Wednesday, May 27, 2015

#Poem: Brain Haze

Brain Haze

Lost my mind today
Pain distorting reality
Brain beginning to fray
There goes my functionality

Pain distorting reality
How to comprehend?
There goes my functionality
Brain haze descending

How to comprehend?
Brain beginning to fray
Brain haze descending
Lost my mind today

This is a poem I wrote about brain fog which is an issue for fibromylagia, migraines and chronic pain. In fact it seems to be one of those symptoms that comes along with a lot of chronic illness. I suspect due to sleep issues and fatigue. Some of the things we can do about it in fact are to get good quality, regular sleep... easier said than done. Keeping regular routines because habits help us remember things. Staying organized and in that line of thinking using methods that assist us with organization such as writing things on a calender, using apps on a phone and whatever else assists us. Also eating regular meals can also help with mental fatigue.

It is not always easy to manage though. Just seems like thoughts and words slip through the cracks. Everything becomes all muddled and it is like thinking through mud. I find myself often using the wrong words and sentences come out all wrong. I have a difficult time expressing myself. It is extremely frustrating to me. It would be a great deal easier if I could just express myself using the written word all the time since I have an easier time of it but even there the world is full of typos.

Monday, May 25, 2015

Meniere's Disease

I have been given two new medications to help treat my vertigo issues. Zofran for the nausea and SERC for the vertigo itself.

SERC is actually used to treat Meniere's Disease but sometimes its symptoms and migraine associated vertigo (vestibular migraines) are extremely similar. As they are in my case. My doctor asked me if I get vertigo, nausea, tintinus and hearing loss and I do. But I also get the sort of vertigo associated with meniere's.

"A typical attack of Meniere's disease is preceded by fullness in one ear. Hearing fluctuation or changes in tinnitus may also precede an attack. A Meniere's episode generally involves severe vertigo (spinning), imbalance, nausea and vomiting. The average attack lasts two to four hours. Following a severe attack, most people find that they are exhausted and must sleep for several hours. There is a large amount of variability in the duration of symptoms. Some people experience brief "shocks", and others have constant unsteadiness. An unusual variant is the "invisible hand", where individuals feel as if they are being pushed over. High sensitivity to visual stimuli (visual dependence) is common. (Lacour, 1997). During the attack the eyes jump (this is called "nystagmus").A particularly disabling symptom is a sudden fall. These typically occur without warning. These falls are called "otolithic crisis of Tumarkin", from the original description of Tumarkin (1936). They are attributed to sudden mechanical deformation of the otolith organs (utricle and saccule), causing a sudden activation of vestibular reflexes. Patients suddenly feel that they are tilted or falling (although they may be straight), and bring about much of the rapid repositioning themselves. This is a very disabling symptom as it occurs without warning and can result in severe injury. Often destructive treatment (e.g. labyrinthectomy or vestibular nerve section) is the only way to manage this problem. Other otologic conditions also occasionally are associated with Tumarkin type falls (Black et al, 1982; Ishiyama et al, 2003). See here for more information about drop attacks."
In particular my severe bouts do not tend to last long, but after I get a severe bout I have long lasting mild to moderate vertigo. The mild to moderate vertigo can last days to months. But the severe bouts tend to last hours or at most a day. Which is good because you can't do anything during it. And I also am very prone to sudden drop attacks. In fact, they are so common I consider them to be a primary feature to my vertigo... this sudden severe spontaneous drop followed by prolonged instability.  S severe bout of vertigo always comes with an increase in tinnitus in one ear and sometimes with a muffled hearing in that same ear. Lately due to having to commute to work (motion being one of my sure-fire triggers) I have had a constant instability with brief bursts of moderate vertigo shocks and then sudden bouts of either drop attacks or severe vertigo. It has not been pleasant. Thus the medication change. My doctor suggested I may try not commuting, as in relocating to a workplace branch in my city, rather than the nearby city thirty minutes from home, but I will have to see if such a change is remotely conceivable within the organization. They tend not to consider my health issues to be disabling to be honest. She did write me a doctors note, but this is not like a sick note for a sick day... this is a 'hey would you consider moving her to an entirely different location because I recommend it?' I doubt they will go for it, considering my past history of requests and their responses. But I can ask. I mean two new medications to 'hopefully' manage this vertigo enough that I can walk and eat... or just not commute and my existing medication will be sufficient. Seems like such a simple solution. But nothing is ever, ever simple with a chronic illness.

I have to say the nausea with this vertigo is tremendously bad. I have had a great deal of trouble eating the last couple of weeks. Which as you can image is awesome for weight loss but not so awesome for feeling remotely well. Sort of feel like I constantly have the stomach flu that will just not give up.

#Playing and #paying

In many ways reality and I are not well suited for each other. This reality is too loud, too bright, too full of odors... and my brain loathes it in its entirety. It grates on my oversensitive nerves and spikes up migraine after migraine after migraine.

And you think maybe if you just avoided stress. Took it a little easier. But this world does not allow that. You must be absorb into its fast paced society or you are a liability. But I cannot keep up and I just get worse and sicker.

It makes me crave silence and solitude. Something to sooth my cracked soul. I need a deprivation chamber to soak myself into every day just to give my brain a rest.

It is such a contradiction. I want to go a play with the other children, but I cannot handle their games. I need to retreat and hide to feel better. If you play, you pay and pay and pay.

Thursday, May 21, 2015

Had a #Sick day

I have had a rough few days off. I have been just right sick. Nauseated. Vertigo. Have not really been able to eat and somehow managed to lose five pounds in the process, but since I have been rather ill I suppose that is not that surprising.

I missed work today and that makes me uncomfortable. Not because I was ill, but because it was the first time I missed work since I have returned. The first time I have missed work with this current manager. Makes me anxious. And I feel guilty about even though I was so ill. Even though I would have had some serious issues working like that... unless there was a bathroom two feet from my office. Hell if I could have just lived in the bathroom all day. Because that is what I did.

I suppose now that it is late and I am now in so much pain due to being so ill all day, I am now upset over it more. It is just a sign of unpleasantness. A sign of non-functioning. A sign of being unable to physically cope with the stresses of work and how they affect my body. The lack of control I have over that if it is in fact the case.

You know just feels like the pain is just waiting to steal my tomorrows. Just a whisper away. I know what it is like to hold onto work long past when i should. It is never pleasant. It is an ordeal no one should have to ever endure. But we do, because we must... for many reasons often but mostly just because we have to live and earn money and it is necessary.

So I feel drained, sick and in pain and finally my mood has tanked with it. Wondering how this is going to even be possible again. How can I maintain?

Monday, May 18, 2015


I know with chronic pain we are expected to be functional with pain. I remember in the pain 101 class he had talked about how we should not stop living our lives. To a point that is true. We should not stop socializing. Being with people. Doing things we enjoy. Being in the world.

But to a point. To a point.

Beyond that point there is something horrifying in that word functional. It says I have to repress all this pain, smile and try to just push through it while trying to work. It is a cruelty. It is a torment. For all the good things there are about work. For all the enjoyment I take from from doing it, I cannot seem to get past the cruelty of having to try and function under the increased intensity of pain.

I think the primary reason is is that because it exceeds my pain tolerance. So I lose my capacity to live other aspects of my life. To socialize. Being with people. Doing things I enjoyed. Being in the world. It all shrinks to getting through the pain. That seems wrong to me. So very wrong.

I think that means I am not functional at all. Generally when I go on like this I prove it too. Because you can't go on exceeding your pain limits for long. It gets to you. You crash and burn.

Sunday, May 17, 2015

#Painful #consciousness

I know there is no coming to consciousness without pain. We all have pain in our lives. But I would say for me there is no consciousness without pain. I am conscious. And therefore I am in pain.

I have not blogged for a few days and that is in fact because I am in a crapton of pain. This whole working thing is just... significant. It is not just that it is triggering my vertigo, which it sure the hell is. It is amplifying and extending every migraine. This current one is two days in a row of upper level 8 to 9 level pain. I have been physically ill with it. Unable to really even eat. I thought I was getting sick, but, no, just a horrific migraine. There is not an inch of space from the neck up that does not hurt like hell at this point. I have tried my triptan. Failed. Painkillers... not remotely strong enough. So I suffer.

A abhor people who diminish the significance of this pain. Like the insurance company that cleared me for work when I had not improved at all. Those sorts of people. It is just headaches, right? So many people do not comprehend the extent migraines can get to when they are chronic. That they are an attack. An neurological event. That they can last from 4 hours to 3 DAYS. Unless they go status, in which case, even longer.

I used some banked time to leave early today, because yesterday I felt so violently ill I thought I must be getting sick. So I thought I would use the banked hours to leave early the next day since no one likes to work sick. I am glad I asked to use them. I needed it. The pain was ripping a hole through my brain at that point. No one liked to work in that sort of pain. And this is what is expected of me. I am not sure what is to be done about it. I will have to think about it seriously. Very seriously. If things get worse, as they tend to do, I will end up in a place that is very familiar to me. A hell I do not ever want to experience again. I just cannot go through all that again.

It was not a mistake to try and go back. I had to find some sort of job might as well go back to what I was doing and then assess what I needed to do. The mistake was on the insurance company stating that I was 'significantly improved' in the first place. They are the ones that were wrong here. But that is because they don't want to pay. So they will get out of paying. And it wasn't a mistake to try again. We can make changes and hope that our coping is strong enough to handle the significant change of going back to work. But in such pain today and yesterday, working, and I just didn't want to be there suffering like that, muddling though things and trying to think straight. If it was lower pain, fine, I can work through it. But when it gets up there, I am really not very functional. I can't even say people's names right.

I have some days off so hopefully the pain will subside to its normal migraine strength and give me a bit of a break. Before going back to work and having it rise back up again.

Tuesday, May 12, 2015

#‎May12BlogBomb #Fibromyalgia Awareness Day post

I have had Fibromyalgia, officially, since I was in my early 20's and I just turned 38.

Our Theme for the BlogBomb this year is: "A Vision for the Future!" Perhaps the angle of how your future would look if you were free of illness from tomorrow 

If I were free from illness tomorrow: I would continue to work, but I would work pain free without the additional concentration problems. I would then begin to let my ambitions have a role in my life again. I would plot where I wanted to be in five years. Where my career could take me. I even know what that goal would be. Then I would begin to take classes I know would help me achieve this goal in five years, or less. I would also begin to save money for a awesome vacation. One I could never do before. With a lot of sunlight. Lots of activity. Maybe going to Mexico to look at the Mayan temples. On my days off from work I would make time to socialize with friends, go out and do things and Still get my housekeeping done.

A vision of the future as is: my vision of the future as is is a little different. I want to try and maintain at work and I hope that I can. I strive to do so. That is my only ambition to maintain at my job. Get to work, do my job, get home and relax. Just that. I foresee being able to do this a year before it becomes problematic due to a medication wearing off or the pain getting out of control or the vertigo going nuts again. Then I will struggle. From there it is hard to predict what will happen but maybe another leave of absence, of which I have had many and just came back from a long term leave. Maybe it will lead to another demotion and then wait for a bit until a promotion... I did this whole demotion after a leave and then promotion after a certain term game a couple of time. With a chronic illness it is not uncommon for us to not make as much due to leaves, lack of raises and promotions. And I will struggle like this until retirement or until I succeed in getting permanent disability. I do take small short vacations to places close by where I can relax, like into the mountains. We stay in a cabin because I cannot handle tenting as it is too painful to sleep in one. Or to my uncles cabin. I socialize occasionally with a close group of friends who understand my limitations and we play cards, something that is in my capacity to handle. Other than that I am a hermit.

Monday, May 11, 2015

Out of the depths

People who overcame things in their lives have a depth to them over people who have never struggled at all, or very little.

But for some of us I wonder do we ever find our way 'out of those depths'? When our pain is consistent suffering? Consistent struggle?

I have in the past described chronic pain, chronic migraines in particular like being in an ocean far from land. Almost drowning at every moment as the waves surge against you. You just struggle not to drown. Sometimes you may want to give up and just drown. But you keep struggling to stay above water.  Sometimes you swim because you are sure there must be a shore out there somewhere, but you never find it. But you hope. But mostly you try to keep your head above water; neither drowning nor saved but in some sort of limbo hell. We are immersed in the depths so far there is no other side to see.

I am sure if there was an end to this tunnel, coming out the other side we would have one hell of a story to tell. But we are held in limbo by the pain. Suspended by it. Neither defeat, nor victory. But, yes, we know struggle and suffering. To an unnatural degree that is not counterbalanced as it should be by ease and joys.