My shrink is a meaner

I went for my first shrink appointment and it was interesting and annoying.  She said I loved others more than myself, which is true, because my body is broken and annoys me.  We discussed how my reasoning is emotional, negative and irrational when I am in extreme pain... duh.

So these are the steps I need to take....

1) exercise- always a fav with the docs.  Not possible when I am working, but sure I will do it when I am not working.  Not sure how that will work when I return to work though.  I am going to start with walking and work up to yoga and water aerobics.

2) Quit smoking-  really?  That is bad for me?  Huh.  That's sure news to me.  Besides I am on top of that one, and not because of the migraines, since I know it makes no difference with those, but for the asthma, which obviously would be way better.

3) Quit the diet coke- and not for the aspartame which many people believe is evil, but for the caffeine, which can affect migraines, but the last time I did this experiment it made no difference.  This one will be damned hard since I am constantly thirsty and hate sugary drinks which limits me to water and herbal tea.

4) Eat regularly- I suck at this even tho I know I should.  I am just not hungry most of the time, and sometimes nauseous.  So I will work on it.

5) Go to sleep at 12 latest and get up a 9am- this will be loads of non sleeping fun.  Also no computer or TV or reading before bed.  So I will just sit there and twiddle my thumbs I guess.

Obviously not all at once, but certainly to establish a rigid routine.  I guess it is rather like my vitamins, get into the habit of doing it even though your not sure it is actually doing anything, but can't hurt.  And of course some of these things are impossible when i am working and not sure how they will translate to when I am back at work.  And why is it us unhealthy people always have to do all the healthy habits with none of the vices to sort of maybe feel better?

The visual Aura can be so trippy

I swear year by year my visual migraine aura gets worse and worse.  I hate light of all sorts and maybe that is because I get the light senetivity from FMS as well as migraines, either way light is painful and a migraine trigger.  The lighter it is the more intense my usual prolonged aura of visual snow is... all those billions of sparkles creating a wierd warping current in the air.  Then before a migraine the visual snow gets brighter and the specks larger, as well, I get a sort of murky ink that flows through my visual field.  Sometimes I also get the warping, flashing negative aura.  Recently I noticed in the morning when I first exit my completely dark bedroom and go into the hateful light that I suddenly get an intense flashing aura that completely obscures my vision for five to twenty minutes.  Very Intense.

Loving this new research

Migraine-gene-discovery-could-lead-to-new-pain-killers - looks like they may be able to potentially find medications to increase our pain threshold.  Gotta love that!

It is believed that it controls the sensitivity of pain nerves in the brain and if faulty can bring the threshold so low that just living is painful.

This is why migraine sufferers are so sensitive to light, sounds and even touch.

But the gene is also susceptible to being switched on and off with drugs which means that it could be altered to increase the threshold to such an extent it eliminates the feeling of pain altogether.

The potential loss

I think what bothers me the most about my disease is the loss of my potential. When I was younger I was all potential. Then I went to university to grow my potential. I did not have great ambitions, but I did have fine goals to realize my potential. My disease has literally taken away all my potential. There is no Becoming. There is simply Existing. I am useless. I serve no function. I will not become more than I am. It is stagnant.

That is an extremely difficult thing to accept. Right now, now that I have survived myself, I am struggling to find a place. Struggling to decide whether it is reasonable to contining working and what I will replace that lack with. This is a vital struggle to win because we all need to feel like we are accomplishing something by our existence.

Sometime you just have to get out of the house...

I took my man out for neon bowling. Neon bowling is in the dark, so I rather like that. And I like bowling. What I don't like is the whack load of pain I am in the next day. Crippling pain. Hard to walk pain. FMS pain. It will last a good week, that is what I know from previous experiences. It was worth it though. To get out and do something. To spend time with my man. Sometimes you should get out and do something fun even though you know the price you will pay for it.

When I woke up today, aside from the nasty muscle pain throughout my body I was also blinded by an overpowering migraine aura. It was black, swirling, flickering throughout my vision. I kept rubbing my face thinking something was there, because my forehead tingled. I could barely see at all, so I ended up trying to go back to sleep. Later when i got out of bed the aura was still very intense, making everything distorted. But the migraine itself was not that bad, maybe moderate pain wise. Crazy how just an aura can prevent you from doing anything.

Signs the pain is getting the best of you...

- You have decided to hybernate for the winter.

- When all your social interactions come via Facebook.

- When people say they sometimes get pain like that when it rains and you want to choke them.

- When you spend all night tossing and turning, trying to find that exact position that does not cause pain and fail.

- When leaving the house to run an errand is an event worth celebration.

- When you fall down you decide to just lay there for a bit contemplating your existence.

It is nice to have a break...

Being as I am on new sleeping pills as well as a painkiller that last 12 hours, there have been days when I feel migraine free mostly, but also sleepy and sluggish. It had been great even though it is temporary. And it seems every time I go outside or into floresant lights it amp up a migraine in no time flat. So obviously being all drugged up is working for me.

Not so much today mind you, as a nasty migraine sprung on me in the evening, but since they are not daily with these meds and I am at home and don't have to work tomorrow well it can be handled.

Invisible Disability Awareness

We are embodied beings. All of us. But what then is distinct about the lived experience of pain? What is it like to have your life and choices filtered by pain, limited by pain and yet be invisible to others? I will tell you what it is like. It sucks.

Yes, it sucks. There I said it. Like so many others with invisible disabilities I have danced, no, shuffled though life with this awesome mask of well being on. This carefully constructed fa├žade I wear so that I do not exhibit any of the pain behaviours that would make others know I am in fact in pain. There are so very many reasons why we create these masks. First of all, to look like I am suffering all the time, while accurate, makes other people uncomfortable and eventually doubtful. It makes me feel like I am a chronic complainer or whiner. It does not help and in fact hinders my ability to function without it. It helps me repress that core emotional anguish we carry in us that we have to endure such things.

Masks crack sometimes and the pain shines through. Is it fair that we must endure such suffering while trying to work just to make other people comfortable? No. It sucks. The very fact that we feel compelled to mask our pain and try to live the life society and our families would like us to is ludicrous since we merely compound our own suffering to put others at ease. Are we not invisible enough without compounding it with our silence?

So I say it stops now. Say I am in pain and it sucks. Shout it out! ’We are in pain and we won’t stand for it any more’. Set up a protest at your doctors office and pelt doctors with empty prescription bottles. We will not be invisible. It is not our job to make others feel comfortable around our suffering, not when the world demands so much from us, thus not letting us at least minimize our pain. The definition of invisible is not non-existent. Non-existence means does not hold the trait of existence within, does not exist abstractly or concretely in the universe. Invisible simply means cannot be perceived visually. I thought that would be rather self explanatory.

If you suffer from chronic pain I beg you to show it. To speak of it. Do not make yourself worse in order to ‘pass’ as normal. It never works. You cannot have ambition like others. You cannot set long term goals like others. You cannot be the model employee, raise your family and care for your home like others. Your whole existence is defined by the limitations and lived experience of pain. Own it, don’t let it own you.

I talk the talk, but I do not always walk the walk. I feel genuine outrage though that those of us with chronic pain, invisible disabilities, are forced to suffer in silence. Does it really come as a surprise that depression is always ‘co morbid’ with these conditions? A person would have to be mad, or a masochist, to endure such pain day after day, with little to no relief for an indeterminate amount of time and be all cool with it. We are talking pain that does not have an end date. Where pain is the status quo. Not pain that comes and goes, like a twinge in the old tennis elbow when it rains or a broken leg that can be healed.

Humans have an amazing capacity, with the right medication, to handle extreme pain for short durations. However, try mild to severe pain forever, without all the nice drugs and see how that works for you. Not so fun then is it? Okay, pain is not fun no matter what, unless you are a masochist. I wish I were a masochist. Point is, chronic pain is a form of torture and everybody breaks from torture eventually. I rather think we are entitled to a pity party once in awhile. Rant and rave a few times a year. Maybe publicly shed a tear or two.

So let us explore all the various facets of the chronic pain existence through personal experience, humor, slices of real life and some facts thrown in there just for fun. This is not to explain what certain conditions are… you can google that like everyone else. This is to delve into what it is like to be in chronic pain, to live in a pained body and what an Invisible Disability really means. And this is the time to Blog our butts off because this is Invisibility Awareness time.

I have Fibromyalgia which is an Invisible disability because it involves chronic pain and symptoms that do not cripple or otherwise show themselves physically. Secondly, I have chronic migraines which drastically effect all aspects of my life, but again is all about pain, which is subjective and therefore can be doubted by the outside observer. Because Fibromyalgia has in the recent past been doubted by doctors I have learned to minimize its effects on me because doctors were completely unwilling to help with it and I always got the impression they thought I was simply being dramtic is I dared to complain about my suffering. This habit has carried forward in my life and I do the same with chronic migraines. What I learned about suffering in silence was that it leads to fustration and isolation. Ironically what I learned from trying to fight for my rights as a person with a disability, and failing, was that it is really easy to try and kill yourself. And that there is a frequent concern for those of us with Invisible disabilities... we try to off ourselves. That is why spreading awareness of the cost to chronic pain is vital.

30 things about my illness you might not know meme

For invisible disability awareness please post on your own blog!

1. The illness I live with is: Fibromyalgia and chronic migraines
2. I was diagnosed with it in the year: FMS 1997, migraines 1998
3. But I had symptoms since: I was 8
4. The biggest adjustment I’ve had to make is: changing careers and struggling to hold down full time emloyment
5. Most people assume: If I can work with a migraine sometimes, then I must be fine to work all the time.
6. The hardest part about mornings are: waking up with a full blown migraine and intense grogginess and confusion.
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: nothing
9. The hardest part about nights are: horrible insomnia
10. Each day I take 5 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried chiro, massage therapy, pphysio, herbs, vitamins and likely more that I don't remember
12. If I had to choose between an invisible illness or visible I would choose: visible
13. Regarding working and career: I struggle to just hold down a job, but gave up my career of choice.
14. People would be surprised to know: I am in pain all the time, whether it shows or not.
15. The hardest thing to accept about my new reality has been: the fact my life has become so small, less socializations, unable to visit with family, struggling with work and no energy for anything else... even thought I try and often fail to do so.
16. Something I never thought I could do with my illness that I did was: go on a long trip to scotland.
17. The commercials about my illness: irk me 'don't fear the light' my butt.
18. Something I really miss doing since I was diagnosed is: being able to plan to visit people, can't plan on no pain or less pain.
19. It was really hard to have to give up: my career of choice.
20. A new hobby I have taken up since my diagnosis is: creative writing
21. If I could have one day of feeling normal again I would: go out and socialize and enjoy a night out.
22. My illness has taught me: the complexities of pain, the cost of pain and the way people view invsible disabilties... which makes me want to find a way to help us all.
23. Want to know a secret? One thing people say that gets under my skin is: "but you don't look sick"
24. But I love it when people: show compassion and sympathy.
25. My favorite motto, scripture, quote that gets me through tough times is: don't sweat the small stuff cause its all small stuff.
26. When someone is diagnosed I’d like to tell them: tricks and ways that might help them go through the coping process faster instead of the hard way.
27. Something that has surprised me about living with an illness is: how it changes the way you move in the world, your world view is entirely different.
28. The nicest thing someone did for me when I wasn’t feeling well was: one night on christmas eve I was working, got an acute migraine and became violently ill, my boss helped out and then a former employee offered to come and take my shift so I could leave. He stopped what he was doing and just offered up his time to work a job he has not in years for someone he did not even know.
29. I’m involved with Invisible Illness Week because: Because people do not understand the cost to chronic pain, how it affects all aspects of our lives and those we love.
30. The fact that you read this list makes me feel: engaged and proactive.

Sigh... rant is now over

Back to the real world and real world concerns.  It is frustrating to have a chronic illness that is so limiting.  It forces me to look at everything I do and conform it to my physical well-being.  Which is, frankly, annoying.

A) Me:  what can I do to make me feel better?  Well, lots of little things.  We all try the little things, sometimes repeatedly.  For me massage therapy and a chiro are not a choice due to that finicky FMS that does not play well with the troublesome migraines.  Contrary.  What I do do is eat small meals all day, starting with a yogurt in the morning (yogurt is like a super digestive food that helps me lose weight for some reason) and I take a vitamin supplement of calcium, magnesium and vit D.  But then there are two bad habits that compromise my health that I need to boot: my diet coke addiction and my smoking.  I have decreased my diet coke intake with water and tea, but want to focus on the smoking first.  Do I think anything I do will cure me?  Hell no.  It is about teeny tiny improvements that make up the huge picture.  And since with my migraines being as chronic as they currently are, I can't tell if anything works, so I have do just assume they are doing something, even if just helps me feel like I am doing something.

B) The support team:  Chronic pain takes a team approach.  The doc, the neuro and anyone else you think helps.  In my case I am adding the shrink and will be going to a pain clinic.  Complementary treatments that I hope will help me with some coping.

C) To work or not to work?  I just don't know about this one yet.  I am all for finding something part time and/or doing volunteer work.  I just don't like the idea of giving up my job.  I figure I will be on the fence on this one.  I figure with a long term leave from work plus all the other work I will be doing to improve things may make me 'good enough' to work again.  At least give me a chance anyway.  Although it has sunk into my head that doing what is good for my health is better all around, so I will not stubbornly figure I need to work full time just because that is what I think I should do.

D) New routines: I have been feeling kind of lethargic this week.  I don't like doing nothing.  I have always thought with FMS pain anyway, that reducing what I do makes me unable to do more and makes me sluggish physically and mentally.  Obviously doing too much does not work either.  I need to set up a strict routine so that I do not succumb to this, because doing literally nothing all day is a sure fire way to get depressed.  I need to get up at the same time every day.  I need to focus on something, like housework.  I need to add some sort of activity, aka exercise, to replace the lack of work.

I have a huge migraine right now, so not the time to be planning much of anything.  Still, no rest for the wicked.

What can we learn....

Rate a suicides with migraines

Past research has shown that rates of depression and anxiety more than double among people who suffer chronic migraines. Even more striking are the suicide rates: almost one in four women and one in seven men who experience migraine with aura, a visual or neurological disturbance which precedes headaches in 15 percent of sufferers, attempt to take their own lives.
1 in 4 women with migraine with aura?  Well, now those are not good odds are they?  So much for that concern over stroke risk... we should be more concerned about that fact we are killing ourselves off.  So what does this tell us about chronic migraines?  That they suck?  For sure.  That we are still suffering?  Yeppers.

What is it we do when we cope?  What is the inevitable process involved with handling chronic pain?  Well we adapt to survive.  The function of pain is to alert us to a problem so we can fix it, since with chronic pain we cannot fix it, we try to limit it.

1) Shrinking:  The first thing to go, is our leisure activities, because they are not necessary and are not fun when you are in pain anyway.  Consequences can be that this will make us feel more isolated and alone.

2) Sacrifice:  This can come in many forms but what it comes down to is giving up something you wanted to do or accomplish because it can't be any more.  In my case, the desired career.  While this is all necessary it can be a blow to our self-worth. 

3) Compromise:  We find many, many ways to work around the pain.  Finding a job we can do, instead of the one we want.  Forgoing our ambitions because less stress is better.  Everything is structured around the pain.

4) The Facade:  Now the facade is necessary if you work with chronic pain, but also helps with family.  You see thinking about and dwelling on your pain makes it damn hard to get anything done and you feel miserable the whole time.  Like if you wake up with a nasty cold and think this work day is going to be hell, but if you go and get into the day you begin to feel better.  You are literally distracting yourself from your pain and masking it from others.  It is absolutely vital to do so, but has its consequences.  People may not understand you are in pain all the time, rather than just occasionally, which makes you feel like people do not understand.  It may increase the feeling of isolation.

All right we do all these things and we go through, denial, frustration, depression, compromise and acceptance.  We find that balance but the life we had is no more, it is a very small life we have now and it is centered around pain.  Good pain days.  Bad pain days.  It takes so very little to tip that balance.  One extreme stressor of any sort and we may feel overwhelmed by the pain and our inability to see an end to it.  Many of us on a very bad day may have suicidal or self destructive thoughts, that we may not act on, but are there nonetheless... you add in a stressor and that can easily lead to suicide.  1 in 4 women with aura with migraine.  This is huge.  This is rarely talked about.  This is why people need to know the price of chronic pain.

Got my head shrunk today

Yep, I talked to a shrink over the phone, as a preliminary interview. It rather surprised me, since in my experience shrinks tend to blame everything on depression rather than considering the underlying physical disease and the cost of chronic pain. Why would that be helpful? It wouldn't. But I was willing to go through the motions. You do the act and you havta pay the consequences. However, this dude talked more about my migraines, how I cope and how it affects my work situation. He himself gets nasty migraines and he discussed some ways he copes and some methods people use. Naturally this is a familiar topic, since I have developed several ways to cope. He talked about my work situation, which is not ideal and how to change it. He basically said if they were not willing to compromise, which they are not, then it would be beneficial to apply for long term leave and then possibly AISH assistance after. Since if it is impossible for me to work there 9-5 then it would be impossible anywhere else, assuming anyone would be insane enough to hire me. I told him of all the career compromises my health has made me do to which he said it is difficult for well educated people to give up their career goals and to not feel damned guilty as well. He said it would make a huge difference if I was on assistance and did a part time job or volunteer work... which would give me something to do, a distraction and help with my self worth. And when he put it that way, well, then yeah I guess literally killing myself over my job was not working so well from me, nor the guilt I got when I missed work and nor am I capable of working all the time. So while I thought I couldn't make any other work related compromises, that a desk job was the ideal job and nothing would be better than that for me, it turns out I have yet another compromise to make. Every such compromise takes a little something out of you. For example when I could not go for my Phd and my ideal job I had to accept that but I felt I could find something I enjoyed and was meaningful. With the bank I found something I could easily do, when with migraines (just not all the time), I could distract myself from the pain while they were willing to put up with my increase in absences and I thought yeah here is something I rather like to do and is a career and makes half decent money. But they ended up demanded more than I am capable of giving and made me feel worthless while they were doing it. They totally f-ed up my balance, because working with chronic pain takes a certain mindset and one that does not dwell on the pain, even when you have it. But when you take away my ability to miss a day, or half a day or whatever and expect perfection, well then I immediately felt angry and trapped and frustrated. Changed my mindset and that made every day worse and those status migraines became a tormenting nightmare with no possibility of relief. So then that spirals into negative thinking... like, well, if a status migraine that could potentially kill me is not a good enough reason to miss work then what is? A stroke? A self induced coma? Or can I just call in dead.

People may wonder why I would let work drive me to that extreme, but it is all too easy. A lot of our self worth is tied up in work and being a functional part of society. A lot of guilt is a product of chronic pain and what we can't do. So while we are coping well we have done our compromises, adjusted our work environment and maintain a healthy facade, handle minor stresses well and we distract ourselves from the pain, not brood on it. And damn we are proud of ourselves for being able to work under those conditions. Of course sometimes we are literally incapable to doing so, or driving or moving. And such absences can make management get into a huff. They can put additional pressure on us to tow the party line. They can misunderstand our ability to function with pain as not having pain all the time and worse at other times. They can make threats to our job itself, promotions or demotions. And that immediately causes a huge stress factor we cannot escape because we are limited by our pain, we can cope but we cannot completely deny it. This makes us more emotional. More frustrated and angry. More trapped by the pain, with no escape clause to be seen. And yet when confronted with this situation most people do exactly what I have done time and time again. We don't fight the job, cause we can't win and they won't compromise, we fight the pain. We try to 'push' through it. To not distract ourselves, but to completely deny it. All in order to hold down our job. We all have awesome pain tolerances, well earned ones, but forcing ourselves to power through even severe pain fails. Because it is impossible. Mentally, emotionally and physically we get battered by doing this and when we know we are failing we feel that much worse. Something has to give. Something has to snap. usually I go on leave from work, but what has that done? Nothing. Pain is still there, still chronic and will be there on my return. All it does is give me a break from it, give the the will to fight again. And then it starts all over.

Here is the clincher. He may be right. Hell, I'll admit he is right on the mark. That does not mean I will be able to get on long term leave or AISH. That is out of my hands and partly in my doctors hands. The reason I have never considered those options is because they were never presented to me by my various doctors, ergo, I assumed they were not options and I simply had to continue my struggle and hope for a preventative that worked even better than the best expected results of a fifty percent reduction in migraine frequency.

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...