope, or react, to pain.

Label me not

Alright, I admit I do engage in a little sucidal ideation and, yeah, I did actual try to commit suicide but despite those rather obvious points I refuse to be labeled 'Depressed'. Naturally I can spit out some impressive rationlizations...

1) Coping is not a linear process with a beginning and an end, an end that sits us in 'acceptance' for the remainder of our chronic pain existence. It is a process which fluctuates, sometimes we stick in one stage longer than another, but we will never reach a perfect state of acceptance. Thusly, while I admit to being depressed sometimes, I would hardly say all the time.

2) Migraines affect mood. So while I may be melencholy prior to a migraine, or irrationally and extremely depressed while in a full blown acute migraine... when the migraine is gone the mood is gone. I also get hypomanic before a migraine, but no one would label me manic.

So nice rationalizations. Sometimes I impress myself with my own self denial. But really and truly I deny the label for two very valid reasons. The core reasons.

1) When I was young and undiagnosed with FMS I went to a doctor and said this pain was getting to me, plus I had all these unexplained symptoms that seemed to be rather adding up to something. He took one look at me. Woman. Young. Ergo... depressed. He put me on an antidepressant and sent me off. Well that antidepressant made me an emotional zombie. I slept all the time and only ate when someone dragged me out of bed, and as such lost a lot of weight. I missed my classes, my exams, and really did not care, except I knew I should care. Now I will admit I was depressed. All that undiagnosed pain and stresses got to me. So I know what depression is. I stopped that med. Did some cognative therapy on myself and totally defeated that depression... and, image this, the pain was still there! Wow. So I do not like the assumptions doctors make when they shove that label on someone, because for some wierd reason they think the depression came first and that caused the rest, when it is the exact opposite. They do not seem to consider they ought to treat the underlying condition, rather than the depression. In my mind there are a thousand ways to deal with depression caused my a chronic illness that do not involve medication.

2) My father has FMS and he had a nervous breakdown (I can relate to that, since we had the same reasons... hostile work enviroment). Now I don't know much of what happened with him there so I expect he had more reasons than I know of. Natually in such cases he was forced to see a shrink (and totally relate to that). They got the entire family together for a group session which was brutal. They implied he was depressed in truth and did not have FMS at all (because a shrink would know?) and seemed to convinced him of the same. I was totally insulted and disgusted with the whole thing. Strangely enough my father tried to commit suicide a few times after his oh so not awesome shrikage treatments (um, apple did not fall far from the tree there, eh?) I can relate to his suffering and I know what we all go through, but sometimes I swear shrinks are just plain dumber than dirt.

Since my depression when I was younger (18-20) was profound and pretty easy to accept and understand. I certainly did not deny it then. I certainly did not get any help from doctors or shrinks. I remember that time vividly. And I do not feel like that now. So I still have trouble with that dang label... unless it was more 'episodic depression depending on pain levels'.

Nevertheless, I have to acknowledge the facts. Most people do not deeply desire to have a stroke when they get an acute migraine because a stroke would be a valid reason to miss work. I quite aware that it is not normal to feel that way. I can accept the facts, the habitual thought patterns and the negative behaviours and I can work to change those to tweek the old coping skills a wee bit. So I can deny the label and still modify my behaviours. But I swear, if people start to say if I were not depressed I would not be in so much pain I will throttle them. I get enough with the if you only changed your lifestyle completely you would feel better crap (which I also do not deny, but things are far more complex than Those People think).

Now that I got that out of my system I will follow this post later with a little cognative therapy bit that helps all of us that are depressed, indulge in some sucidial ideation, pray for a heart attack, but not really depressed depressed, or actually depressed depressed. :)

Hermit or Argophobic?

My shrink says I am literally on my way to becoming agoraphobic, rather than a hermit that prefers her own company.  Which is entirely true.  For two reasons really.  One being, I am a reserved and introspective person that really is quite fine by myself and enjoys a lot of hobbies that are solitary.  A social butterfly would have troubles becoming reclusive, whereas I find it all to easy.  Secondly, I have trained myself quite well to be this way as a naturally pain avoidance.  You trim the fat off your life, and maybe those elements of socialization and exercise are important, but not as important as surviving the work day.  So out of necessity you get rid of them without thinking about the positive effects they had on your life at the time.  Then there is the fact you can't do things like that on a routine basis because pain disrupts routines of any sort.  And you can't make plans do do things because pain gets in the way of that as well.  Then it sort of sneaks up on you that in the house you can control your environment, but Out There you cannot.  As soon as you step out into the light pain will come.  And that rather makes it easier to choose to stay inside.

So every time she mentions something to get me out of the house I am rather resistant to the idea.  Rather not get into it and fail at it, when I can simply not bother.  But in order to live rather than exist, we need to be engaged with the outside world in some fashion or another.  So my homework is to leave the house every day for any amount of time to do any thing I wish... even if that is simply going to the cafe and reading there.

FMS remission or cure?

My shrink made an off hand comment that I had never before heard, nor can I verify it via my googling abilities... she said Fibromyalgia disappears over time.  It floored me.  First of all, news to me.  Secondly, she had no verification and I don't think people, let alone shrinks, should be tossing statements like that around without solid referenced proof... it is called giving people false hope.  I said my FMS does not bother me much as long as I don't bother it, sure many of the symptoms flare up and cause a lot of trouble and sure I can't sleep normally if my life depended on it, but the pain is tolerable in comparison to the chronic migraines.  Pain is all relative after all.  That is not to say that the pain of FMS does not flare up like a sonofagun and can even make it difficult to walk or move my arms or wrists, but day to day, it is well within tolerable limits.

I cannot find any reference to FMS just going away.  I know there is no cure.  I know it can go into remission for years even, not that I have ever had that pleasure.  But just goes away as you get older?  How awesome would that be?  I guess one night I might just actually go to sleep, stay asleep, without twitching my muscles, wake up feeling awesome, not stiff or sore, suddenly have a normal digestive system, suddenly be able to exercise without instant muscle fatigue and pain, without the consequences of days of elevated pain... and if that happened, well, hell, I would be doing a happy dance all damn day.  Especially since my FMS triggers are migraine triggers, all that sensitivity to light, smell, touch, chemicals would just poof be gone and thus make the world way more migraine friendly.

So I wonder when this miracle day is supposed to come.  Unlike some people who develop FMS after an illness or accident (a jolt to the nervous system), I was symptomatic at 8 and by 18 had all the long list of symptoms and trigger points.  So well over two decades, might as well say my whole life really.  Maybe this will spontaneously hit when I am in my 70's, in which case I will likely not notice.

So on my next appointment I plan on flat out asking her for proof.  So that I might share this amazing study with others.  Since I have yet to meet anyone with FMS who has been in long, long term remission.

I am Humpty Dumpty

Like Humpty Dumpty, I have spent decades teetering on the edge of a wall.  Occasionally I would find balance but sometimes I felt like I was going to fall, sometimes I felt like I was falling, but then I would hit that delicate balance again.  Yet I felt confident I would stay on that wall, not thinking that one strong push by a wind and I would topple over.  Work was that wind.  Unanticipated stress from an employer that destroyed me ability to cope by taking away my self respect, my self confidence, my pride in my work, my self esteem.  Those upper people who did not know me and did not know how carefully I sat on that wall and how proud I was to be able to work wanted to push me to suddenly cure myself or leave.  Their threats succeeded because when I became diminished, afraid and ashamed to call in sick, when they took my choice to call in sick or push through the day, well, they obliterated my self worth and I knew I could not do it.  I could not be what they wanted.  I could not let them take away what I had achieved through my struggle.  All I could do was push through the pain until it broke me.  Until I felt myself fracture.  I knew it and I hoped to patch myself up with duct tape and push through till it got better.  But the pain won.  They won.  I fell off the wall and I shattered into a million pieces.

Now I wonder how to put myself back together.  I am forced to acknowledge that this is just one more thing I must give up and I must find a way to replace that whole in my life.  I remember sometimes laughing so hard I would cry and I would suddenly feel this horrible sorrow and want to keep on crying.  Laughter is the best medicine because it lies... it tricks people into believing you are well and it masks the pain so that you convince yourself you are well, but beneath writhes a twisted mass of emotions.  My shrink wonders why I do not want to open up, why I am 'resistent'... but she does not know that when you are open and honest about how much pain you are in, how much you suffer, it causes the dam to break and you can't control your emotional pain.  What she wants me to learn is how to cope with the pain better and I think why?  So that I can piece myself together and climb back on that wall and fool others into thinking I am fine while I tip back and forth waiting for that hit to smack me down?  So I can work again and go through all that torment with a smile on my face?  Why is it such a bad thing to say I am surviving, I am coping but the pain is just too much for me to function like other people.  Why do I have to follow their rules, as if I need to work for some reason they believe is healthy, when in fact some monkey job would make me feel worse, wasted, useless.  I know my capabilities, my reality not my potential.  I know the reasons I clung to working as long as I did and it was not the reasons they think.  It is so wierd that she thinks she can help me when she cannot even comprehend my reality.  I do not need a wall to bounce my feelings and thoughts off on, I get them out in other ways.  I do not need someone to give me their opinions on what will help me cope, like they are unique and I have no heard them a hundred times over and tried them.  Coping is unique to the person and it is a process.  I guess that makes me 'resistent'.  But maybe I would benifit better being in a support group of people that actually get it because I really hate it when shrinks put words in our mouths, like we meant something different than what we said.  Maybe it is just that when my father had a nervous breakdown at work (he was figro) and we did this group thing, they did feed him their opinions and told him what to believe about what happened to him, like the pain did not matter and I was both insulted by that (because I am the same as him in some ways) and disgusted by it.  Ah, well, either way I must tolerate the shrinkage because my family thinks I should, and that means more than my opinion.

We need distraction

The theme of the October 2010 Headache & Migraine Disease Blog Carnival carnival will be "How do your hobbies help you cope with your headache disorder?"

Most people go through their day and are free in moments of silence to contemplate, ponder, worry and regret without the risk of these causing depression or suicidal tendancies.  Those of us with chronic pain really should worry about any lingering moment of silence by ourselves because thinking about pain, our future in pain and our past while in pain is really a bad idea... because, rather depressing.  So how do we avoid reality?  Many things.  Work- if you can.  Socialize- if you can.  Exersize- if you can.  Anything to fill in any moment of the day really.  One of the best things because it is relaxing as well as distracting is finding a hobby to engross yourself in.  Something that will consume any portion of the day you have left to yourself. 

My favorite hobby is creative writing because it has that element of escapism added with its distracting me from reality element.  I can for a moment lock myself in a world of my own creation and torment my poor characters, who are in the end better for their trials.  This hobby requires a great deal of thought and there is that sense of satisfaction and self worth in completing a novel that reminds me I am still capable of some things.  So hobbies can help with that sense of self worth.

Some people consider reading a hobby and the amount of time I spend reading it might as well be.  The benifits to reading are both distraction and escapism.  You can escape into a different world and for a moment forget about this one.

Maybe even blogging is a hobby and if it can be said to be, then I recommend it as well.  In this case it is a distraction, but it is also a way to connect with others in areas that interest you.  So in that sense you are more engaged.  You can also blog about your health and this is both cathartic, since writing about your emotions and fustrations is one way to express yourself, get it out of your system and that is a great stress relief. 

Now most of my hobbies are at home and solitary but certainly there is a benifit to hobbies that connect you with the world.  Making youself stay connected with other people and engaged are vital to being human.  In that sense if you cannot work or are retired you need something to fill that void.

So to recap:

  • Distracting yourself is very important.  Avoid thinking at all costs.
  • A little escapism never hurt nobody.
  • Creativity in all forms helps you express yourself and relieve emotional tenstion.
  • Connecting with others with similar interests is a way to stay engaged with the outside world.

I have to say I am a little annoyed with my shrink...

So far all the methods she has suggested to help me cope with pain are not news to me and have been tried at one time or another.  They are in fact some of those annoying suggestions you get from random people that suggests if you just alter your lifestyle you will presumably feel a whole lot better... even those the suggestions are things that 90% of the population does not do.  I suppose I could go around telling obese people to exercise cause it will make them feel better, but that might be ignoring a lot of what is going on and possibly a lot of physical problems.

Despite the fact the woman is looking at the problem from the angle of what can I do to help me in a very simplistic way, that does not mean I am not going to do it.  Just means I am a little ticked thats what she came up with.  Like its original.  Like its a news to me.

First I am doing the regular sleep cyle thing with the early morning waking bit.  So far, lots of no sleeping and then last night a killer migraine that made me sleep in and ruined my whole day.  Awesome.  Still trying to keep to the plan.

Second is the eating small meals throughout the day.  I have forced myself to do so and even managed to keep it all in me, but it did require some anti-nausea meds today.

Third is the whole evil caffiene bit, which is not that hard.  I replaced my regular drink of choice with the caffiene free version, added some water and then some herbals teas.  Yay me.  Does it make a difference?  No.  Maybe it will in the long term?  Not likely, since it did not before.  But whatever.  Its done.

Next will be the quitting smoking and the start of some sort of exersize.  The exersize thing is bothersome, mostly because I get so many migraines when the hell do I set up a routine when I am not getting them.  I suppose she means me to exersize with them, hopefully without having a stroke.

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...