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Showing posts from September, 2016

Socializing: One thing that helped me

I isolated myself severely when the migraine became every single day. Combined with the FM pain it was too much to handle. I didn't want to go anywhere. Do anything. I just wanted to recover from work. I spent a lot of time in hermit mode and lost a lot of friends.... who simply moved on to do things with other people. It saddened me but I was also relieved because I didn't need to but effort into existing. That fake smile and hiding the pain to just be around people. It is human nature to socially interact. And I seem to have not thought about that when I self-isolated. Being an introvert... I didn't thrive on people. But even introverts need people; smaller groups of people, shorter periods of interaction maybe and the few select chosen ones we enjoy... but interaction nonetheless. Without it it can lead to a sense of isolation, lowering mood and other issues. So often the advice seems to be go forth a find people and be with them. Awesome. Where would this people be? A…

BrainlessBlogger: Invisible Illness Awareness Week Sept 26-Oct 2

Self-Care: When you are in a funk

I am in a funk. Which can happen from too much pain, fatigue or just from a mood drop. We just get in a spot where we are tired of being tired. Tired of the pain. Tired of thinking about the pain. And it isn't a good cycle to get into. I used to think I should just ignore it, push through it, don't think about it... push, push, push. But then you just burn through your reserve of energy, burn right out and get sicker. No, we actually need to know when things are getting bad we actually need to take care of ourselves. We matter. Self-care matters. We need some self-care STAT in a funk. I am an introvert and it reminds me a lot of when I *used* to go out to someplace really busy and hectic and it would make me just drained. All the excitement and the people. And I would need some serious downtime. Some alone time. Just me time. And chronic illness is a lot like being a super introvert. We have some serious reserves of energy and we need some serious down time. We also really need…

My brain is giving me that back talk

I am infinitely glad for my depression medication right now because I know my brain well and I would be having troubles. Without it I am getting some flak from my brain depression wise. I am stressed. I am in a lot of pain. I am not coping well. Makes my brain think some thoughts that are not necessarily fair. Like, you are functionally useless. You are worthless. You can't even work a simple job. You can't even maintain a part-time job. What is the point of a life like this? I feel hopeless because there is no solution to the problem and there never is a solution to the problem. I can't function. I try to go on long term leave and they claim I am functional enough. I go back to work. I can't function. Repeat. And I feel horrible about myself. My employer feels frustrated and angry at me. And I feel more and more hopeless. Because nothing changes.  My brain spins and spins. I get anxiety about working in pain. Worse about missing work. And then the guilt.  I do all th…

I need to work from home

I had that feeling again when i saw a post pop up in my email for a job post that would be perfect for me.Full-time though. And I craved it. I have the skill-set, the education, experience and ambition. But full-time exceeds my pain levels.  Of which I was reminded of today laid out from a migraine. Taunted by the pain.  I don't need the reminder. I am aware of this fact. But I crave the career I lost. I want the...challenge. The intellectual stimulation. And I do not want the pain.  We experience a lot of loss with chronic pain and this is but one facet that is difficult to deal with. People want to be productive. Want the financial stability. Want to challenge themselves. We do accept when we can't but it doesn't stop us from wanting it. We just have to replace it with other things.  Personally I want to work from home. I have this desire to work within an environment I can control with somewhat flexibility. I believe I would be capable of a great deal more in this envi…

People never see the worst

I often wonder what people think about my bad days. When I cannot leave the house. When I cannot work. I get this impression from my workplace they think it is all fun and games for me. That I am just hanging out a home chilling. I wish people could see being closed doors. First, in 'Society' on those moderate days or even rough days we lie a lot. We 'I'm fine' we have a public 'facade'. We present ourselves in a certain way, especially at work. To make it easier on ourselves and definitely to make it easier on others. But they don't know that. It is like they think on those day, those publicly presentable days, of our stoic pain face we are 'all good'. When in fact we may be quite the opposite. We are just that good lying with our faces and our body language because pain and illness is our Lifestyle. You get used to the game fast. Get sick of the platitudes and fake sympathy... even the real sympathy. And you want to trick your brain into function…

Fibromyalgia eye test?

Could fibromyalgia actually be diagnosed with a simple eye test?

It could very well be.

The Study

In Spain there was a study done Fibromyalgia Is Correlated with Retinal Nerve Fiber Layer Thinning, in PLOS One  where they look at using a OCT (Optical Coherence Tomography) which is a non-evasive imaging test to look at the retinal nerve fiber layer. The study had 116 subject with FM and 144 controls.

This layer looks to be atrophied in people with FM compared to their control group. Reminds me a lot of the brain imaging work where we have atrophying in certain areas there as well... but this can be easily imaged.

Apparently when looking at the retinal nerve fiber layer of the FM subjects there was axonal damage in the optic nerve even in the early stages of FM. 

<60 atrophy="" exhibited="" in="" p="" rnfl="" sectors.="" sub-clinical="" temporal="" the="">There was also distinctions found within…

Why I need gratitude

I have what you call a negative brain. Wired for negativity. I call it 'realism' and 'cynicism' but it is negative. Not about everything because I am also blessed with a awesome goofy sense of humor. But, when it comes to any scenario I go negative. And my spouse isn't wired that way at all. An example is something that is on my mind right now that I am in extreme worry mode. My spouse work place is being shut down. He will be laid off or moved to another shop location.  How he sees it: A) I will get moved to a new location and get to learn a new job. I have been working this job for 13 years and it will be interesting to try something new. I have been thinking of the idea of trying something new and this will be a great opportunity. Plus longer shifts will mean more money. B) If I get laid of there is a severance package and that at least will mean we will be fine until I find something new, which is a stress reliever in itself, right?  How I see it: A) Mass pani…

6 things I learned along the way #iiwk

I have learned a thing or two along the way. Forgot some and learned again. Learned the hard way. But learned. I have learned to pace myself or I will suffer the consequences of not doing so. I have also learned there are times I am willing to suffer the consequences on specific occasions if I have the recovery time. Like I went bowling with work for a charity event because it was for charity and i love bowling but there is a mighty price to pay for bowling, but I happened to have time off after to recuperate. I have learned to stay within my limits. However, I have learned this doesn't mean not doing things or trying new things. Or testing my limits on new things. Exercising for example you have to find where you limit is to find your starting point. They say the edge of the alarm pain. That is a limit. And go from there. Slowly and steadily increasing as you go along. Well life is like that. I want to do something and it depends on my existing pain and my existing energy and no…

How much Fibromyalgia awareness is out there?

There is this impression that a lot of people do not know about Fibomyalgia or understand it in the general public. I wrote an article in 2012 about How Much Awareness is Out There that suggested there was more than we think. I am going to post the reprint on that. I assume there is even more awareness now via all the 800 drug company commercials.

May 12, 2012: How much awareness is out there?

            Fibromyalgia is a syndrome primarily characterized by widespread chronic muscular pain, fatigue and insomnia.  It is a difficult to diagnose syndrome and equally difficult to understand.  People who suffer from the condition often fear they are being treated as hypochondriacs or are perceived as chronic complainers and lazy.  They often fear disclosing they have the condition to their employer and co-workers because they might face discrimination or a hostile work environment.  A decade ago many people would be hard pressed to say they had even heard of the condition.  How far has FM a…

Interview: Chronic Babe

I had the honor to interview a fellow blogger and in this case You Tuber as well ChroncBabe!

I would like to say, first, that I enjoy ChronicBabe's work immensely. ChronicBabe is a site that has a pretty motivational and positive frame of mind for coping with chronic illness. Her videos on every Wednesday called AWAP (As Well As Possible), Basically how to cope as best as we possibly can to live the best life we can. And isn't that exactly what we want?

To introduce you to it, I have some videos in the bottom of the post which I have referenced here and are quite awesome.  The How to get Motivated is particularly great to me. Simply because with depression and chronic pain I had some serious issues with motivation. However, treatment of the depression does help with that to some degree. Nevertheless, it was an excellent video. I highly recommend it. I actually spent quite a bit of time on the You Tube channel and picked out three for this post I thought were particularly great…

What obstacles are there to acceptance?

What do you think about acceptance? is what I think about acceptance but I have problems staying in that state of mind.
I think of it this way. Acceptance is where I want to be and sometimes I feel the 'vibe' of it and even the 'rational' of it but then certain things impede my existence in that state of mind.I grasp this is the pain I will have for the indeterminate future and I have to cope with that. We all want to accept, cope and manage our pain while at the same time looking for ways to improve upon the current status quo. This is the ideal. The acceptance. But I think it is also natural to encounter road blocks to this. Or it is for me. I am in a better mental place than I was due to a) some moderate pain management and most important b) depression medication. For me what impedes this my daily level of acceptance and therefore my capacity to cope Well are:

Vacation: Okanagan

I went on a week vacation into the Okanagan to my uncle's cabin. He is very generous and lets people stay there to book it up. More the merrier. I love that he does that. For one thing I have been able to go there twice now. It is so scenic and wonderful. We drove there 12 hours straight. This was a mistake.

 Day 1 was recovering from the drive. For me this meant the pain of the FM flare up. I ached from the neck down and areas that I had no idea why they would even hurt. To add insult to injury I had a massive IBS flare. In the bathroom, out, back in, out and... back in. But that did settle down that day. And the pain slowly eased the next day. So day one was Recovery. Plus I had a wicked migraines. So a day of rest after travel is always a good idea. Due to my migraine I could not indulge in alcoholic beverages but everyone got settled in and had themselves some liquid warmth. We chatted and had BBQ.

Day 2 I was still feeling the FM pain but it was just lingering and annoying but …

World Suicide prevention day

I am a suicide attempt survivor. Two attempts. One last year in August in fact. The first attempt I didn't ask for help. I thought with chronic pain suicidal ideation was normal. When it got worse and more intense. And the depression worse and more intense I just kept it to myself due to the stigma of depression and suicidal ideation. Since I joke, smile and laugh off my pain all the time and am stoic the rest there was no tell I was even depressed. No way anyone would know until that night. Then everyone knew. And that was a good thing, because I wouldn't have told them. I am more the suffer in silence sort of person. The second time I had been seeing a psychologist. Had recently switched to a new one in fact. He told me I should call 911 if I was suicidal. Or I should wake up my spouse and talk to him... because clearly my life is more important than his sleep, right? He would say something like that and I would say but he has to work the next day and I don't want to bo…