Vacation time!

I have been off this week for holidays.  Purely not doing a damn thing holidays, which are the best sort really.  I have them strategically placed through the year to give me a pain break.  And it is damn wonderful really.  Just not having to do anything when I am in that moderate to severe level of pain.  People sure don't realize what we go through when getting through work in pain.  Having time off it like suddenly realizing all your muscles were tensed right up because suddenly they relax.  With a sigh of relief you know it is not going to be a bad day.  Even pain at its worst is not as bad as it would be at work for eight hours.  And I realize I can suddenly think about other things.  At work I have to have a very narrow focus to get things done.  Very focused on the task before me.  And I muddle through it best I can without mucking it up too much.  But without having to intensely focus on something I find I can think about other things.  My bain is not so drained for the day.

It is splendid really, but way, way too short.  Course the migraines were not on vacation.  With these flash by storms they have been making themsleves known suddenly.

Found an awesome break down of migraine aura symptoms

The aura is the complex of neurological or neuropsychological symptoms. It is the second stage of a migraine attack. However, not all migraine sufferers experience aura.

Aura can be broken down into 4 groups:

1 Sensory disturbances
2 Motor disturbances
3 Verbal disturbances
4 Visual disturbances

Migraine Talk

Check it out there are some crazy ones.  I get a lot of them myself, just did not know the name of it.  Here are some of the ones I get, although there are a few more as well

Sensory:

Depersonalisation This is a malfunction or anomaly of the individuals self-awareness. It is a feeling of watching oneself act, while having no control over a situation. Sufferers feel they have changed, and the world has become less real, vague, dreamlike, or lacking in significance. It can be a disturbing experience, since many feel that, indeed, they are living in a "dream".

DerealisationThis is where you feel separated from the outside world, such as a sensory fog, a pane of glass, or a veil. Individuals may complain that what they see lacks vividness and emotional coloring. Emotional response to visual recognition of loved ones may be significantly reduced. Feelings of déjà vu or jamais vu are common. Familiar places may look alien, bizarre, and surreal.

Auditory symptomsProblems with hearing - This can include tinnitus (buzzing sounds, ringing in ears) mild hearing loss, difficulty understand speech
Dreaming disturbanceUnusual powerful, vivid or weird dreams, nightmares, recurring dreams and other migraine aura symptoms experienced whilst dreaming.

Time perception disturbances "time flys abnormally fast" -- opposite of marijuana's affect on sense of time.

Dysphasic auraSpeech and/or language symptoms:

- Stuttering

- Involuntary vocalisations

- Paralysis of speech muscles

- Global aphasia - Language disorder involving severe impairments in both comprehension and production.

- Anomic aphasia - 'loss of a word' often the sufferer knowns the word and may even be able to see it - but can not actually say it.

- Reading disturbances

- Writing disturbances
Autokinesis Illusion of apparent movement of stationary objects

Cinematographic vision
Visual illusion whereby the normal perception of moving objects is replaced by seeing a series of "stills" as in a film run too slowly

Corona phenomenon
Light or colour round an object.

Diplopia
Commonly known as double vision, it is the perception of two images of a single object beginning seen at the same time.

Dysmetropsia
Visual illusions involving an alteration in the size or separation of visual objects.

- Macropsia - objects are perceived larger than normal, causing you to feel smaller.
- Micropsia - objects are perceived to be smaller than they actually are, causing you to feel larger.
- Pelopsia - objects appear nearer than they actually are.
- Teleopsia - objects appear much further away than they actually are.

What a hellish week

It was an unexpectedly hellish migraine week.  I am used to at least one hellish status migraine week every month, but this one was the wrong time for it.  Turns out it was the right time.  So the good thing about that is it is still just one week rather than this last one and another.  Unfortunately I did know it at the time, so I did not to start with treat it as aggressively as I should have.  So it is lingering on.  Hurt like hell today, but thats allright since is a weekend, still only one day to recover and kick the migraine tomorrow, otherwise when I go back to work it could be stretched on further.  I call these status migraine weeks killer migraines... because they are the ones after five days of hell you really want to kill yourself just to get them to stop already.

It is ironic on the work front.  I had my mid-year review and I am doing awesome in all areas.  Which makes my employer happy.  Me?  Sure I am glad I am doing my job well despite my disability.  But it is a disability with no manament acknowledging it is.  So I still can't miss any work unless I desperately have to.  This last week, damn I wish I could have called in sick one on of those wickedly painful days.  But can't.  As soon as I do, trust me I will not be doing awesome.  Sure my work with be the same, I will still do good on the same things, but if I miss 'too' many days then it will be back to 'nor performing at company standards' it is a 'fulltime face-to-face role' and blah blah.

A week like last we, which was torment for me, but good for my employer, makes me wonder how long this can last?  It always seems like for two years I try my damndest to get through the pain to function and then it just falls appart.

Stupid Status migraine

That migraine from Monday? Yep, still got it.  Course now it is not responding to any treatment so the bes I can do it wait it out.  Not much I can do during the work week.  Let's just say it is really straining my pain tolerance going to work with this beast.  I have used triptans for three days in a row, in hopes I could kick it, but it only dulled it for a bit, which helps get through part of the day at least.  That there is the max amount triptans can be used in a week, before they can potentially cause more problems than they solve.  In my case I am not so much worried about a rebound headache but rather the compounding side effect I get with triptans that gets worse the more I use them.  It seems to be an adverse affect on my breathing, perhaps because I have asthma, so it feels like there is pressure on my chest and I am not getting enough air.  Do that for a few days and then I also get a quirky heart beat and those sharp stabs of pain.  At one time my neuro had taken me off triptans altogether because he said taking case of the asthma, and breathing, were more important.  I am not sure I agree and thus my hesitancy to mention this side effect again.  First, triptans are that front line attack on migraines, in their entirety, not just the pain.  The can abort a migraine, not just dull it.  Secondly, as long as I am getting enough air to stand, I am not too concerned over the side effects really and I make sure to keep an eye on it so if it gets worse I switch to pain killers.  Today was that cut off, now that I am getting a cough and wheezing I know I crossed that line even if I had not hit the three times a week mark.  Thirdly, if I am to be considered capable of surviving work I need a triptan.  Simple as that.  He takes me off that or messes with my meds even a little and I am totally screwed.  Mostly because my work situation has not changed any, so any weakness on my part will result with the same ordeal with work.  I don't have any leeway for changes to my medication which is why I have not called my neuro back like I should have five months ago.  I mean, these guys all have different rules and I am the one that has to suffer through whatever complications they place on me.  Work wants me to be the usual healthy employee, who if I am suffering has the decency to do it quietly and not actually affect my attendence and performance.  My neuro wants to adjust my medication to get me out of chronic migraines, while making sure it does not adversely effect my other health conditions or emtional stability. 

Sucky thing is now that it is status migraine mode, stupid tenacious migraine, that means in all likelihood this beast will be present tomorrow and Friday.  Not likely little sleep and eight hours of work and light is going to improve the situation.  As long as I make it to the weekend intact I can see if I can sleep it off. I wish I had more options in treating these horrific migraines.  Like I wish I could call in sick from work without suffering the consequences, guilt and possible negative punishments, such as demotion or being fired.  I mean, would be nice to at least have the option.  Also would be nice if I had an action plan with my neuro and the ER.  As it is there is no point in going to the ER waiting three hours to get in for them to treat it like any other migraine.  Status migraines need a more careful assault.  I have read about such things from other bloggers, so I can wish.

Another sucky thing is this is not my usual peak migraine time of the month where I do tend to get into a status migraine.  Nope, this is an extra one free of charge.  Maybe weather related.  Definately not helped by my recent bout of insomnia.  Does not matter what cause it.  I just have to ride it out and then in about a week and a half go through the damn thing again, assuming I get a break.  I know when I am between preventatives, or not on medication at all, that is what happens... it is just one long migraine streak stretching into another.

So really a crappy week.  Today at work we got the results of the employee survay and some of the low scores likely are from me due to what happened last year with work... but I only ranked low the areas where they failed to follow company directives.  I think upper management at the time had an extremely narrow view of what a disbility is and is why they were such asshats.  I also ranked questions low on would I recomend my employer to other people... and that is a hell no.  I would to perfect strangers who are healthy, and have, but not to anyone who has any sort of chronic illness.  The reason i do not mention the name of the company I work for is because on this blong I mention all the really negative aspects of dealing with a disability at my particular location and that could be seen as publicly smearing the name of the company which employees can get in trouble about.  So if you have nothing nice to say... don't mention your employer by name.  Hard to recommend them to others when you cannot say who you work for, not that I would recommend them to people who have chronic pain.  I also said I would not recommend products and services to family and friends.  I used to prior to last year... I know the biz and if I am willing to help perfect strangers 100% with their finances then I am certainly willing to do so with family and friends.  I had to put the score low on that one because obviously family and friends know where I work, and obviously even if I tried to downplay some of the things that occured (cause I, as well as my employer, like to blame me for being sick too... gotta love guilt)... does not matter, because they saw the effects on me.  My ability to manage the pain was a constant struggle last year, and it got very bad.  It began to severely affect my insomnia and that made it even worse.  Throw in all that work crap, threats, failures to compramise.  Well, the end result of that ended me on a very sudden leave of absence which my family firmly blamed my employer for.  So there is no way they would deal with them, even if I did recommend something.  I agree with them there.  If someone I loved was treated by their employer like that, I would personally never deal with that company again.  Everything else I ranked well enough since I like my co-workers, think we work good together... and all that jazz.  They don't ask questions about diversity and disability... cause that would be a big 0.  Take me out of the senario and I think that branch works great, maybe some things need to be tweaked but I have no issue with them.  Hey, as long as I can hold onto my job without wanting to kill myself I'm happy.

Morning migraine competes with ouchy yoga

I woke up today at 5 am with a slicing migraine.  Bad enough to effectively ruin the rest of my sleep certainly.  Bad enough that it took some extreme motivational powers to get my butt to work.  Unfortunately I was out of triptans so when the pain began to peak all I had to take was my painkiller.  It dulled the ache a bit, which was good, but the rest of the migraine was very much there.  I had some extreme communication issues with one customer.  Kept using the wrong words and having a hard time completely a thought.  Then there was the substantial increase in typos and transposing numbers and letters.  By the end of the day the pain was getting to be severe but I just got off work and drove to the pharmacy to get yummy yummy triptans pain relief, which worked for the most part since the pain is down to a five now.

So, yeah, kinda sucked for a Monday since at the beginning of the work week I like to pretend the whole week won't suck and that is difficult to do on such a cruddy migraine day.

Also, since I did yoga on the weekend my muscles, mostly my legs, feet and shoulders aches like a sonofagun.  That has gotten worse as the day has gone on and now it is pretty hard to stand up and my feet ache so bad it is difficult to walk.  I guess when doctors encourage FMS patients to exercise, by that they mean stretches, walking and yoga, they fail to mention that while you might see some benefit to it (since having a sedentary life style is not good for anyone, nut just us cripples) you will also see a sharp increase in pain, in several different areas, as a result.  And that, since it is trigger by FMS neurological crap, does not improve as your muscles and flexibility improves.  For example, doing this off and on again yoga about 3-4 times a week at about 15 minute intervals I have noticed a decrease in tight achy pain and an increase in flexibility (I am hypermobile so I am super flexible, but not when my muscles feel so tight and tense, plus since my muscles are weak, flexibility really just means extra wobble).  I feel that is benefit enough even though there is seriously nothing relaxing about it.  But the pain from 15 minutes last days.  Lyrica helps me not to feel as much pain right away or for as long, so I am capable of doing yoga for the three days, of and on, while working.  Capable, but damned painful.  If the pain would decrease then I suppose that would make a fine long term goal.  But, nope.  Nasty pain flares up in different areas for different duration   I had that nasty arch pain FMS flare up for about a year and a half awhile back (some indeterminate time in the past, maybe 2 years ago?) and that pain is what is flaring up the most, which kind of sucks because there is not much I can do about that... except the same damn exercises that are causing it to flare in the first place.

My body has a fine sense of irony.

Spring fever

Spring time always catches me by surprise, even though the same thing happens every year.  My eczema gets irritable, my allergies kick in causing my asthma to get finiky, the changes in weather make my muscles just ache from the FMS and of course spring is nasty on the migraines.  It really is not any fun at all.  Surprising how much my muslces ache from the FMS though... the wrists, knees and feet in particular.

My migraines have been good off and on.  I mean this week was nasty with the pain and my triptan is causing breathing problems, so I have only been using them sporadically.  Yet there are some really good days.  Yesterday not being on of them and today as well.  The difference was yesterday started off with a mind blowing migraine such that I could not keep my meds in me for them to work and the pain just kept on going.  Whereas today woke up feeling great, the migraine did not hit till halfway through the day and even though it ended up at the same intensity as yesterday, it is not so bad because it is at its worst when I am home and can relax.

Reality Check

One of my blogger buddies No extended warrant set up this list as her health reality check and I think that is an awesome idea.

  1. Do you have a life threatening illness? No
  2. This year to last year, health improved, worsened, same? Worsened
  3. This year to last year, finances improved, worsened, same? Worsened
  4. Is your family life stable? Well Enough
  5. Is your work life stable? Definately not
  6. Are you not stressed, slightly stressed, really stressed? slightly stressed
  7. Are you feeling hopeless? No
  8. Are you tired? Very
  9. Have health problems affected your interaction with others? Yes
  10. Do you take yourself too seriously? no
  11. Do you have trouble concentrating? Always
  12. Do you feel sorry for yourself? sometimes I have a pity party, but not often
  13. Are you able to relax? Rarely
  14. Are you able to sleep? With Difficulty
  15. When you sleep is it quality sleep, leaving you rested? No
  16. Are there people worse off than you are? Sure they are out there. 
  17. Do you feel you are acting appropriately concerning your illness? Yes
  18. Do you still have a sense of humor? Usually, except on extreme pain days
  19. Despite your own issues do you have concern for other people's welfare? Yes
  20. Do you misuse or abuse medications given to you? No
  21.  Do you project your feelings about your illness into your interactions with others? I hope not
  22. Have you put life plans on hold due to illness? Yes
  23. Do you feel illness has cheated you out of a life you deserved? No
  24. Are you happy/content? Yes
  25. Do you miss the life you used to have? Yes
  26. Do you ever have a day where your illness disappears? Migraines, occasionally.  FMS never
  27. Does your illness make you fearful? Yes, I may lose my job or I may let the pain get the best of me and be desperate for it to stop
  28. Do you find joy in common everyday events? Yes
  29. Do you feel your life, in all aspects, is better, worse, or the same from last year? Worse

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