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Showing posts from November, 2014

More cowbell

I think... I really think my life needs more cowbell. If you like Saturday Night Live then you will get the reference anyway. Love that skit.

By that I mean it needs more Joy. I think we could all use more joy but definitely those of us with chronic illness. Fatigue I think really drains us a lot. We are just really dragged down to the point we have no energy to engage in the things that give us joy.

We should not avoid joyness. Even if that is watching a joy that makes us laugh a little.

Nothing wrong with being a night owl... but the world isn't

I have been an insomniac since I was a kid. I have some fond memories of it really. I don't think it ever really bothered me that much as a kid that I Could stay up later than everyone else. I enjoyed the peace and quiet of it. I love to read at that time. To write. Still do. It only became problematic when I went to university and had more early classes. I mentioned it more than a few times to doctors but they do not do anything for chronic insomnia... except give you those some sleep hygiene tips you have already learned about years ago. And those tips are essentially:

 • Avoid stimulants such as caffeine up to four hours prior to bedtime. Caffeine builds up in the body through the day so it is best to avoid after lunch. (we should avoid simulants anyway… but seriously this is hard to do when you feel so fatigued from Not Sleeping)

• Maintain a consistent sleep pattern of waking up and going to bed at the same time. (Well going to bed at the same time, not necessarily falling …

Where is that #Pain?

The location of pain is actually a rather complicated issue. Especially when you get into chronic pain where the trauma to the body is long since recovered, or was never there to begin with. New research suggests a lot of pain is really in the brain and less in the body, when it is chronic.

Science has almost adopted the idea that pain ought to be all in the brain. There is sophisticated research showing that some brain areas light up more when we are in pain. When we recover, these areas stop lighting up. There are even therapies directed at “retraining” the brain, which can sometimes reduce, or even occasionally cure chronic pain.
So scientists have developed the following concept: after injury or operation our tissues will heal, and normally all goes well - unless we are “vulnerable”. There is some evidence suggesting that when we are poor, smoke, are depressed, stressed, or have had chronic pain in the past, we may be more likely to develop chronic pain.
The idea is that the…

#FibromyalgiaPalmChallenge

To #Live is to #suffer, to survive is to find some meaning in the suffering

"To live is to suffer, to survive is to find some meaning in the suffering."

I find a great deal of truth in this quote... and not simply because I have chronic pain, which of course would literally be to live and suffer. The straight up fact is life is complicated and comes with all sorts of wonderful complications and pains. Also joys and sorrows.

Think of the Buddhist saying 'Life is suffering'.




The Buddha says, "Life is suffering". What does "suffering" mean? The sutras say: "Impermanence therefore suffering". Everything is impermanent and changeable. The Buddha says that life is suffering because it is impermanent and ever-changing. For example, a healthy body cannot last forever. It will gradually become weak, old. sick and die. One who is wealthy cannot maintain one’s wealth forever. Sometimes one may become poor. Power and status do not last as well, one will lose them finally. From this condition of chan…

Behind that #smile

"The single most clever thing about a smile is how well it can hide sadness."

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 laugh…

#Functionally #suffering

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 …

Deserving of #pain #management and a better #QualityOfLife

“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.

La…

#winter #pains

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. An…

#yearn for #more

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, y…

Reflection Essay: All about the pain, chronic that is

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. I have fibromyalgia and chronic migraines both of which are chronic pain conditions. So I'm going to talk about the pain, which is something people intuitively get. I say migraine; they...

Facing that #PastSelf and #FutureSelf

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 o…

Brainless Blogger quote mix

 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.

Snap! #Winter

 As a Canadian, despite our very nice October, we knew the inevitable winter was coming. And with a cold snap it has arrived.



And with it... Pain. Yes, it increases that every day chronic pain level. That baseline pain level. It hurt to walk today even more than it has for the last few months. As I have had a flare up in my ankles for some unknown random annoying reason. That, hurt more today.

When I tried to exercise it was a venture that simply was not going to happen. I began and got nowhere fast due to the instant pain increase. When I stopped that ankle pain was even worse.

So Son of a Nutcracker indeed.

Deal with this every year though. I hope it will not interfere with my exercise too much. Maybe slow me down a bit I expect, but hopefully not too much.

But it is the season of the brittle coldness and pain. It is just a cold snap so far. We will get some better temperatures before it really gets brutal on us. Or so they say.

#Friendship and #ChronicIllness

Friendship with chronic illness in my past has always been something I have struggled to maintain. You see I am an introvert and for me friendship has always been something I have had difficulty in the long term. I value my alone time and so I have to balance that with social time with friends. Add in chronic illness and pain, well, that cuts into social time. You need to conserve your energy for important things like school or work. So you limit your social time. I admit only a few friends in my life have grasped how difficult it is for me to balance my obligations and my chronic illness, let alone anything else in there. So friends drifted away. Something I have always regretted but it was just the way it was. Sometimes it was simply distance. If they moved to far away I could not drive to meet them all the time, as that is something that uses that reserve of energy so those relationships inevitably drifted apart. Others it was simply that they get tired of the fact I say no more th…

Went to a concert... out of the house!

I went to a concert today, which is always a tricky venture if you have fibromyalgia and migraines. For FM it is the sitting. A lot of pain to be sitting that long. Worse to stand that long. For the migraines, well, that is just the sound and the light that are insane triggers. So needless to say the last time I went to a concert I was in my early twenties. Or maybe 20? I might have actually been 20. So about 17 years ago.


I went with my common law spouse and a friend of ours. This is us here. My spouse, me and our friend.

The concert was at a local reserve in a casino, so not a large concert hall, which is a good thing. Not crowded, or as noisy because of that fact. It was a country band, which again is not as intense or loud. I brought ear plugs because if it did get too loud you can wear ear plugs to dampen the noise and still hear it. I also brought my triptan and a pain killer... always be prepared I say.

It was not my idea to go to this concert, by the way. Not exact my first ch…

The Mask #Poem

Mask
This mask I wearis a burden I bear
The pain is leaden; dragging me to the groundI smile through it; don’t make a sound
This mask I wearis my despair
You demand my silence;With the guilt and shame.I made the mask for you;For you I play this game.
This mask is me;All you can see
This is a poem I wrote about the mask I wore to get through work every day. A facade I used to mask the pain I was in from customers and co-workers and to get the job done. At the same time I faced a lot of stigma there and I wore a that mask to hide the suffering I was enduring because they were incapable of compromise but loved to play the 'you should feel guilty for being ill' game.  

Do #migraines make it hard to #think during an #attack?

This study needed to be done. Am I dumber that dirt during a migraine attack? Or we can phrase that as; am I cognitively compromised. Whatever. We need to know. Because it feels like the IQ was sucked right out of my ears.

Researchers in Brazil and Portugal took 39 people with episodic migraines to study if their thinking was impacted by a untreated migraine attack. That isn't to say treating the migraine would be different, when in fact it can actually enhance the problem, it is just that it creates more variables they would have had to consider.

The resulting findings were that, yes, indeed, we have trouble thinking during migraines and this is actually significant enough to measure. Awesome.

The study concluded "Cognitive performance decreases during migraine attacks, especially in reading and processing speed, verbal memory and learning, supporting patients’ subjective complaints. These findings suggest the existence of a reversible brain dysfunction during attacks of mi…