Bad migraine flare today...

I missed work today... and actually it seemed my body made up my mind before I did, since I failed to hear my alarm ring for forty minutes and woke up already late.  I remember waking up really slow wondering what the noise was and was shocked to realize what time it was when I figured out it was the alarm.  It was an insanely strong migraine, so I called in sick thinking some much needed sleep might kill it and I could go in later in the day.  Nope.  Slept quite a bit and woke up with it still there, just as strong and just as mind numbing.  And I had things to do today and two meetings, so feeling guilty about that and will not have fun tomorrow.  But I just could not do it.  It was that painful.  Around 7pm it tempered a bit, likely from the painkillers doing a decent job, but I still feel like I have a bruise in my head and my stomach still has not settled.  I was really trying to not miss work until I saw my neuro in december, but so much for that plan.

This brutal migraine is the continuation of a migraine I had all yesterday that really kicked up before bed, so I did not get to sleep right away and when I did I had some vivid, chaotic and disturbing migraine nightmares.  So did not have the best sleep, which is likely why it hit me so strong in the morning.

Driving and migraines...

http://www.healthcentral.com/migraine/c/11175/85090/migraines-driving

Yep, always a concern for the chronic migraine sufferer.  I admit it is extremely difficult to work with chronic migraines.  We all know migraines can make us incapable of doing anything, but we also know that treated migraines, or half treated migraines, or mild migraines or silent migraines... are an entirely different story.  We are expected to function with these.  Expected to because no one says we can't and does not offer us any better solution, so we do the best we can.  Likewise with a full blown migraine, driving is impossible, but in those other cases not impossible, but obviously effected.  For example my most predominate visual aura is visual snow, and it is always there, but sometimes more extreme... so I see billions of little sparks of light zig zagging, flashing and darting around in my field of vision and it makes everything rather like a monet painting and distorted.  To drive at all, I need to wear sunglasses, as this dims the visual snow.  Other most obscuring auras can be worse.  That is just on the purely visual side of things.  Pain of course is a distraction, but pain is something I have to deal with all the time, you can't rightly say I cannot in one situation and expect me to in other situations.  The migraine fog through is the worst... sometimes the lack of attention, something the tunnel thoughts, sometimes distraction and sometimes... like with forgetting words, I have forgotten the rules of the road temporarily, I certainly have problems with thinking left is right and right is left.  Sometimes I forget the names of objects, likewise sometimes I see a stop sign and forget that it means stop.  So should I drive with a migraine, heck no, do I, heck yes.  How else am I to get to work, which I am expected to do no matter how much I am suffering?

My response to the forum topic on this is:

I agree we should not drive when having a migraine. However, as I get migraines all the time, it would be hard not to when I have to get to work. I also consider myself impaired at work, but I still go. The fact is that if I am considered impaired by a migraine or migraine treatment, which I am, and therefore should not drive, then it only seems logical that if I have chronic migraines I am impaired most of the time. Yet, it is difficult to get leave from work, or get full disability for migraines, when it seems people do not consider it to be all that serious. If it is not considered a serious disability, with serious impairments, then I myself will try to 'get through' things when the migraine is not killer, or I am taking a treatment for it. If it becomes habit for me to try and function through the pain, the senory problems and the migraine mental fog, then it would not be any different for me to drive under such conditions. I have had doctors in the past say I could not do certain jobs, but no doctor has said I cannot work, which implies that I should be able to work. If they considering me capable of functioning at a job, any job, then they cannot rightly say I am incapable of driving. I would disagree, but since my vote does not always count, and I need some sort of income, I do work and therefore I also drive. I likely would not do so if there was alternative transportation where I live, because driving is not pleasant even with the mildest of migraines. There is some faulty reasoning if the law says you cannot drive with a migraine or a migraine treatment, but are somehow capable of working a full time job. It seems since driving could potentially effect other people that people make a point of it, not when things effect the person actually suffering from migraines. Still, I do agree that I should not drive most of the time and I know very well it affects my driving. The fact is, no one has ever made a point of it except me. Ironically, when I have taken a triptan and am driving I am way less impaired than if I am driving with even the mildest of migraines. Again, no doctor has said any of my medications would prevent me from driving. A further irony is that my mother is taking pain killers while awaiting for a surgery, and he doctor said she could not drive nor work while taking those pain killers... and I take stronger painkillers, triptans, preventatives on a regular basis but am essentially expected to carry on as normal. So that is exactly what I try to do.

Allrighty, I stopped procrastinating and forgeting

I finally made a neuro appointment.  My chronic migraines have been exceptionally chronic since march, or maybe before, but definately since march.  The only thing that has helped me survive work with these things is pain killers... and really, when it comes down to it they don't do enough.  I have been lately taking my abortive beyond the three times a week rule, because I forget how many times I have taken it until i start getting chest pains.  Plus triptans kick ass over pain killers any day of the week.  Still, now my lungs feel like I have a wee kick boxer in there trying to get out and that sort of piercing chest pain that is rather unpleasant.  So yesterday I did a drug free day, which, as you can imagine, was not exactly fun.  I thought a break would mean I could take a triptan today, but the side effects of that, ie the whole kick boxer in the lungs, hit me quite quickly and that suggests I need a bit of a break from that triptan.  The two options would be another triptan free day and then switch to my alternate triptan, as it does not have the same side effect, or stick to pain killers for at least a few days.  That is why I made a point of calling the neuro.  When one migraine leads right into another and I am just trying to play catch up, then I know I am on that slippery slope to hell in a hand basket. 

Unfortunately, my neuro appointment is not till Decemeber, which seems like so very long to wait.  I am having some troubles getting up and getting to work now and that is never a good sign.  I desperately want to just have a day where I can get some extra sleep, maybe sleep off the migraine and just have a fricken break.  Unfortunately, I desperately want this every day.  If I do it once I will want to do it again.  I am already calling in sick more often than I should and having some half days as well... just because sometimes I give in and just can't do it.

So I will go to the neuro in Decemeber.  Which, obviously, will not immediately help or might not help at all.  Changing my meds, I have experienced the hard way, can sometimes make things way worse.  Small adjustments may do nothing at all.  What I do know is he cannot help me the way I want to be helped.  he cannot get rid of the pain.  There will always be pain.  So, I will likely not be in a great mood after that appointment, but hopefully we will find something useful to try out.

Missing my mind today

There is a point when memory glitches are less glitches and more a state of mind, as in a permanent state of mind.  Being forgetful is one thing, but forgetting to do important things and not even remembering later is quite another.  I forgot to pay the bills last month and had no idea they were not paid until I paid them this month.  I forgot I posted my last entry on here and was going to do it again... which would have been a tad bit confusing.  I have some serious problems with facial recognition... in my line of work I meet a lot of people, associate with them for a short term and can't be expected to remember them all.  I really don't remember any of them.  I keep getting people coming in and greeting me by name and I have no clue if I know them from work or elsewhere, they don't even look vaguely familiar.  I do recognize names, although don't connect them to faces and it takes a bit of jogging to get to the point where I can connect the name to the business I did for them.  Thank god for computers.

You have to wonder, after awhile, how long your going to be able to keep functioning enough to work.  I certainly wonder.  Thirty some years to retirement and I am already struggling.  Constant migraines mean constant neurlogical problems.  Problems speaking, writing, communicating, remembering, consentrating, seeing, hearing....  Granted, sometimes, it is very noticable and difficult, sometimes impossible... but I am not even taking about complete brainless blogger days, I am talking about every day, even days that are good and the abortive worked and the pain part is not even an issue (there are days like that... damn good days)  I can pass on paper.  I do my job well enough, but it is like wading through fricken mud in my brain.  Stuff leaks through the gaps.  Literally when someone leaves my office, they fall right out of my brain... they can come back a half hour later and i have no idea who they are.  I wait for people to tell me why they are there so i can remember what the heck I am doing for them.  The reason I function is because I only see a certain amount of people per day and this rotates but is never high... so I can go through my active files daily to achieve the ends I need.  Constantly reminding myself of my work, but the people slip through the gaps.  Return customers are not return customers to me... might as well be a new one.  I suspect I repeat myself, and my conversation rollers, likely to the same people because I do not actually remember anything about the conversation, except what I have in the file.  My god, if there was not a paper trail and a computer I would be useless.  It used to be I would change my study habits or work habits to work around my health... and I still do, but I think my disability is winning on that score.  Might have to video record everything to keep up with myself.  I am the type of person that remembers what I read, which was awesome for school, but when you forget everything you hear and see it does not quite cut it.  Time seems to pass so quickly for me, but it is because there are months of time I cannot remember and most things are foggy at best.  When i think I did something recently, it could have been six months since I did it.

I have had a migraine since last Friday.  Started with a hormonal bang and then just kept going.  Same old story.... except with more nausea this round.  Then I wake up Wednesday and I am out of it.  I have a whopping morning migraine, I have nausea and for added fun vertigo.  So I call in late... because I could not remember if I had any important appointments, I did not want to call in sick, plus I could not remember the last time I called in sick, but I suspected it was recently and I like to space those out so it is not so blatantly obvious how useless I am.  So I go into work and I am thinking I must have been insane to come to that conclusion.  I was very queasy, could not walk straight, the world was spinning and I could not seem to get my eyes to focus.  It was difficult but I did manage most of the day.  How useful I was while I was there is debatable.  I got stuff done and frankly that is impressive enough.  Thing is, every migraine is different and every one of them has the potential to have some whopping neurological effects.  I can't miss too much work, ergo I work with a lot of migraines where in some way or another I am not all there.  So how long can I keep that up before it becomes that I cannot do my job?  Obviously no one in there right mind would want to work with migraines, or leave the house during the day or move, but wants and needs do not always meet.  Unfortunately I am dang close on the can and cannot line as it is.  I am taking too many medications too many times to get where I am and I have to force myself not to take one or the other in order to not take them too often, when I need them all the time... so when you have a acute migraine while at work and cannot take an abortive, that is not the sort of cannot that is acceptable since working and an acute migraine don't do well together.  I have two abortives that I switch off on, so as to confuse my brain so they work better, but you need to have a 24 hour period between abortives.  Did I mention my lack of a memory?  That goes for medications as well.  I keep to a routine when taking them, so that later when I forgot if I actually did take them I am reasonably assured I did, since I stick to that routine.  However, with abortives or painkillers, which are as needed, I do forget.  I forget if I already took an abortive in the morning and if so what time, or how many days in a row I have taken them and if I can switch to the other one or not.  I think sometimes I take them all week without remembering until i start getting all that chest pain stuff and the need for more asthma medication being the warning sign that maybe I forgot that three day rule.

The fact is I am tired.  I wade through work barely conscious and when i get home I just want to sleep.  Lately I get home and if I do not sleep, I might as well be, because I am utterly brain dead.  Zone out.  Nobody home.  I don't quite understand what is in it for me.  Work thirty more years till retirement, so I can retire, and then I will not have to suffer so much.  Umm.  That means thirty more years of suffering, not doing anything else but getting through work and living in a sort of weird timeless haze where you don't even remember a good portion of your sad sad existence.  When you consider life expectancy, which I suspect I am not on the high end of, how many years of blissful retirement do I get to make up for the torment of working from adult onward?  Ten if I am lucky?  That does not seem like a viable return for my investment.  If I were an investment the return would not be high enough to attract anyone for the risk ratio.   I need some sort of pain and suffering karma compensation so that in the next life I will be born a billionaire with perfect health and super awesome luck.

National Invisible Chronic Illness Awareness Week

Shared by Teri Robert (thank you) - and completed by me:


30 Things About My Invisible Illness, Migraine, You May Not Know



Anyone who has Migraine disease or another headache disorder knows what it's like to live with an invisible illness. People can't see our illness. There are no outward signs. Invisible illnesses are easy for "healthy" people to ignore. This adds to the burden of disease and makes lives even more difficult.



Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know. So, here's my meme...



1. The illness I live with is: Migraine disease & Fibromyalgia

2. I was diagnosed with it in the year: 1997

3. But I had symptoms since: 1980

4. The biggest adjustment I’ve had to make is: trying to find a job I can hold.

5. Most people assume: that Migraines are "just headaches" and that FMS is just 'muscle pain'

6. The hardest part about mornings is: getting out of bed and thinking clearly

7. My favorite medical TV show is: House... wish he could figure me out.

8. A gadget I couldn’t live without is: Internet

9. The hardest part about nights is: Trying to fall asleep and get comfortable.

10. Each day I take: a fistful of meds and vitamins and pray I get through the day

11. Regarding alternative treatments I: Done that got the t-shirt, forgot I tried it and tried it again.

12. If I had to choose between an invisible illness or visible I would choose: visble... less need to explain.

13. Regarding working and career:  It is diffiuclt to have a career, or career goals when it is hard enough just to work consistently.
14. People would be surprised to know: I am in a lot more pain than it seems.

15. The hardest thing to accept about my reality has been: is that my life has become very small as I am unable to do many of the things I could or go to events.

16. Something I never thought I could do with my illness that I did was: Went on a trip to Scotland, which was far less painful than I expected, which just shows you Lyrica does do something for FMS

17. The commercials about my illness: annoy me.

18. Something I really miss doing since I was diagnosed is: too many to count.
19. It was really hard to have to give up: Going for my Phd, having children.

20. A new hobby I have taken up since my diagnosis is: same hobbies... writing.

21. If I could have one day of feeling normal again I would: Do a happy jigg and then go out and party like there is no tomorrow.
22. My illness has taught me: that there is no need to be guilty and slow down, as long as you are happy, with less pain, life does not have to be high speed and large goals.

23. Want to know a secret? One thing people say that gets under my skin is:  people who are whiners when what they are whining about (headache) when I have a (migraine) and not whining.
24. But I love it when people: want to comprehend what I go through

25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass.
26. When someone is diagnosed I’d like to tell them: Sucks to be you.  Seriously.  Then I say learn to pace yourself, learn to limit yourself, learn to compramise and you will save yourself some pain.
27. Something that has surprised me about living with an illness is: how much time I seem to lose.

28. The nicest thing someone did for me when I wasn’t feeling well was: when my brother and bf said I should not feel guilty, that I did not need to work until I could and it would all be well.

29. I’m involved with Invisible Illness Week because: because it promotes awareness, that it tells people they are not alone and because it is important for people to understand even without any obvious disibility an invisible disability can be crippling and life altering.

30. The fact that you read this list makes me feel: like maybe we can bridge the gap between pain and language.



Please participate if you haven't already by answering these questions on your blog to keep this going. You can find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com.

If it is not one thing it is something else

This FMS pain, I assume, is what is causing pain in my feet and wrists.  I have gotten a script for an anit-inflamatory cream which helps if I apply it three times a day.  Can my doctor explain this weird flare up of specific pain... no.  So, hope it goes away.  But it is not just that.  I find it difficult to do things that were not so difficult before.  My muscle endurance is shot, and my legs weak.  Keep getting those tingles and arms and legs falling asleep.  I totally drained myself washing the bathroom today, not to mention gimped up my already gimped wrist.

Migraine wise I had a few days off... which was a pleasant surprise   Then hormonal migraines.  Which are always brutal, but this time seeming to not last too long.  Three days instead of six.  I think this fall weather is awesome.  It is not too hot, not too cold and that is what my body likes.  There there is a season where the migraines are not so over blown.  Unfortunately, it is a short season.

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...