Sunday, December 21, 2014

'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 battled before. We are all different comorbid mixes; different devils. But the suffering is the same hell we all deal with.

Wednesday, December 17, 2014

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

Monday, December 15, 2014

#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.
This study examined perfectionism dimensions and maladaptive coping styles in CFS patients compared with healthy controls and two other chronic illness groups. Participants were drawn from a larger sample of community-dwelling adults from the USA or Canada (n = 980) who completed an anonymous online survey on personality and health after providing informed consent. Authors selected individuals who indicated on a medical checklist that included 13 different chronic health conditions that they had been diagnosed by a medical professional with CFS, irritable bowel syndrome (IBS), or fibromyalgia (FM)/arthritis for 3 subsamples.
The remaining participants were screened for the presence of other chronic diseases, leaving a final healthy sample of 564 subjects, which was divided into 6 random samples of comparable size to the illness groups, one of which was randomly chosen as the healthy control group.
Maladaptive perfectionism was significantly correlated with self-blame coping in both the CFS group and the healthy controls. The correlation between maladaptive perfectionism and behavioral disengagement coping was also significant for both group. However, these correlations did not differ significantly. Standards perfectionism was not significantly correlated with self-blame coping in the CFS group, but was negatively correlated in the healthy controls. The correlations with behavioral disengagement coping were negative in the CFS group and controls, but not significantly different. In the IBS group, maladaptive perfectionism was significantly correlated with each of the 4 maladaptive coping styles, whereas standards perfectionism negatively correlated with denial and behavioral disengagement.
In the FM/arthritis group, maladaptive perfectionism was significantly correlated with all but substance use coping while standards perfectionism was not significantly correlated with any of the coping strategies.
Overall, these findings suggests that maladaptive perfectionism promotes self-critical thoughts that fuel a tendency to cope with stress by becoming consumed with self-blame rather than taking constructive action, a tendency that may be pronounced in the context of CFS, and that contributes to the prolonged chronic stress and subsequent allostatic crash posited by previous studies. Furthermore, they provide evidence that cognitive behavioral interventions that target perfectionism may help enhance the coping capacities of people with CFS." Science Codex

Hate to say it but I am not a perfectionist in any sense of the word. Therefore, we are looking at a generalization. My coping strategies generally are not maladaptive either, although we always have to be on thee look out for behaviors that become so when we are coping with chronic pain and chronic illness... some habits can become maladaptive. Even before my illness began I was not a perfectionist. I was the sort of kid who used to work on a term paper the night before and still get a good grade because I am smart, not because I am that inclined to do well. I never worried excessively about doing well. Just did what I did and let the chips fall where they may. Never stressed over tests, just studied and then did. And never experienced test anxiety, as it never occurred to me to worry before hand. Had some horrible speaking in public anxiety because I am rather reserved and shy though. I am just rather easy going and laid back to be honest. I do worry in excess but stop myself when I realize I cannot do anything about it. I am very indecisive and then make quick decisions when I realize mu indecisiveness is causing me stress. Just not a perfectionist. I am a disorganized, procrastinator that is a little flaky and really absentminded. Not so much a perfectionist and over-achiever, eh?

The fact remains they like to toss this out there because it it is our Personality, and Stress then it is All In Our Heads and Somatic. In other words not Physical but Mental. And that is another story altogether.  That is ignoring a great deal of evidence. That is not to say stress and how we respond to it is not a factor. The way we are physiologically means we have a messed up stress response... not stress first then slippery slope into disease, disease first and then poor stress response. In my opinion, of course. You just never know.

Saturday, December 13, 2014

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

In this picture is my common-law spouses shadow by the way. Instagram photo.

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 that enables us to strive. Enables us to continue and fight. And then hope, well, hope is that which makes us believe there is something worth fighting for.

Yes, this battle that has wounded us and seared us with invisible scars changes us in profound ways. How could it not? Some of those ways are in fact positive ways. Some of the things we learn about ourselves, others and the world around us have a profound impact on how we see things.

Thursday, December 11, 2014

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 straight up brutal tale that is chronic pain it is frightening and scary and they have no ides how to respond to it. We don't even want to discuss this truth all the time... that is how deep and intense it is. We instead try to distract ourselves from the pain, not dwell on it.

There are times when we say 'This is my world. This is my struggle and this is the way it is.' and just rant for a bit about what our existence is like. Sometimes we need to get that out. Can't have all that truth just buried within us, eating away at us. Making our isolation that much more profound.

There are times when we sneak out wee tidbits of our existence and expect others to weave together a blanket of what it is to be chronically in pain from all the clues we drop all all the little phrases and all the little behaviors.

Even 'I'm fine' is a clue in itself. It Never means that. Not ever. People should just take that to mean we are in pain of some sort but don't feel like expanding on it at that time.

When I say 'pretty good' I actually mean I 'mentally and emotionally' feel pretty good about the pain I am in at that moment. Pretty good mental day.

There are reasons why we use the 'I'm Fine'. It is fine to use it in fact. As long as we actually have people in our lives, or online, that we can be brutally honest with when we need to be, then we do not need to discuss the brutal, intense details every single day.

Monday, December 8, 2014

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 experience. That I can cope better because of the experience. Or at the very least learned I need to know more about how to cope to deal with the pain.

In some respects this is just a belief I want to have. It is comforting to believe that I am stronger for all the struggles I have gone through. That somehow I have learned something through the difficulty. I truly want to believe this.

In some respects it is a fact. When I was younger I knew nothing about how to cope with my initial diagnosis and it took a lot of difficulty and struggle to figure it out, but figure it out I did. And then did the same with diagnosis after that. That person I was is not the same person I am now. I can cope a lot better than I could back then. We never give ourselves enough credit for the skills and methods we have learned along the way and which work to help us cope every single day. Not to say we might even improve on them, but the fact is, they are vastly improved on what we began with.

In fact, we are stronger in our broken places. But we have broken places. And we have more than most people do. And they are all wounds that cannot be seen and do not bleed.

Another fact, we are at more risk than others of breaking. We have a lot working against us. More likely to have suicidal thoughts. More likely to commit suicide. More likely to have comorbid depression or other mental illnesses, if those are not our primary invisible disability to begin with.

We fall. We get up. We cope poorly. We cope well. It is a process we go through continuously and we must always be aware of the dangers that can occur along the road. Like when our pain exceeds our capacity to cope.

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 such. But happy to be there. And not in any pain yet.

There was a great meal. Lots of good company to visit, as I know more people this year. I had a little to drink... light, light beer which generally treats my brain fine. And I think in this case slowly the migraine down by inhibiting me feeling the initial pain by a little. Since I did get a headache and sort of ignored that. The lights in the room were bothering me, and I ignored that. I was having a good time at this point. Even went and danced for a few songs anyway.

All in all I quite enjoyed myself. It was nice to see everyone again and to spend that time with them all. Wish I had been a little more cognitively present, but most people didn't notice because they got rather tipsy. So that was all good.

I on the other had did get my full blown migraine by the time I was home. Like it was waiting to pounce on me. Pounce it did. Better than last year, where that happened during. Still it sucks that with migraines get get laid out for the migraine, not the hangover. And it took me some time to fall asleep with it. Which is all you can do if you have alcohol in you, because you cannot take a medication for it. So sleep it is. Which does work wonders. You wake up feeling great. Ready to take on that days migraine when it comes.

In the picture of me I have a velvet jacket, a vest and see through white blouse and black pants on. It looked pretty good. Just a mix of old work clothes and a new blouse really. I had intended, spontaneously, one night to wear a dress. You see I was online... on my sleeping pill which lowers my inhibitions a bit. Saw this dress and though, hey, I should order that. I did in fact order it and boots to boot. From the UK, so they are not even here yet. Lesson here is do not shop for things when you are on sleeping pills. It is a bad habit.

I hope you guys get out there and do something special for one night at least. Have a little fun, within limits. We often have to get out of our comfort zones doing something we know will cause us pain, because we know it will also give us joy. And we need some joy this time of year. I hope you have a good pain day when you do. But travel prepared!

Thursday, December 4, 2014

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 adenosine molecule prevented, reversed chronic pain

The researchers analyzed more than 300 rodent models of chronic neuropathic pain - pain that results from nerve damage.
They found that activating a receptor in the brain called A3 halted or reversed chronic pain in the rodents, and that this receptor could be activated by a small adenosine molecule and other small-molecule medication created by the National Institutes of Health.
What is more, activating the A3 receptor with a small adenosine molecule did not alter the normal pain threshold in rodents or trigger the reward center of the brain - a process that can lead to addiction with opioid use.
Commenting on their findings, Prof. Salvemini says:
"It has long been appreciated that harnessing the potent pain-killing effects of adenosine could provide a breakthrough step towards an effective treatment for chronic pain.
Our findings suggest that this goal may be achieved by focusing future work on the A3 adenosine receptor (A3AR) pathway, in particular, as its activation provides robust pain reduction across several types of pain."
The team notes that A3AR agonists are already undergoing clinical trials for treatment of inflammation and cancer, and - as demonstrated in this study - the drugs have caused no serious side effects so far.
"These studies suggest that A3AR activation by highly selective small molecular weight A3AR agonists - such as MRS5698 - activates a pain-reducing pathway supporting the idea that we could develop A3AR agonists as possible new therapeutics to treat chronic pain," adds Prof. Salvemini."

'Robust pain reduction across several pain types'. Now that is what I am talking about!  No serious side effects so far, who knows what that means but lets hope it isn't the long lists we deal with now. I am fascinated by this idea anyway.