Monday, August 3, 2015

#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.

Saturday, August 1, 2015

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.

Friday, July 31, 2015

Fibromyalgia study on #Pain and the #Brain

Once the pain was applied, however, people with fibromyalgia had increased connectivity between part of the somatosensory cortex and the anterior insula. The somatosensory cortex is the area that receives information about physical sensation, such as pain, from the nerves and spinal cord. The anterior insula deals with autonomic information (the automatic functions of your body) and assigns importance to them, thus telling your brain what to pay attention to.
This suggests that in fibromyalgia, our brains assign higher importance and prominence to pain.

It's not that we're "making a big deal" out of it, as in over-reacting. We're subject to a physiological emphasis in our brains.

Think of it like this: It's the difference between when your toddler calls for you and when he shrieks for you; or the difference between hearing a phone ring in the middle of the afternoon and responding calmly vs. it ringing in the middle of the night, yanking you out of sleep in a panic because something must be horribly wrong for someone to call you at that hour.

I can certainly relate to the difference. My fibromyalgia is in remission, but I'm still in significant pain because I've developed arthritis. I remember how fibromyalgia pain seemed insistent and made it difficult or even impossible to focus on anything else. The pain I have now often hurts just as bad, but it's a lot easier for me to tune out.

Researchers also say this study suggests pain, pain catastrophizing, autonomic dysfunction, and pain amplification in us are all linked to this increased connectivity.About |Health

"Has anyone ever told you it seemed like you were obsessed with your pain? It's a fairly common thing for those of us with fibromyalgia to hear. Doctors use the term catastrophizing, meaning that we treat pain as a"About |Health  Well, no, but the term catastrophizing comes up often with FM and chronic pain. I always wonder about that. Am I doing that? Or is it the nature of pain? Perhaps... it is the nature of FM pain.

It is our brain putting some extreme emphasis on the pain. Feel me. Pay attention to me. Focus on me. In other words FM pain is a very demanding and insistent pain. Not easy to ignore.

Oddly enough I find this to be true with flare ups but not so much with my baseline. I notice it. The pain is always there and I am aware of it. But I find migraines to be more persistent, insistent and demanding pain wise. I have a harder time thinking through them and ignoring them. Of course, that might be because I have FM... and it affects how I feel all pain.

Tuesday, July 28, 2015

Exceptionally long #pain week

A week of acute migraines I have been unable to treat. Along with some unpleasant FM symptoms. And I am tired. Making this week exceptionally long. It is times like this I really regret working. I am drained to my core.

I have not been able to sleep well. Obviously. Not with this level of pain. The way it always goes.

There is no actual solution to this problem and that makes my mood rather low today. Sort of just want to just sleep for a few days to recover. And I am in fact counting the days to my next day off, but that seems an eternity away at this point.

I remind myself there will be bad says. Unfortunately they tend to really cluster together into a brutal bad week. That is just the way it works.

I hope everyone is having a low to moderate pain day. It is difficult to get through the bad days I know. We have to distract ourselves from the pain, but the level of pain makes it difficult to distract from. It is hard to maintain our mood. Hard to sleep. We just have to take it easy. Get through it moment by moment. Know that the high intensity times do not last forever. It will get a little bit better. It is not wrong to relax. It is not wrong to take your time. To relax. I know that working makes thing exceptionally more difficult than we would often like in pain and there really are no easy answers in this case, except to find a solution with your employer to adapt to the workplace, do flextime, work from home or work less hours. And I would say we all should consider such options, but the pain clinic has told me to work part time and I have yet to mention it to my work place because I am stubborn and I feel that they will not likely go for it. I feel that it will bring unnecessary stigma into my work enviroment and I loath that sort of stress. Stigma at work brings a whole level of stress that I really do not welcome on top of coping with the existing pain. So I am just considering my options. I am also dealing with some medication changes and seeing how that works out.

the aura show

The one thing about persistent migraine auras is that they are there migraine or not. It used to be they were this awesome warning system of Impending Doom. As in I would get this atypical migraine aura pretty much an hour before the actual horrific headache portion of the show began. It was perfect for taking my migraine abortive. Talk about knowing exactly when to take your medication when you start going sparkly blind in one eye.

Not so much any more. I have much more diversity now as well. So much more visual auras to go around. And very few of them warn me of Impending Doom. Well, not visual ones anyway. Tingling in the hands or face is pretty much a dead give away though.

But it does vary. There is the halos around light. Where the lighter it is the harder it is to see, because there is fuzzy halo around all light sources. So if someone is standing beside a window... can't bloody well see them. Starbursts often come with halo days... they are when you see something like headlights but the light expands outward like a star. A common aura of mine I get very frequently replaced my regular aura, but is a persistent migraine aura now, it is this broad arch of multi-colored pixels of light in both eyes over about half my vision... fluctuating and pulsing for a good five to eight hours. It expands from a small portion of my vision to a larger portion... sometimes a significant portion. Other times there are dark spots, blind spots, blotches of white, raindrops of color. Another common one that comes on in bright light exposure is a vibrant vortex of light with a blind spot in the center. It reminds me of a flower, with pedals of black, iridescent blue and pink expanding open and closed. It tends to get larger as time passes and is always in the core of my vision.

It would be like if people could see a rainbow... the colors are similarly vibrant and translucent... but fluctuating and pulsing. Overlapping reality. Distorting reality. Another aura I can get is where lines, like corners, patterns, lines all warp and contort... so that makes it difficult to look at things. But you can see how many of these things are difficult to describe. I can say sort of like some fireworks. Sort of like a twisted rainbow. I often wish I could take a picture or video of them just to share the experience. Often wish I could show them to my neurologist as well so they could understand how disruptive and distorting persistent migraine auras actually are... given they light show does not shut down, just changes from day to day.

It is sort of problematic and enchanting. In some sense I am entranced by this light show. In a way it is often Too distracting. It takes away from reality in ways you really don't want it to at times when you need your attention. But sometimes I will just watch the light show because it is that fascinating what my brain is producing... this illusion. Very problematic when you need to see fine detail. Drive. Pay attention. Want to see. Things of that nature. And also very unpredictable with persistent migraine auras... you really have no clue if the phenomena will last all day or a few hours. My vision, in some fashion, is compromised in some way every day at some time.... just depends on Degree.

Sunday, July 26, 2015

The Truth

It is not that they cannot handle the truth so much as they do not want the whole truth. They want the story version we tell to make people feel comfortable. A little struggle in there. How we cope. Maybe some treatment in there. Viola the chronic illness life. Not. Quite.

The truth. The whole truth. Has a lot we leave out. Like some days the pain gets the best of us and we wish we could just lay down and never get up. Or our anger a frustrations we face with our limitations. Or the endless guilt we feel being unable to do what we feel we should do. Even discussing the stigma we face is often something we do not discuss all the time. There are many facets of our story, the darker aspects, the more complicated day to day aspects, the grind of the day to day pain... that we tend not to reveal because it makes people uncomfortable.

They are uncomfortable because if they love us, there is nothing they can do to stop the pain and suffering and that makes they feel horrible. We don't want them to feel worse, so we waterdown what we say. It is uncomfortable to friends because if you told them the raw, blunt truth, they would not know what to say back. They would be at a loss of words because they have nothing that compares or relates to that. It is easier to keep it simple, direct and easier for them to understand. So they feel they understand what you go though and feel they can support you.

And hell. for me, lets face it I am not about to be telling people the straight up raw, brutal truth. It is hard for me to admit to the toll pain and illness has on me out loud. Like it makes it so much more real by saying it. Admitting to it just seems weak. It makes me emotional and upset when I think of the impact and try and explain it. And I tend to like to keep the buried in me where I can mask it and not think about it.

Friday, July 24, 2015

Working with Chronic Illness

I had a conversation with a customer a few day ago about chronic illness. He was recently diagnosed with MS and still getting used to it. He was using a Alberta service to get back into the work force fitting his new needs. Because you have to work, to have something to do... long way to retirement and we are still fit enough, capable enough to do so.

I though about that and thought... damn straight. Yes, we have a chronic illness... or more than one as the case may be. And yes it is difficult to cope with and we have to know our limits and moderate our activities. And yes this does factor into what jobs we can actually attain in the first place, and how much work we can actually do. BUT, we have a lot to offer. We are capable in many ways. We get a lot of benefits from working. We have the desire, the motivation, the need often even... so there is no reason we should not get assistance to be placed in a job that would work best for us.

He helped me see it is a better light that I currently was. Which was... tormenting myself to get through the day. Working for the sake of working because apparently I am functional enough to work just enough. Although just enough in my case is part time, so I should not even be working full time. I think that is why my outlook is rather negative because I am exceeding my limits every day and it is beginning to have an impact. One impact seems to be I keep getting sick. Horrible flu. Then this virus that attacked my the casing around the heard. It is because I am tired, stressed and my immune system is suffering.

But this customer reminded me that we are people with health problems, but we are Not those health problems. We have a right to have a life like everyone else does. It is harder to manage in some ways, but we learn to adapt and cope. Work is one of those aspects that we want to attain and have to find something that works around our disability, or with it I should say. I liked the way he looked at it. I believe he is well on his way to coping well.

The main problem is finding that perfect Balance. A job you can sustain that does not make your health worse, and thus you perform well and do not miss work. That is difficult to find. Especially with chronic pain, that seems to just be so present all the time. Not saying it isn't possible, especially since there are some good employers out there. Just finding them is difficult.

I do know if we do not find the right balance we often exceed our coping, by pushing through the pain to work. We cut out other things in order to manage to get to work and then crash at home. Like cut out socializing and leisure activities. Using all your energy to get through work. And this never works for long. You burn out. Trust me. Happened to me often and went on short term leaves over and over and over again as a result. This is precisely what we should Not do. We need the right balance.