Saturday, November 22, 2014
Smiles and laughter can hide sadness, suffering and pain immensely well. It always amazed me at how well.
First, take chronic pain for example. With chronic pain you have to function in daily life with pain. So you do. This means tolerating and enduring a certain amount of pain all the time. And you can smile and laugh while in pain. Yet, people never could seem to fathom this. That it was possible to smile and laugh and be in pain at the same time. It has to do with pain behaviors and how those are not pain behaviors. How people with chronic pain have long since learned to mask their pain behaviors. Long since learned to mask their pain. Long since learned to endure and tolerate a certain amount of pain. Not to say, that some levels we cannot simply endure and tolerate, but we have our levels we can mask quite well. This issue with typical pain behaviors lacking and normal behaviors such as laughter and smiles being there instead seems impossible. But it is indeed possible. Makes the pain less readily seen and understood. Makes it diminished in the eyes of others.
Pain leads to suffering. All pain comes with a level of suffering because pain brings with it a level of emotional reaction. We mask the suffering behind smiles for many reasons. Most often because we do not want loved ones to see the depth of our suffering. We do not want anyone to see the depth of our suffering. We feel like we might drown in the depth of our suffering. Words cannot even breach it if we tried to.
Depression can add another layer to this. Or it can in fact be its own layer. I have in my time suffered from depression. It is very isolating. It consumes your perception of reality and doesn't ever give you a break. It shadows your every thought. You can mask it with smiles and laughter, that feel fake and hallow to you, but no one ever notices they are different. Empty. The difference is that depression is not sadness. It is something that swallows sadness. It is the numbness that follows all emotion.
Yes, it amazes me what we hide behind our smiles, so well. Our facades. In a way making ourselves more invisible with our invisible disabilities. But words can fail us sometimes. Words seem insufficient at times.
I often find writing to be a way to express myself the truest of all forms. Sometimes in poetry. Sometimes on this blog. I think it is productive to find methods to communicate our emotions and suffering in different ways. At least to get it out. Once you get it out... you find a bit of peace inside. You can't contain everything behind a smile. A mask.
Friday, November 21, 2014
Functional. I wrote this about the word because I do loathe it. When I used to work if I was in a lot of pain, but I was There, and I hid the pain and I did my job... I was Functional. It didn't matter in the least bit to anyone how much I suffered, just that I was there. Just that I did my job.
It is the expectation that I would mask the pain, because you simply cannot show the pain or talk about it in front of customers ... that would be inappropriate. It was expected that I would come to work, because how bad could it be? Didn't I work with them all the time? The guilt they put on me when I called in sick, well, that was its own hell.
So what that I suffered underneath? So what that I could barely concentrate due to all that pain? Could not think straight. So remember customers names or faces. Or speak properly with all my words just getting stuck up there in my brain. And typos... all the damn typos. And the noise. And lights. And smells. Made my eyes feel like they were being stabbed. And nausea rolled in my stomach. But I could not eat all day anyway, or I'd be in the bathroom every ten minutes... another fun migraine symptom people rarely talk about. If your not throwing up, then it'll come out the other end. Nothing stays in you for long. So no food. That is a migraine trigger too, but you can't work in the bathroom all day.
My worst fear being off work has always been that I will improve slightly. Not a lot. Not dramatically. Just slightly. Just enough to go back to work and suffer 95% of the time, rather than 100% of the time. That is my worst nightmare. I know that highly episodic migraines pay the same price as chronic, and chronic at 15 a month, is the same as daily chronic.... but doctors don't. Hell, they don't even understand the price we pay as it Is. So if I have a couple migraine free days that will be a Success to them. And I will love it to, but functionally it is No Different. Functionally I will suffer the same. Functionally I will be pretending to function while suffering all day long, just so I can get home to suffer in peace. Yet, I know that is the goal. The end game. You see, you get offered a lot of help when you are not working. When you are working they don't care that you suffer. When you are not working, they care that you are not working. They want to get you working. So they want to figure out how to manage your suffering enough to get you working again. Even though it will not be much. Even though working itself will likely ruin it all because of the trigger infused enviroment. Evan so, they All want to help you because society thinks that is such a shame. Then when you are working again... they will not care about your suffering. Because you will be Functionally suffering.
Tuesday, November 18, 2014
“The tragedy of life is not death but what we let die inside of us while we live.” ~Norman Cousins
The tragedy of chronic pain is poor chronic pain management which leads to poor quality of life. We let a lot die inside of us while trying to survive the pain, because we need to survive the pain. We slice and dice our lives, cutting out so many things just to have the energy to endure that pain. All those many things we cut out are the very things, if we were getting chronic pain management, they tell you to do to help with your mood. Get out of the house, take a walk, socialize with people, with friends, do things for yourself, find a hobby of something you have never done before to take up some of your day learning something new. So many things they suggest we try to help with mood and isolation and depression... that we had cut out because of the intensity of pain, the lack of ability to cope, the need to just survive through it and the completely lack of chronic pain management.
Lack of pain management stems from lack of understanding from doctors. Because of lack of training they received to begin with. Yet you have to wonder can they not comprehend what a pain problem is? And that treatment of it is complex? Perhaps beyond what they can do and needs the attention of someone who specializes in pain? Rather than, expecting ones patient to simply endure the pain, endure it while working full time... because that makes some sort of sense to them? Do they comprehend pain at all I wonder.
Eventually it comes down to this. Always to this. It is us that is causing this pain. Our lifestyle. We are overweight. Or we smoke. Or a diet is wrong. We change something. Then it is something else. Because they do not want to admit they do not know what to do and they ran out of ideas.
And in the end what we want and deserve is chronic pain management. A better quality of life. To not just be in survival mode. To add those bits and pieces of our life back in there, if we can. We want a little more life and a little less suffering and that really should not be too much to ask for.
It is just the beginning of winter and I ache so much it is hard to exercise. I am finding it quite difficult indeed. It now makes complete sense that the pain clinic fellow told me many people have trouble over the winter so that I should try to just 'maintain' and then come spring increase again. I am having a hell of a time 'maintaining'... and in fact am decreasing my time.
I also don't think my brain is quite understanding when to sleep with the darkness falling so early. I sleep ten hours on night and three the next and that seems to be my 'pattern'. Ten hours is not too bad since I feel good after that, even though I feel it is a waste of the day. But when I only sleep two to three hours and cannot sleep any more... that is nuts. That is just insane. I need at least four hours to function. Less than that is a killer migraine recipe. Try as I might though I just cannot sleep. I just lay there and twist and turn. I think it is partly pain related. And simply not much I can do about it. So I get up and read for a few hours and try taking a nap in there somewhere to compensate.
Monday, November 17, 2014
I wrote this about secret desires. About wishing I could just walk in the sunlight and live those lives unlived. Rather than the darkness, the pain and isolation.
I sort of do yearn for the sunlight. Because photophobia has haunted me a very long time. Before even my first migraine. I had a moderate case of photophobia with fibromyalgia you see. So it has been there since I was a teen. When the first migraine came along is when it became this intense creature that ruled my dark and sun. I love my house dark. Black out curtains, closed blinds and curtains. A few rooms of light for my spouse to enjoy.
The photophobia has made it unpleasant to leave the house during peak sun hours. Even with sunglasses. Without sunglasses I will get a migraine in about 15 minutes from the sun. With sunglasses about 45 minutes... as I found out when we were painting the fence. It is simply Too bright to handle. The migraine is swift and acute and always needs a triptan, which I can only use rarely.
So, yes, it would be nice if that was not so intense. If it were just gone.
But it more about wishing we could have more than this life. More than we have. More than our limitations. And maybe we will one day. If we can live within those limitations and have the life we desire... that is the key.
Who doesn't yearn for more.
Wednesday, November 12, 2014
Here is a repost of a essay I have written. I was in a 'mood' that day, but keep in mind I was also working full time with a substantial amount of pain... that will put anyone in a mood. And not like I'm lying here either. Just has some snark to it.
When you are chronically ill we face the ghosts of our better selves all the time. Even though I have had invisible illnesses all my life, they have not had the same impact as the ones now. The impact increased with time. So I face those better selves with my former productivity and social life.
It does take a huge effort to free ourselves from that because we have to understand that person is a memory and not a reality. That person will never exist. We have to move forward to a better reality of ourselves. That is what we want to aim for. To better ourselves, our real, actual selves. And by doing so we can Never compare ourselves to our past selves in better health, only to our current self. If I make a minor improvement over my self of last week that is a cause for celebration. I have improved over me real self and not compared myself to some image that doesn't exist anymore.
What I also find difficult is that we often have no idea what we are moving Towards. What will be the outcome? It will not be no pain. No illness. Will it be work? Possibly it might. In my case possibly it might be part time work in the future. And this makes me sad, not happy. I lost all my potentiality and I have become this person only capable of holding down part time work which will hardly be satisfying to me in the least or pay any real bills. That is my best case scenario after all my hard work. What I am aiming for. I hope that in the end I am aiming for a more fulfilling life, with other aspects like a social life in there, and less suffering. I hope. I just have to accept I can have no career goals and ambitions now. Therefore not only do I have to free myself from my memories but I have to free myself from the image I have of myself in the future.
Tuesday, November 11, 2014
I have been thinking about making some simple videos on YouTube. I even have a small project I might engage in to promote invisible disability awareness. However, for now I was just checking out the YouTube system and so compiled some of my Brainless Blogger quotes I have collected and posted on my Facebook Page Making Invisible Disabilities Visible and put them to music.