Fibromyalgia: Questing for Sleep

The depression and the pain

This image represents the sort of depression I get with intense chronic pain. But not all depression is like this. I get that I am depressed. Don't get me wrong, I admit to it. When I was younger I would not because of the massive stigma. Doctors are likely to then say your pain was all in your head if you admitted to depression. And my depression is distinctly linked to my chronic pain, as it has been noted by my psychologist. Lot of pain, intense depression, especially status migraines that are in fact associated with mood issues as is. Lower pain, mood stabilizes. But I comprehend even at the best of times I have aspects of depression. Go through more severe bouts of it even when the migraines get particularly problematic as they have been.

However, this is the status quo. I find it very hard to imagine it being Otherwise with this sort of chronic pain. With fibromyalgia, chronic migraines, nerve damage and hypermobility syndrome. Not to mention other health issues. I mean this compounds to a lot of crappiness. I am fully capable of good moods. Of happiness. Of joy. Just things are dulled. Sometimes numbed. Sometimes plummet. I don't understand how I am expected to enjoy this really. Am I supposed to be pleased about this? Supposed just tolerate this existence with a smile on my face? I have a smile... yeah, it hides a lot. It is designed to.

So I know that when I add stressful, painful factors like work into the equation it is a lot more difficult to manage my mood because a lot more pain and a lot less sleep. How is this unexpected? How is this not entirely predictable? Understandable? Frankly, it makes a lot of sense to me.

When I am not working I Do a lot of things to consciously manage my mood as part of my coping strategies and even then dips and valleys are part of the pain game.

Pain wears a person down. The lack of sleep does not help with mood. We have to really work at stabilizing our mood. But I just think depression is something I will always deal with to a degree because the pain is something I will always deal with to a degree.

Obviously I have to avoid medications with a side effect of depression since clearly that causes major problems. Major risk factor there I had not considered since my depression always seemed so 'normal'... this constant presence, aside from acute pain, that I didn't think it would be dramatically affected. But it is. Not stable under those situations.

I just can't be indifferent to this pain. There is this component of suffering you simply cannot escape. Suffering is not pleasurable. It is not enjoyable. It does not make you happy. It sucks the happiness from things. You try to distract yourself from the pain, from your thinking, from everything because just pausing makes you focus on this suffering and the pain. On the suckiness of it all.

I do know that serotonin is affected by chronic pain and insomnia. However, I do wonder if antidepressants are a true solution for a depression linked to a chronic pain situation... a situation that is, well, chronic.

Status migraining

There is nothing more brutal than a status migraine. The epic everlasting migraine from hell. The level 9 longer than 3 days migraine marathon. I am currently on day 5. Nothing works on these. Not triptans. Not painkillers. Nothing. Not sleep, because you can't Get any.

Yes, these migraines seriously affect my mood. I generally get severe bouts of depression with them. However, when I was off work they were far more rare, because I was able to get more sleep. When working obviously I do not choose when I get up and my brain chooses when I fall asleep... leading to far less sleep, leading to sometimes, just getting 'stuck' in a migraine.

So far since returning to work I have had two. And this last one caused me to be suicidal, so there is that. I mean, I cannot underestimate the level of pain especially when you are trying to function... and just can't, but are trying. Now before I went on long term leave... they were a monthly occurrence, so that was literally hell for me. I fear with 2 episodes in the last month and a half that the lack of sleep has caught up with me and work will now be an 'issue'. However, my doctor wants me on short term leave for depression in the short term. Operative word is short term. One hopes people understand that 'maintaining' is easier when we do not have to function in a large, massive capacity and can be flexible with our day and time.

Anyway, this pain is driving me nuts. I am now getting these dizzy spells too. Just erratic, swirling sudden spells all day long. And my heart is going wonky. Pain does things like this. Migraines do. Just having them too long can make a person very ill. At least this one I am avoiding the flu like symptoms. My anti-nausea med seems to be holding up and, thankfully, my painkiller is rather making my digestive system slow... rather than hyper speed symptom of IBS flaring which can be brutal with a status migraine (makes you ill and shaking, knocks the blood pressure down). So all good there at least.

But the pain is worn me down and I just need it to give me a break for a few hours or so. I have to go into work to pass my files on and that will take a lot of energy and will be stressful. I had hoped I would get some good sleep last night with my new medication but oddly enough seem to be immune to the side effect of drowsiness now. Maybe it will help tonight.

Someone with a status migraine Should go to the ER to get them treated. They are dangerous migraines. And not just because of mood issues and suicide risk. Because of stroke and heart attack risk. They are just dangerous states to be in. I don't because the ER here does not know how to treat them, but I know I ought to.

Suicide attempt 2

You wan to know what timing is? Writing an article about your last suicide attempt days before your next one. (Selfish) "There is a thought process that we go through during these times. My existence was torture and it seemed unreasonable that I should have to exist this way. Irrational that I would choose to exist in that pain and in fact choose to make it worse. Why would any sane person do that? And all avenues I had tried to reduce that pain had been used up. Society, my employer and my doctor at the time were all by their lack of caring and disinterest stating they wanted me to suffer. So this was my existence. Forever. And forever is a long time when you are in pain. A very long time. You see how endless and indefinite it is. If you just knew how long it was you had to go on. You begin to think how nice it would be to have a fatal stroke because... that would not be your fault. Then you imagine if you could kill yourself but make it look like an accident then no one would have to suffer with the knowledge that you had killed yourself. Clearly, I knew I was suicidal but these were Bad Days with Bad Thoughts. And my bad pain days were usually status migraine stretches, so I just had to wait them out... until I could get back to normal pain days. Normal hell. Then my work place would give me these ultimatums. If you do not work every day... we will do something unpleasant. And that would cause more pain, more stress, more suffering. Until that last ultimatum in that last status migraine..."

Last night I tried to kill myself. So add me into the statistic of repeat offenders. However a friend online picked up on the oddness of my posts and tried to get a hold of me and got more information, was more concerned and encouraged me to call 911, which I in fact did.

What is similar about attempts is that a) Status migraines of a Acute migraine lasting longer than 3 days. b) working full-time and having trouble with that. And C) sleep deprivations for the pain levels.

Last time I had been getting a lot of suicidal ideation. A lot of status migraines. Was actually in a state of frantic desperation. And had to work... or else.

This time, my manager is a great guy, so motivates me to work. Doesn't make me feel horrible when I can't. Makes me feel good when I do good. No ultimatums. I was getting some suicidal ideation but it was all passive.... all wish I could sleep and not wake up, wish I would have a heart attack and not have to deal with this.I just started work though since April, so only two status migraines so far. Anyway, what is truly different is what in the status migraine I had no intention of doing anything that night at ll. By mood was poor due to all the pain. I was exhausted from the lack of sleep. And i knew I would not get much sleep for the next day. Dreaded the next work day in fact with all the pain on so little sleep. ... and in a short span of time convinced myself spontaneously death was the answer. And clearly didn't ponder it long either. Just went right ahead.

And I was right after my first suicide attempt that once you cross the line from thought and action... it is easier to cross it again. I had worried about it. With reason as it turns out. Put me in the same situation; work full time, stress, status migraine, lack of sleep enough times.... get the same response, or the temptation, or the thought.

Which means, logically, I have to change one of those factors.

Apparently I love August though, because my first attempt was August 2010

It just hurts

"A white blank page and a swelling rage, rage
You did not think when you sent me to the brink, to the brink" ~Mumford & Sons. (I happen to be listening to them and that lyric caught my attention. Reminds me of losing control of pain and the disinterest of those that should be helping you through it).

Fact is I am not well tonight. I missed work today and I feel immensely guilty for this, as per usual. I know this cannot continue, but at the same time... the migraines are getting worse. I am not sure if they are getting worse because I am quitting smoking and that tends to make them worse... does every time with the quitting smoking products to the increase in stress. Or if it is just work and lack of sleep, which is pretty major all catching up with me. Lack of sleep being a big factor but it always is when I am working. Work itself in pain is difficult and stressful.

And I am tired. And it just hurts. And I wonder why do I have to put myself through all this? Over and over again. Clearly, I can't do it. Clearly doing it makes me very emotionally overwrought. It is mentally and emotionally exhausting. Fatiguing.

They ask so much from us, don't they? Doctors. Neuros. Pain clinics. Society. Want us to dance like puppets with painted smiles. To do what everyone else days, better even, but with a boatload of pain, fatigue, concentration problems and other problematic symptoms.

But I gave you all 
I gave you all
 I gave you all 

 Close my eyes for a while 
And force from the world a patient smile 

 But I gave you all 
I gave you all 
I gave you all 

 And you rip it from my hands 
And you swear it's all gone 
And you rip out all I had 
Just to say that you've won
 And you rip it from my hands
And you swear it's all gone 
And you rip out all I had 
Just to say that you've won, you've won 
Well, now you've won 

 But I gave you all 
I gave you all 
I gave you all

Mumford & Sons

Damned Insomnia

Overview of Fibromyalgia and sleep dysfunction

Sleep dysfunction is a component to fybromyalgia specifically, but the fact is insomnia is a factor with all chronic pain. I know when I developed chronic migraines my insomnia got that much worse and that much more complicated. The migraines acute at night, making it difficult, or impossible to sleep... the lack of sleep a migraine trigger for the next day. Seems like an impossible cycle of pain and insomnia feeding into each other.

I know that I have had insomnia most of my life. I know that I have tried pretty much every single thing anyone has ever mentioned to me to help with it. Every herbal supplement. I was on some medications with a side-effect of drowsiness said to help some people that I found useless. And now on some sleeping pills that I seriously do not find all that strong to be honest and only mildly beneficial. I also take melatonin because apparently I have none of my own I have done hypnosis, which, apparently, does not work on me. I do deep breathing exercises. I do meditation. I might be missing some things here and I am not even bothering to list All the supplements... but lets just say I have done A lot since I have begun trying to treat my insomnia at around the early twenties. Insomnia bothered me as a child and in my teens. I was always tired. I skipped school, a lot, to sleep. But as pain increased, so did insomnia... and it became a Problem. A sleep deprivation problem. A 'I cannot sleep at all' problem. And I began to ask doctors about it to which they often said 'we do not treat chronic insomnia with medication'. Up until one doctor realized my migraines were being made significantly worse by sleep deprivation symptoms. Thus the sleeping pill, which did in fact reduce those sleep deprivation symptoms... therefore there is some sleep going on in there somewhere. I mean, rather than days of none at all.

So it is an issue. A very complicated issue I have yet to find a viable solution to. The pain clinic class I went to said my sleep issues were more complicated than the usual complicated. My pain doc said if I wanted to explore more intense sleeping medications I would have to see a psychiatrist as they know those sorts of drugs... but some are known to alter the personality and that does not sound good at all. Freaky really to contemplate being all drugged up because you simply cannot get a good nights sleep.

And yet, the thing is I imagine the pain would be less intense if I could just sleep. I imagine I could think better. I imagine my mood would be better. I imagine the fatigue would be less. I imagine... I have no clue really, but I imagine.

That facade

There is an aspect of fake it till you make it about the chronic pain facade. That is that we fake dealing with it until we do deal with it. That is to say, we may not always believe we can deal with the pain and work for example. But we are damned good at this facade business. We have this stoic facade of well-being Down. So we plant that on our faces, throw in some humor, and just Pretend we are all good... until we are all good. Somehow along the way convincing ourselves that in fact, yes, we can do this.

But that isn't always true, because sometimes we just fake it and the pain gets the best of us because the pain exceeds our coping. Sometimes we have to fake it because the situation dictates we not scream or act in any way in distress... like work. And so we do, but the fact remains, due to lack of treatment, we really are not handling the pain well at all. And no one can tell because, damn, we can fake it That well.

So the facade benefits us, and hinders us. It is a social construct after all. We use it, because we feel that we must. And if, if, we are coping decently it is not, necessarily, a bad thing assuming we are able to communicate with the people in our lives that need to know about our pain. Which is not always the case. Or has not been in my experience. I am stoic, even when I should not be. Even when talking to my doctor. It can be difficult to drop after decades of automatically having it in place. It is however, a bad thing if we are not coping well and are, also, not communicating this.

The victory

Sometimes we crave the victory. We talk about how it would be easier if we had a curable disease, even if it were horrific... because there is this foreseeable end date to the battle. We could conquer and move on.

Instead we just have the battle. We have good days. We have bad days. We cope well. We cope poorly. And it never ends. That can be a realization in-itself is hard to handle. However, eventually we come to terms with this. In some sense everyone has battles to fight. Life is struggle in some way or another. If it were not this, it would be something would it not?

Does it mean the battle has to define us? Not particularly but it does shape us in many ways. And although there is no 'Victory' with a capital V there is small successes. There are small accomplishments and victories that get us through things. I think it is important to focus on each and every small accomplishment like it is a damned big deal because in the end they are a big deal. We need to focus on what gets us through the day, the week and the year.

We know intrinsically what helps us win our battle. We are battle scarred warriors. We have learned from experience. Learning to cope is something we all have to adapt to. Personally I learned the hard way. What Not to do. And then do it again just to make sure (Yep Not That).

Our story will never be like a novel with a beginning, middle and end. We will never have the satisfaction of beating this beast of a disease (whichever disease it is you happen to be battling). We have to be content with a story that celebrates our small victories and achieving our small goals and when we cope very well. The low pain days. The days we accomplish more than usual. Or when we successfully get through the swell of that storm successfully. Fight that battle as best we could and got through the other side.

Not a fairytale story. Not an epic story. But it is one we share with so many other people. We are not alone in this battle.

The one #Hope

Hope can get us through some pretty dark times. But I remember when I was working, in excessive amounts of pain and i thought if I could just get to my neuro... he would do something. He would help me. He would help with something to bring the pain into manageable levels. So I pushed through the pain day by day to get to the appointment.

I get there and.... he had run out of ideas. Nothing more he could do. He referred me on to a pain clinic with a Long waiting list. I was devastated. All that pushing though the pain and long wait just to get to him and nothing. I felt so utterly hopeless when i left. I was in tears in the car.

Because I had that One hope I was aiming for and nothing else kept me going, so it crushed me when it was gone.

We have to find things that we can hope for, live for, yearn for and desire for our future so that setbacks are not brutal painful events in our lives.

#Poem: Ride the Night

In seeps the night
In creeps the darkness
Where I triumph in day,
It cannot stay, not today

In seeps the night
In creeps the sorrow
Here comes the gloom
Trumpeting its doom

In seeps the night
In creeps the pain
Whispers spiral in the head
Cannot be unsaid.

-Nikki Albert

empathy, sympathy and pity

I Don't Want Others To Pity Me

I read this blog post and it got me thinking. However it does occur to me there is a large difference between sympathy, empathy and pity.

Ironically although I raise awareness and I want people to understand my journey, in real life, I shy away from true empathy. That is a true emotional connection where someone actually understands your suffering. And I tend to becomes uncomfortable in those situations. For good reason. If they truly understand my suffering... then they understand how very fragile my coping is. How very difficult it is to manage this pain. How much I struggle. When really around people I care about I am all about appearing in control. Pretending I am not in as much pain as I am. On the surface at least. I may be honest about a situation if you ask me... but I will not be Emotional about it. So you may know about a situation I am in but never know my emotional involvement. That is just my nature. In a way, I am far more exposed on this blog, because I allow myself to be. I want myself to be.

I have come across Sympathy far more often. These are people I know generally or work with who do not understand pain very well but want to make some general remark to try and relate to my pain (yeah i sometimes hurt when it rains) or try and tell me how much my life must suck (I can't even imagine how it must be to be in pain All the time) or try to show some sort of sympathy for my general struggle which they do not even comprehend (I do not even understand how you live with the pain every day). Cause you do, I say. You just Do, when you have to. But sympathy doesn't bother me at all. Some people, yes, are very awkward at it because they don't know what to say or how to say it. But that is fine, they want to try. The fact it they are trying to relate to an experience they have never felt before, which happens to us All. And trying is what counts. So showing sympathy is never a bad thing.

The few times I have encountered pity on the other hand I had sort of different responses depending on the situation. When i was younger and I encountered it I used to just get angry. I would say I may not be able to do 'such and such' but I still am capable of being what I want to be. I can still do things when I moderate my activities. I just have to live in my limits. This is manageable not crippling. Later on in life pity feels like it wants to make me feel bad about myself. Like oh poor you you can't do anything you poor disabled girl! I mourn for all you could be but can't. No one has the right to pity this hard earned existence I live. It is a damned victory.

-Or maybe I just want it both ways. I want people to know what my life is like so they can understand the abnormal things I do. And I want them to see me as normal because I don't want our time together to be burdened with my crap. Perhaps this makes the most sense.I Don't Want Others To Pity Me

The fact is we do want people to understand us. It is human nature that we want to be understood. Pain makes us isolated unless we share it. But at the same time we want to be able to go out into the world occasionally, socialize occasionally and be a normal personal... without our illness being a 'thing'. So we do want both.

It is in fact possible. You just have to understand not everyone you meet needs the same level of knowledge and understanding about your health. Family: they are in for it all because they are closest to you. Freinds: give them the basics, the vague details and leave it at that... these are people you hang with to feel like a normal human being. Work peeps: be as vague as possible.

#Surviving #Pain in a #Day or more

I sometimes refer to Chronic Pain as a life by inches. Often we do not focus on the future. We focus on This Moment, then This Moment and then This Moment. A life by inches.

Sometimes when I am at work and I am in acute pain I exist in pain. My brain is filled to the brim with pain. So I need to focus very hard on anything else. I focus directly what is before me. I am careful. I am meticulous. I check my work. I am slow. I just methodically plod along taking one task at a time. Not thinking about the next task or the previous one. Not thinking about how much of the day I must get through... because it is too long, too much... I just need to focus on the now. I can handle the now of the pain. Not 8 hours of it.

And fine, I get through the day.

But damned if you can exist your whole life like this. A life of inches. Survival mode. Just get through this moment and I'll be fine. And then this moment. With no past, no future, no goals, no ambitions. Just surviving the Now of existence.

It is fine to get through a day like that when it is necessary and it is indeed necessary once you get above an 8 in pain. But once we exist in survival mode it is a horrible place to exist in. It means we have no effective pain management and something needs to be done about it. It means we are way past the point of a warning that things are not well with your pain management... this is not working. And no one can exist in survival mode for long. We are at high risk for depression when our existence is like that. Our pain often will exceed our coping strategies. It should be the alarm within us that tells us we need help. We need a doctor to help us with our pain management and if our doctor will not, then a referral to a pain clinic or neuro who will and if they are not, then a new one.

Sink or swim

I don't mean this to sound hopeless but in a way it is because no matter how much you try, or even what you try, there will be pain. So in that sense it is all about treading water, which as we all know is damned draining. And yes, we all put the effort in to make changes... we swim in a direction and we hope for all it is worth we will hit land... land is like this fiction though. This place that exists with no pain. Or less pain. Never seen it. But heard about it. So we aim for it, just never get there. And then sometimes... just can't swim. Just have to try and not drown.

And right now? Just trying not to drown. Working is exhausting. It takes a lot of pain tolerance to get through work. And no matter all the things I know I could do to cope better, too damn tired for anything but to get through the day. But I am still treading water. Not drowning. And that is something.

Thinking about #Depression

This is the same for depression as it is for chronic pain. We can survive anything... if we had an end date. Severe pain that we Know is temporary? We can handle that. With no end date? That is difficult to come to terms with and cope with. Endlessly cope with I should say. And some days we do not cope well. Some days we do.

The thing about chronic pain though is that There Is No End Date. It is fact. And that fact can enhance our depression if we suffer from it. I have depression associated with chronic pain. So the pain is high and I am depressed... and the fact the pain is endless is a point that occurs to me often in that state of mind.

Because depression in-itself without chronic pain is insidious, and compounding, and it shrouds the future in its own view of reality... so you cannot see an end to it. You see your suffering lasting forever because that is the twisted logic depression gets you into. You are locked in this fog without an escape.

Add them together and you get a very firm fact, your physical pain as not end date, and turn that into.... your suffering will never end. Depression is never 'There will be good days. There will be bad days. But you will cope like you have every other day.' No, depression is 'you entire future is consumed by suffering and pain, like your entire past was consumed. What kind of life is that?' There is a logic to depression, but it is a special sort of logic that exists without a shred of hope for the future. It leaves no room for potential. And change. It assumes the future will be like the past... but the fallacy in this is that it assumes it will be like the worst of the past, and ignores that a) you had low pain days b) that you coped up to that point c) that you survived all the hard times in your past and d) every damn good thing in there... and just focuses on the eternal pain stretched before you. That is why it is insidious... it twists things and tricks you into looking at things in a specific and narrow way.

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...