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Showing posts from 2014

At physio and that #exercise thing again

Today was my second day at the Lifemark clinic, which is the physic clinic the insurance company sent me to for routine exercise. They did a great job the first day in review my problem areas which there are a few. Fibromyaliga leads to a lot of all over pain. Hypermobility on the other hand leads to very specific, painful joint pain in the ankles and knees... sometimes hips when I walk long distances as well.  Basically, you have three joints, all moving the way they please, and it makes things quite out of whack. The knees for example, the joint ball does not move at the angle it should because of the way my hips and knees move... thus causing a lot of pain. My feet, well, I have flexible flat feet and am very flexible in the foot, which apparently is causing my ankle to slack off and causing pain and stiffness in there. So leads to problems. Other issues are caused by the migraines, such as the constant neck pain. A lot of it then is developing all the right physio work to help wit…

Almost that #NewYear thing again

New year's resolutions are essentially a moot point to the chronically ill.

Sorry I already am loaded up on short term and long term goals right now. I am already adjusting my lifestyle. I am already increasing my exercise. I am already doing an infinite amount of things for pain and my health... what more do you want from me?

I mean really.

Yet, every year I think to myself why not add on Another goal.

Well don't.

We do have enough goals. Instead just consider reflecting on the goals that you have established for yourself. Consider things like:

Do you have too many? It is easy to be overwhelmed with all the things we Should do when it comes to our health and therefore we pick too many damn things, such that we fail at a lot of them. No progress gets made and we feel horrible. Because we have too many goals outstanding. What is it you want to accomplish? Break it down. Choose the important one. Go for it first.Pacing. Sometimes we give things up too quickly because it takes tim…

Think #now, not the past

Your future will never be a reflection of your past, let alone this idealized form of the past that never existed. We are all a little guilty of framing our past in either a rather rosy light or a rather negative light. It is the way the brain is designed to highlight key aspect and haze out the dullness.

Nevertheless the factors that existed in your past that you believe made things better will not be the same factors you will experience in the future. You will never have the same set of factors again. Not to say the future may not be awesome with some awesome factors, just that they will all be different. Age amongst them.

I think about the aspect of pain for example. That will never be what it was when I was younger. Pain has morphed in my life. It has grown into this living breathing beast. It has expanding into more than one pain condition. Hard not to idealize a time when there was just One pain condition, isn't there? I think to myself that I really coped well back then. B…

I got pain for Christmas... but lots of other things too so it is all good.

My morning...

Lack of sleep and pain just made me want to stay asleep. But Christmas and presents!

So bring it pain!

Okay don't bring it that much. I took a pain killer. It seemed to do nothing. Forget that then.

I will enjoy myself even if I have to walk grandma speed... and by that I mean slower than my grandma. Going oooh eee aaah eee that hurt, aah son of a monkey licker that smarted.

Because Presents!

No really. I love Christmas.

Yeah. That happy.

It was a good year. I went to visit my family last weekend and opened presents there as well as had dinner and played cards. We came home and opened more presents... because I could Not wait. Then we got some in the mail, a friend gave me one and my spouse bought me a few more for Christmas day! Yay! So today had more presents to open and another turkey dinner my spouse cooked for us.

So it wasn't pain free? I really didn't expect it to be. Would have preferred a Little Less pain to be honest but sometimes it is what it is.…

Cup o' tea

This Christmas I got loose tea from my mom and spouse. My spouse bought me two bags of tea, whereas my mom bought me that three canister set there. My mom also bought me that tea maker to the left and my spouse the cup with net in it to the right. So I am all set now!

You see we have a tea shop that recently opened in town so we have a readily available source of a variety of teas. And for me I thought tea is better for me to drink than diet coke, so adding it into my diet is a good thing.

They have teas there for different specific things as well. All sorts of different ones really.

I have tried their mint tea and it is very good. It is called Moroccan Mint and has Green tea and Moroccan mint. I general use mint for soothing nausea. Green tea of course is a good one as well for other things. I just have a sample of this one though, so I will have to pick up more.

What I have a lot of is called Peace of Mind. He said a lot of people find it good for stress but it is actually good for…

The silent scream

This image reminded me of those times in my life when I was trying to function with acute pain.

There is just something about working with acute pain, and being able to mask it, while thinking how the hell can people not See This? How can they not see in my eyes how much pain I am in? How much effort it takes to just exist let along think through all this pain noise?

You feel like it is one long silent scream that no one ever hears. It is there. Just never heard. Always beneath the surface. Never coming out.

And it is a horrible feeling.

When it got really bad, unbearably bad my facade would get this small cracks in it. Some people would notice but not all. One thing that happened is that I would laugh at some joke I made and it would be a good solid laugh... and inside despair would well up suddenly and tears would suddenly be There, and I would have to choke them back. You see all this emotion from the pain was just right there. Because I just could not handle the pain. I could not…

'Dealing with the same hell; just different devils' #ChronicIllness

For my reflection today I think this one is perfect for all of us with chronic pain and chronic illness.

'We're all in the same game; just different levels.'

We all have illness and pain. We are all dealing with something. We call all relate to each other on that, even if we have completely different disabilities. But we can also be on different levels of the game. I know people with fibromyalgia that are incapacitated with it. I am not. We are on different level.

'Dealing with the same hell; just different devils'

Chronic illness is extremely difficult to cope with day to day. We all have our ways of coping. We all have our struggles or devils that are obstacles to our coping. In many ways we can relate to each other on the suffering it causes and the difficulties of coping with our conditions, even if the devils come in different forms. For example I have problems with depression. I know others have problems with anxiety, but that is never something I have battl…

10 #Fibromyalgia problems

1) Dramatic statements... that happen to be true.

2) Fibro fog so bad instead of ironing our shirts we ironed our grilled cheese. At least it worked.

3) Putting up with strange medical tests and procedures.

4) So sore we do not like the touchy

5) Stairs...need I say more?

6) Have the case of the drop-sies way too often

7) Have to plan our planning. Sticky notes on our sticky notes.

8) Hate doors, but not as much as stairs.

9) Lose our ability to use our words.

10) So photophobic we are cool

#Fibromyalgia: You are just a perfectionist

I just read an article on that whole type A personality business with Fibromyalgia and IBS again. And it bothers me because it seems like a rather large assumption they are making. And... I have a type B personality type.

Here is what it is actually stating here:

"biopsychosocial hypotheses abou chronic fatigue syndrome (CFS) posit that personality and stress have predisposing and perpetuating roles in the persistent and unexplained fatigue that characterizes this functional somatic syndrome. Some studies indicate that many CFS patients are characterized by an achievement-oriented and perfectionist personality, and that such tendencies coupled with self-criticism drive these individuals to work beyond the point of exhaustion in a way that may initiate or perpetuate chronic fatigue.
Although research indicates that CFS patients use maladaptive coping strategies more than healthy controls, it is unknown whether this is true relative to other chronic illness groups.

"The only thing I know is this: I am full of wounds and still standing on my feet." #StillStanding

This is a powerful statement "The only thing I know is this: I am full of wounds and still standing on my feet."

Suffering is something that is universal in experience. The degree perhaps changes, but we all experience it. We have an amazing capacity to endure it and overcome it.

With chronic pain I can say Here I Am. I am still here. Through all that pain. Here I stand. Although perhaps my track record in life is not 100% as they say, since I did try to end it all. But I have survived to tell the tale and even that tale taught me a lot about suffering and coping with suffering.

We earn every scar we have from this battle. We are covered in wounds and scars no one sees and earned every one of them. And we still stand.

It isn't a matter of our strength though. It is a matter of we want to live. We want to survive. We want to endure. How people live with pain... is that they do it... because they must. That is not strength, it is fact. It is this very desire to persevere …

I'm #Fine-ish

Do you tell the truth? Or do you say 'I'm fine'.  Mine is 'Pretty good.'

Yes, in fact we are liars. We do not tell the truth all the time. And for good reason. The truth is painful to discuss all the time, especially when we ourselves may be trying to distract ourselves from the pain at the time. It can be inconvenient, as in you may be out in a social gathering and to start disusing the truths of chronic pain life is rather harsh and a bit of a depressing topic to people who do not comprehend it and have no clue what to say to you when you have then spoken some of that truth. It can be that we know people just do not want to hear it all the time and we ourselves do not want to be perceived as chronic complainers. It could simply be we do not want others to worry. It could also be we ourselves do not feel like talking about it.

Most of all, the truth is a deep, heavy topic that scares a lot of people. We can be vague and light about it. But if we gave them the str…

The world #breaks everyone, and afterwards, some are #strong at the broken places

I chose two pictures I created for my reflective blog post today. The first clearly expresses we can have wounds that are never seen. We can have invisible disabilities that do not show. They can cause a lot of isolation and suffering. Coping can be a constant struggle. A lot of wounds that never bleed.

"The world breaks everyone, and afterward, some are strong at the broken places." This quote is a favorite of mine. You see chronic pain, chronic illness, have broken me. I was suicidal. I tried to kill myself. And I don't even just mean this extreme. Chronic illness and pain erode us. It is isolating. It is draining. It is a constant battle. There is no break. No victory. There are times when we cope very poorly. It is a constant struggle. At times it feels like it breaks us down pretty good.

I like to think I am stronger in my broken places. That when I get back up, dust myself off, try again that I learned a little about myself and my capacity to cope from the experi…

Went out and about to a #Chsitmas Party

I managed to go out to my spouses work Christmas party. I think that these sort of social gatherings are vital to boosting the mood at times although it can be difficult to participate. I had a pretty good day overall. I was sore in a fibromyalgia way because I cannot sit in one position long without feeling the pain from that... and it is just how it is that you end up sitting in the same position for too long at these sorts of dinners. Even though you can do some walk-abouts or even some dancing, when the times comes for it.

I had been in the pre-migraine phase (Prodrome and aura) for a good portion of the night. So felt a little doppy and not really into the flow of things. You know how that is. You can actually see it in this picture taken shortly after dinner. My eyes are wide, to keep them open. And they look poofy... which is just a migraine thing sometimes.

But I felt decent. Just you know... a little out of touch with conversations and the flow of things. A little unaware as…

Reversing #ChronicPain? Tell me more

We all know that the medications used to treat chronic pain from anti-depressants to anti-seizure medications have a long list of side effects and very little actual pain reducing effects. Take fibromyalgia as a very good example with the three approved medications being Savella, Cymbalta and Lyrica... however, when you look into it very few people get a positive result and that is not counting the side effects they put up with for that. So are they really all that effective when so few of the FM population even respond to them? Apparently good enough. Then there are the pain killers, which when it comes to chronic pain you might as well call pain dullers... for a short duration in time. Never a great solution and one with a massive stigma these days. We have all sorts of other alternative treatments but that is not what this is about. This is about Actual treatments... and one coming down the line that might actually do something. Color me intrigued.

"Activating A3 receptor with …

#personality and #ChronicPain

I have thought often about personality changes and chronic pain. I have written about it before in How Chronic Pain Affects Personality. The fact is pain is a significant, constant stressor on us that has to impact certain factors of our personality. Immediately I believe we are impacted just in how we cope in how we hide the pain... in the facade we adapt to mask the pain. This facade of wellbeing often becomes a part of who we are. However, over times there are other changes that can happen. I have becomes more isolated for example, since pain certainly when I was working made it difficult to just have the energy and capacity to engage in any extra activities beyond work. That led to a rather hermit lifestyle.

A study looked into some brain changes that could account for some of the personality changes we see in chronic pain conditions.

"interested in finding out whether more subtle changes to the brain, known to occur in people with chronic pain, could also lead to shifts in …


I finished my Christmas shopping. Like most people with a chronic illness I did most of my shopping online but I also did some around town. I avoid large shopping malls as I tend to find that exceptionally draining. Just the walking, commute and the crowds is a bit much for me. But I can hit a few shops in town without problems.

It is the season of stress!

If you do not do the online shopping then remember to take a lot of breaks!  And you do not have to do it all in one day. It is always better to go with a list and just go in and out. Know what you are going for so you do not have to linger.

I know this time of year can be pretty stressful for people. And I like to say to try and keep it simple but that can be difficult. I know a lot of people like to do the big family dinners for Christmas. But there are options there. You can do a lunch instead and do platters and cold cuts. You can do a pot luck dinner and have everyone bring dishes... that is always a fun one to do and a lot ea…

The #pain doesn't go away. You just make room for it

I think something I have come to terms with when it comes to chronic pain is this realization that the pain will not go away. That is this actual physical sensation of pain will not go away. It can be lessened to some extent with various different medications. It can be managed with various different methods. But it will be there.

I always knew this but there was a time a long time ago when I had believed the migraines at least would go back to this low monthly, quite manageable level. And that would have been quite nice. I don't believe that any more simply because even with the best most effective preventative medication and the most effective response rate I would still be chronic... but quite a bit Less chronic than I am now. So there would still be quite a lot of migraine days. Not counting the fact the fibromyalgia is a never-ending story of its own.

So there will be pain.

But you make room for it. Because you must. And we all know this because we all know that we develop a…

Sometimes people don't think before they speak... and it #hurts.

I have had an acute migraine every single day for the last week. I mean one of those migraines that starts early and the pain level is at a 9. Difficult to manage and treat. I believe I have the lovely weather to thank for it to be honest.

So it had been difficult for me to manage much of anything. I have been taking more triptans than I usually do, but less than the maximum. I am just very sensitive to them so a lot of side effects therefore I am told to take them rarely. However, when it comes to fighting migraines at this level they are the best bet I have of getting any real relief.

Then my spouse says flippantly to me... that he noticed I have not showered every day and he does not like that fact. Which upset me quite a bit. More than quite a bit. Hell, it upset me a lot.

It is not that I am intentionally slacking on my hygiene. It is that when I am in a lot of pain, so fatigued and my scalp and skin feels on fire... I figure one day of not showering when I have not done anything…

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…


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.