Something interesting about light sensativity

This Irlen's Syndrome is quite interesting.  It explains how, in my case, I am always extremely photosensative, have issues with glare, visual distortions when reading and such.  And why I like to read in dim lighting and in fact read better and concentrate better in dim, indirect, lighting.  In fact I answered yes to almost every question on that check list including my issues with depth perception and driving.  But I never had comprehension problems, reading problems or academic problems.  I simply read very fast and don't mind the halo'd aspect to it as long as the lighting is dim.  Plus, I used to have an excellent memory for anything I read, but as the migraines became chronic that went out the window and I had to find careful ways to focus while reading in order to retain everything.  When I was in university I used to highlight as I read so that my eyes would not skip lines or skim over things.  I like how it also explains my extremely messy writing, inconsistent spelling, difficulties proof reading and how my writing slants upward.  However, whether I or some of us FMS/migraine sufferers have this problem, or I believe symptoms with potentially the same solution, or not what is fascinating is the treatment.  As I have mentioned in the past there was research done on rose colored lenses and red contacts that shows evidence that helps filter out blue light help with light sensitivity and can help therefore with migraines.  And the ones I have do help with the strain on my eyes at work, with the hazy halos, with the warbling of words as my eyes get strained and with the painful-cant-even-see in the sunlight.  I think I would benefit from a darker tint myself.  And this syndrome is all about finding the tint overlay that would make a person be able to focus better without the strain.

Irlen's Syndrome, was initially called Scotopic Sensitivity Syndrome. It was first identified by an Educational Psychologist named Helen Irlen in the 1980's. She wrote a book called: Reading by the Colors (Avery Press, 1991), to support individuals with Irlen Syndrome. The exact cause of Irlen remains unknown. However, it is believed to originate in the retina of the eye or in the visual cortex of the brain. Individuals with Irlen Syndrome seem to see words that are blurry, have patterns or appear to move on the page. As the individual continues to read, the problem seems to worsen. Colored overlays and filters are used to help individuals with Irlen Syndrome because they sometimes appear to reduce the perceptual distortions and visual stress experienced by 'some' children during reading. Research in this area, however, is quite limited.

Symptoms of Irlen's Syndrome

•Trouble reading words
Headache while reading
•Weaker academic performance
•Weak concentration
•Complains of eye strain while reading
•Tires while reading
•Depth perception is much weaker
•Will also affect math performance
•Often exhibits sensitivity to lights especially fluorescent types
•Trouble focusing
•Weak/poor comprehension
•Difficulty tracking words on a line and will often skip words
•Reads in a strained word by word fashion and with great hesitancy
•Avoids reading
•Weaker written work
•Trouble copying
•Random spacing
•Ramdomletter sizes
•Writing up or downhill
•Inconsistent spelling

•Research at the University of Birmingham in England showed that many migraine sufferers are sensitive to the flickering from fluorescent lighting, TV screens, and computer monitors. The study found that wearing colored glasses reduced the frequency of migraine headaches by 74 percent. Other research indicates that about one in five individuals could get relief with colored glasses. A preliminary study conducted at the UT Houston Medical School with 30 migraine sufferers found that 27 of them were helped dramatically by colored contacts.

•Evidence that symptoms of headaches and other symptoms of strain can be reduced by the wearing of Irlen Spectral Filters which alter the wave lengths of lighting comes from a variety of studies (Bulmer, 1994; Chronicle & Wilkins, 1991; McLachlan, Yale & Wilkins, 1993; Cilkins & Clark, 1990; Wilkins, Nimmo-Smith, Slater & Bedocs, 1989; Wilkins & Wilkinson, 1991).

•There are numerous surveys of subjects who have used colored filters for periods of six months to six years. Reduction in eye strain was reported by 78% to 86% of subjects in studies by Burgess (1990), Westergard (1993), Whiting and Robinson (1988), and Whiting, Robinson and Parrot (1994). Stokes and Stokes (1990) found 45% of subjects reported reductions in headaches, while Fricker (1989) and Schaffer (1994) also reported a reduction in headaches when using Irlen Spectral Filters.

•A preliminary study by D.W. Riley and A. Wright (October 2000) comprised 30 people ranging in age from 10 to 60+. The diagnosis of migraine was by doctor or specialist for 21 of the subjects, with the remaining 9 being self-diagnosed. All the subjects had been assessed for Irlen Syndrome and had been wearing Irlen Spectral Filters for 6 months to 5 years. For 83% of people in the study, Irlen Filters reduced the frequency and severity of their migraines.

I don't believe I have this syndrome or another freaking syndrome... but what if having chronic migraines with persistent migraine aura, giving you similar Effects could be be reduced with color filters? It intrigues me. 

Sometimes I remember how vital it is to have an outlet

In philosophy there is this concept of the 'look of the Other'.  The idea is that when you are aware you are being observed you change how you behave.  In some cases preventing someone from doing a crime in other cases simply curbing your freedom to express yourself, so you are not seen as silly or childish.  For those of us who are chronically ill there is always this feeling if we mention anything, serious or self-mocking, about our illness people don't want to hear it.  They are tired of hearing it, they think we are chronic complainers, they think since we are not screaming we are not really suffering, they think we are lazy or they simply do not care one way or the other.  I loath that disinterest.  It makes it seem like this constant war, the handful of medications, the dozens of symptoms and/or side-effects, that all consuming fatigue and all that pain is worth nothing, not even mentioning. I am no pity whore, if I was, there would be no damn reason to get out of bed and go to work.  Instead I find reasons and cling to them desperately so this all is worthwhile, because lets face it when we are alone and we ponder it all we need all the reasons we can make up to continue.  All that disinterest makes a person wonder if it is worth while after all.  I don't know what I expect from people and frankly I think I should expect nothing at all.  The point is, being aware of the Look from Others whether that is a loved one, a friend or co-workers inhibits our openness about our condition.  Makes our hard earned success not worth mentioning at all, like all that effort is seen as easy or simple.

We become disinclined to mention anything about how we are coping to anyone.  So while general indifference to our pain rather sucks when we are trying so damn hard to do what we are doing while not showing any outward sign of the toll it takes.  What is worse than that is it encourages our silence which then simply encourages others to believe for some reason our chronic illness mysteriously vanished simply because we do not look like we are suffering or mention it in any way.  That there silence is extremely dangerous.

Yet when I see that look in peoples eyes I simply want to stop.  Stop talking, stop laughing and just get through it so I can get home and forget about it all for a few hours until I have to go through it all again.  And I love to laugh, it is the only coping mechanism that actually helps me lie to myself better.  There is not much to be done about it though.  No point in expecting things from others, since the strength to endure comes from within.  Sometimes that damned silence feels like it is choking me.  I know exactly how dangerous it is because I am damned good about lying to others, living with that facade of well being, so firmly established no one can tell I am getting worse, until it affects my ability to function all-together.  That I feel it is necessary to do so is because I know all about those Looks from Others that compels me to pretend all is fine, or good enough.  It sucks that we are encouraged to suffer in silence and it sucks that Others make us feel that it is in fact necessary.  I would hate to be perceived as a chronic complainer, and yet, I know sometimes I likely am seen as such.  The irony of that is I may mention a bad migraine, or some of the more annoying symptoms, but only when they are bad and I never mention mild to moderate migraines and I most definitely do not mention anything to do with FMS pain.  If I mentioned all that fun I most definitely would be a chronic complainer, even if it would be an accurate description of my health in the moment.  And, damn, wouldn't that be depressing to list all that off.  No thank you.  I know people could not care less, so I keep all that to myself, but yeah, when it is bad, I do mention it.

It just makes me aware of how vital health forums, blogs and support groups really are.  It is not just that we know we are not alone, or that others can have helpful pointers it is also that we can complain about some simple aspect of our health that made the day difficult, or a simple success that made the day awesome without having to endure that Look.  It is such a relief to be able to do so.

Things never to do with a migraine...

1) Cough
2) Sneeze
3) Look at the sun
4) Spin in circles
5) Play word games
6) Enter a tongue twister contest
7) Touch your toes
8) Give someone directions
9) Go to a job interview
10) Go to a rave and/or rock concert

Deafeated the migraine but not the brainless part

I had a wicked migraine kick in at around 12am today, at work, which just a joy.  It started with some vertigo that made me feel like I was about to topple out of my chair then about half hour later full blown migraine beast.  So I treated with my triptan and a tramacet, which effectively knocked down the pain to minimal.  Unfortunately it made me feel even more sluggish and did not kick that brain in gear at all.  So I spent the whole day confused at why the wrong key did not open door or start car, forgetting the day and month for every application, forgetting what I was saying while I was saying it combined with a bonus of word forgetting or randomly using words that sound similar to what I meant but really, really do not mean the same thing.  Plus the vertigo really did not go away.  If I looked at the ground part of it appeared to be going one way and the other part the opposite, which makes a person feel dizzy since the floor does not generally move.  Consequently it was hard to focus on anything because it shifted and moved.  Plus a little hard to walk in a straight line.  And a little double vision just for fun.

Really one of those days that reminds you migraine pain is but one symptom of a migraine and if you can and do treat it effectively, sometimes the other stuff just keeps on going.  Sure does make things interesting.  However, this three preventative combo is definitely doing something... it was hard to say at first given my return to full time work means return to daily migraines.  And it does seem the hormonal migraines are still wickedly horrific.  But I have had at least one day a week without a migraine at all (not including the week or more of hormonal migraine hell)... which does not sound all that good but for my mood it is a damned heavenly break, and it is also a break from taking triptans and/or painkillers.

One of my new co-workers mentioned her husband gets about three migraines a month... and takes nada.  He just goes to sleep right away and kicks it.  And we all know sleep is a great way to kick a migraine.  Unfortunately work rather prevents that possibility.  Still, I felt sorry for the fellow since he has nothing to take if the sleep it off method does not work or is not possible.  Personally I would rather bash my head in with a frying pan than suffer through an acute migraine without my awesome abortive medication.  Sure it does not always work 100% or all day and I can only use it approximately three times a week... but it sure does work way, way better than any painkiller out there.  Who knows why he does so but it could be the general man loathing for doctors or a doctor who is an ass-hat, either or.

So this is now my work pattern; triptan, triptan, triptan, painkiller, painkiller, suffer thru it, suffer thru it.  You see I use weekends as not medication day to prevent rebounding.  So far this pattern hold because every Monday is migraine Monday, which starts the week with a blast.

Relationships with others

This month in WEGO health blogging is our health and relationships, specifically:

Your condition vs. yourself

Your condition vs. your love life
Your condition vs. your family
Your condition vs. the day-to-day
Your condition vs. technology
Your condition vs. misconception

Your condition vs. yourself - I do tend to focus on this one quite a bit.  That inner battle we face constantly.  That love hate relationship with our bodies.  When I am optimistic there is nothing I won't do to improve the quality of life I can have, but when that does not give me much of a life my pessimisim eradicates all my efforts pretty darn fast.  Life itself becomes a bit of a challenge and I think as a result we are more introspective, but that can also mean far more self-critical.  In otherwords, it is a very delicate balance.

Your condition vs. your love life - I am fortunate here since I have been in a long term relationship going on fourteen years now.  One that I was already in when I was diagnosed with FMS and then later when the migraines became chronic.  Now it could have gone either way.  He might have felt that my increasing lack of health and hermit tendencies held him back and maybe he would begin to resent that.  Or the guilt of not being able to pull my weight might have made me run.  But we stuck through it, but it is not without its price.  it is not easy on either party really and I find I try not to disclose the blunt truths of my health to him because he cannot do anything about it and best not to have him worry.  Many relationships break under the strain and like with all other facets of our lives we must make compramises because of our health.  Fact is, no one is healthy forever therefore health problems that occur are just another stressor on a relationship, like many other things.  If I were not in a relationship, however, and just in that dating stage I am not sure I would diclose my health issues right away, in fact, I would be tempted to hide them altogether like it is some sort of weakness or something.  Knowing this, if I were single, I likely would choose not to get into a serious relationship.

Your condition vs. your family -When we think of the price of chronic illness and pain we cannot forget the toll it takes on loved ones. Life is not a solitary activity and every life touches others in ways we can never completely know. Likewise suffering touches all those around us. I remember when my little brother had cancer and then when my spouse I felt an intense fear for their lives, but even more than that I hated seeing their pain and would have done anything to take it for them. And perhaps it is hard to see but others feel the same with my suffering. They likely feel the very same loss of control, being unable to take away my pain and don't know what to do or say to make it better.  The problem is trying to maintain a connection to family and friends.  Being a loner at heart I do not need as much human attention as most people do need which means it is all to easy to let family and friends drift away, without my realizing how much time has passed or how to correct the rift.  It takes a lot of energy to maintain this sort of relationship, or at least it takes a lot of energy to be a good friend to others and it seems I fall short on that side of things.  It is easier to maintain friendships with people that understand contact and socializations with me will be sporadic at best.  Nevertheless, it is a fundamental aspect to our well-being and we need to maintain those connections.

Your condition vs. the day-to-day - I'd call this coping.  Getting through the day for work and home is part balance and part distraction.  We need to have balance and to know when we are pushing beyond our limits, to understand what our limits are and still manage to get all the things done we need to do.  Such necessities as work require enough distraction to keep our focus off the physical health so we can get through the day.
  And I get through the week day by day trying to not dwell on the past or think on the future.
Your condition vs. technology -  I'm not sure all the electronic technology is on our side really.  With all the studies on Wifi, cell phone towers, cell phones and electromagnetic energy... sounds to me like it is not all that migraine or fibro friendly.  Nor is working at the computer all day under floresent lights.

Your condition vs. misconception -  Ah, the stigma how I hate it.  I don't mention fibromyalgia to anyone really because what people know about it is very little and it is often mocked as a psudo disease that enables people to go onto disibility rather than the complex syndrome it is.  So if I explain my health condition I tend to explain the syndrome first and then add the name.  With migraines it is a different story.  Many people understand what a migraine is, but cannot comprehend how I can function with chronic ones... because they cannot understand the process we all go through to cope with chronic pain such that we tolerate a great deal of pain regularly and only have a hard time hiding or functioning with worse pain.  I find it odd that people think that just because I am ill I should act sick all the time and all 'woe is me'.  That somehow laughing, which is a great way to mask the pain as less than it is, suggests I am not in pain at all.  Then I have strong issue with employers and work insurance companies that define disability as an obvious physical impairment such that pain itself is not a disability, which means it does not qualify for long term leaves of absence or any real effort on the employers part to compramise with work conditions... it is all or nothing with them.

Yes, we do not live in isolation... we always live in relation to others, our enviroment and our society.  Every single one of those is changed by chronic illness in ways that even we do not always see the effects and consequences.

Poor memory a defense mechanism? Maybe

It seems to me that my poor memory in some ways protects me from thinking about all that past pain.  Certainly thinking about future pain immediately puts me in a morose and fatalistic mood.  Just today I found myself thinking 'you do the crime and you do the time. failing to commit suicide would be the so-called crime and the the sentancing is life.'  Now that is negative.  But it is only then I stop and think and ponder and think more about the whole longevity of the situation.  Going day by day, with plenty of distractions means my mood is pretty much normal.  So thinking= bad.

It was one heck of a painful day yesterday and today.  My triptan did work today for about four hours but the migraine came back full strength, so really it just means the triptan helps me with part of the work day and little more than that.  So that kind of sucked.  And I think it is less about learning to cope with the pain and working and more about never letting myself think beyond surving This moment of pain and never letting myself think I have the possibility of calling in sick.  Which seems like denial of the situation, but the situation is that either I work full time or not at all and not at all is not an option... and as I said, thinking about that puts me in a bad mood.  Perhaps then I am denying the problem because I have no solution to the problem but to not think about it.  Unfortunately I am the sort of person that thinks a great deal, over thinks a great deal and I literally have to fill every gap in the day to prevent myself from pondering the long term consequences of working with chronic pain.  It certainly seems when I have time to think at night it tends to spiral into some serious negative thoughts, not nevessarily depressed ones, but definately pessamistic and fatalistic.

Everything happens for a reason

There are things people with chronic pain and illness hate to hear.  Like 'no pain no gain' because we know pain comes with no gain.  Or 'what does not kill you makes you stronger' and this is kinda true in the sense we are all stronger in our broken places but we have to be reminded that indeed it does not kill us and it makes us stronger in very unhelpful ways.  There there is 'but you don't look sick' which really is a huge bias people seem to have that suggests when you are chronically ill you should be miserable and behave as people expect the chronically ill.

But the saying I hate by far is 'everything happens for a reason'.  It annoys me to no end because people say this to suggest our personal suffering is for a reason that we might not comprehend.  Sure everything happens for a reason and that reason is entirely random and has no actual meaning.  I was not put on this earth to suffer even if all evidence suggests that.  I really doubt there is some grand design to my suffering but if there is, if there is some 'reason' for all this then that even pisses me off more quite frankly.  Nevertheless it does bring to mind the idea of karma.  I don't think karma has any effect in this life for no matter how much good vibes you project or do it does not come back to you, and the self-serving idiots out there tend to win in the end.  And if suffering all this pain in this life is supposed to teach me something, then I totally miss the message which suggests I will have to repeat this in the next life... and if that is not hell then I don't know what is.  Conversely, perhaps I was a horrifically evil person in a past life and this chronic pained existence is my punishment.  So when I hear someone say everything happens for a reason I really want to give them a reason to 'get' what I live.

The way it is

I know some people say they would not want to know the day they would die because they would not enjoy the time they had.  I beg to differ.  I wish we did come with an expiry date, just so I could know how much longer I am expected to be like this.   That at least would be a comfort.  This odd thought occurred to me when I thought about the thirty some years I have yet to go to retirement.

A co-worker and myself were complaining about medication and insurance today.  She is on long term leave for psychological problems... which I find typical... crazy gets you on leave easily but simple pain does not get you anywhere. Not that psychological problems are not extremely important to pay attention to and cannot be comorbid in fact, only that I find it disconcerting if you only have a great deal of pain you're 'good to go'.  We were mutually complaining though because the insurance company and payroll simply cannot manage to actually pay us. I'm back from a short term leave and being weaned into full-time hours and she is technically on long term leave but permitted to work a few hours a week.  As a result I earned a whopping 500 bucks for all of January and this payday was the same... so now they are behind by over 80 hours which will simply get worse now that I am back full time.  So not only do I have to endure work with constant migraines... but I am doing it for free too.  So incredibly frustrating.  Then I said it sure would be nice if all these medications I am taking would at the very least manage to do something, even a little something something.  It is frankly amazing that three preventatives, a pain killer and a triptan cannot help manage the pain nor make these migraines less frequent.  I think surely they must be doing Something, but it certainly does not feel that way.  My boss said she thought my eyes were clear today, so I did not look like I had a migraine and I thought to myself 'wow.  I have a killer migraine, but at least I don't Look like I do'.  Which either means my meds are helping me be clear headed or I am learning to lie better, more likely the former. Or perhaps it was just one of those really sharply painful migraines with less fogginess, where everything has a sharp edge to it.

Practically Comatose

I hate these hormonal migraines so very, very much.  It is like waging war and having to use every single weapon to just barely defend yourself.  The beginning was Saturday and it is still going on strong.  Problem is I'm not.  I am utterly and completely drained of every last bit of energy.  I drag myself out of bed and to work on pure will power... just that mindset that convinces yourself you have to fight for the sake of fighting and then on the other side, because there is no choice in the matter so you might as well grin and bear it.  I think I have been doing a fantastic job getting through the work week so far, but it requires taking my triptan early, which then means the migraine is back full strength mid-day, which then means taking Tramacet to at least dampen the pain slightly to get through the remainder.  Then get home and just crash and burn.  The things is, all that takes a load of determination and energy and today I felt tapped right out.  So completely fatigued I could not even think straight any more.  I always take a nap after work to just let my body relax from all the tension of tolerating pain.  You might notice this from working and tolerating pain; how your muscles begin to tense and even when you focus and relax them, moments later they are all tense again.  I find that happens a great deal with my shoulders, neck and jaw.  Nap time is just time to untense all the muscles and a last ditch effort to kill the migraine.  Doesn't matter though because I am completely wiped out.

And this is in fact the repatative struggle I have every month with the hormonal migraines from hell because you use the maximum amount of medication possible, hope you don't rebound and then just try to get through it which is damn tiring.  Being that I cannot call in sick or take a break every month means this can extend this time even more, as I become more tired, more tense and so forth it just triggers more migraines or, usually, leads to one hell of a status migraine.  Which makes it significantly worse than the rest of the month, which is bad enough but at least I can juggle medication I bit better.

So Wednesday is over, but I have maxed out on my triptans for the week and possibly gone one over since I forgot if I used it on the weekend.  While I don't usually rebound on them there is the fact when you have a status migraine, if the first triptan does not work then neither will the next or the next.  Also the more frequently I use the triptan the more adverse the side effects become.  So I have two more days left this week with only my lame ass tramacet to deal with the pain.  Bugger.  Hard to remember why I thought this was all worth while really.  At the end of such a day after such a week there certainly is no feeling of success.  Like Yah me I managed to suffer through another day and lived to tell the tale.  Rather it is more Yay me I managed to do what my employer wants of me, what my doctor said I was ready for and so that my family will not worry about it.  On my side of things there is nothing but getting to the weekend so I can finally do nothing while in pay and really not thinking about the next week and doing it all over again.  So therefore the cure for suicidal ideation is simply never, ever thinking about the future.

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...