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Saturday, September 24, 2016

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 to take care of ourselves because it helps manage our mood. And our mood can take a real hit from the pain and stress. 
So I narrow my focus when I am in a funk. To focus on things that will make me feel better in any way shape or form.
  • Meditation: if I have skipped on my meditation I will make sure I Make the Time for it. Self-care is about making the time for ourselves. And meditation really clears my head of all that thinking about thinking. It de-stresses me a great deal. I know there are so many benefits listed for it but it just centers me and soothes me... and that is good enough. I choose mindful meditation that is guided, guided because then I don't get easily distracted. I also choose the ones based on breathing because I can really tune into my breathing such that I tune out all else. It is the only meditation that has worked for me. I tried others and they are just not a right fit, so sometimes we just have to find what relaxes us and what does not.
  • Bath: Usually I have an Epsom salt bath, but I am out of salts, so a nice soothing hot bath will have to do. Ease all those FM aches that have been so prevalent of late. There are so many ways to make this more relaxing of course. My preference is just to chill with some music.
  • Reading: One thing that never fails to relax me and de-stress me is just getting lost in a really good book for a few hours. 
  • Hobbies: Hobbies like coloring, video games, knitting and so many more... in my case writing fiction. (I suppose reading would be in here too but since I consider that to be practically a food group I put it separately). I will spend some quality time with me and my hobby as this just makes me feel good. Mood booster for sure.
  • General self-care- I do things when I am in a funk like make sure I don't spend all day in my pjs. Because it makes me feel mentally better to get dressed for the day. It is a thing I learned for depression and motivation... preparing for the day. So I ensure I do it when I am in a bit of a funk to ensure I don't encourage any depressive habits. Like sleeping all day and other things that will make me feel bad. Part of my self-care is always mood maintenance. So I have things on my list like get up on time, get dressed, eat, write in my gratitude journal... things like that.
  • Journalling- When I am feeling particularly unwell and feel like the pain is getting to me and my mood is suffering I make an extra effort to work on my mood journalling. In my previous post I expressed how my depression had me thinking some seriously negative thoughts. Well these need to be worked out on paper so I can logically work through them. It basically goes something like this: Put down the situation the thought occurred. The thought itself. Feelings that came with it. The type of cognitive distortion it is. (Magnification, disqualifying the positive, jumping to conclusions and so forth. I have a list, but these can be found on line or from your psychologist under cognitive therapy.) The more Realistic thought. And what the new feelings are now that you think about that new thought.
So self care for me means taking that time for myself to recharge and do things that I know will de-stress me. And doing things that are part of my health routine like meditation that I also know will help me relax. 
It also means decreasing outside stress factors during this time. Saying no to other things in order to get that down time that I need. When we are flaring, really fatigued or our mood is suffering this is not the time to be active and pushing ourselves. We need to hunker down, rest and take some care.
It means as well not feeling guilty that instead of doing the laundry you are meditating. No guilt allowed! None! So you didn't go to that family event or to your friend's BBQ this time, there is next time. So you didn't mow the lawn today, there is tomorrow. Just let that feeling that you must be productive every moment slide. That for some odd reason you ought to feel guilty for not doing something other than taking care of yourself.

Friday, September 23, 2016

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 the things to confront these ideas my brain comes up with but it doesn't change the facts. I am functionally useless. I can't work my job. I can't function. I can't maintain work. I feel hopeless because nothing Does change. I feel worthless because I am pushed to do things I am set up to fail at because I can't physically Do them. I personally feel like a worthless failure because this has been happening over and over again with no one seeing that hot damn she can't actually do this. And, yeah, it feels into my depression and, yeah, I do have issues with self-worth Now. 
And yes, I do ask myself what the point of a life like this is. I don't like feeling this way. I don't like failing people. Being undependable, unreliable, exceeding my pain limits and i hate the guilt when i fail. I hate this pushing the pain limits so I am in so much more pain than I should be, for what? To be socially acceptable? So a doctor doesn't have to put me on disability? 
I only works if it is achievable. Work is a great thing for us all. Being productive. Socially active. Intellectually stimulated. Pain diversions. It is good. But only if illness doesn't prevent it from actually being achievable. It keep pushing when it just isn't is some sort of torture. Not sure what kind, but some sort of soul crushing, mentally crippling and physically destructive torture. Only spent years proving how to fail. How to be worthless. And useless. How to be utterly destroyed by pain. 
I am tired of being punished for having chronic pain. Tired of medical professionals not understanding the effects this has on me. 
Of course with depression comes suicidal ideation. And I have had some of that. More like the typical ideation but it isn't the intensity I had before my medication. No repetitive thoughts. No Intent. And I do find I am able to control them easier because the medication doesn't allow for the massive lows. Which is why I am so glad I have it. Nevertheless, with pain comes suicidal ideation. Things like: I wish I didn't have to go to work anymore. Be in pain anymore. Be anymore. Because I have no control over work, my depression always tells me the only way out of that is to just die... and problem solved. No more work. No more having to put on a facade and pretend I am not in pain to push through the day by inches. Because I feel powerless and hopeless about it and always have. And of course we all want the pain to end, but that one is just a craving for an end to the pain, not an end. 
I will of course mention this to my psychologist because I am in that high risk category and I am under a lot of stress. I do not underestimate the power my mind has to twist things. Or the spontaneity of suicidal intent. Or the power of pain, never underestimate that. Nor do I think depression treated by a medication solves everything, because it doesn't. It just levels out the lows. You still have the depression. The thoughts. Lows, if not plummet like a rock lows. 
I could wish pain didn't affect me like it does with depressive reasoning as it does. But I find a hard time grasping how this existence is supposed to be anything but madness that we participate in for the sake of others. Well, that is my depression talking right there because that is a typical thing I say when depression but I am in a bit of a down mood at this very moment and in a lot of pain. I will be having a chat with my boss about my work situation tomorrow and I do not anticipate it going well. Little does he know I blame myself for everything even things that are not even my fault. It is easy to make me feel like crap because I make myself feel that way already. I am anxious about it because I don't want to deal with it. I wish I could just continue as it is. But I know they don't want undependable, unreliable, sick me. They want healthy productive, dependable and reliable. As any boss would.
We have to be careful with chronic pain and depression. They do not mix well. We always should see a psychologist to help us manage or moods and our pain. Help us with coping strategies. It is pretty vital to be honest. For a long time I thought 'I can handle these thoughts myself' and it led to s suicide attempt. So maintaining our mental and emotional health is just as vital as our physical health. And difficult when your brain is telling you the opposite. 

Tuesday, September 20, 2016

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 environment due to the fact I already manage my environment to do my writing, image creation and blogging. Ideally if I could find a niche on the net I would be more functional and productive. Such is life though. I am looking. And maybe I can supplement what I am doing now. 
I used to find with FM I had to adapt a lot in the workplace to function with it. There are a lot of tricks and tips I figured out to functionally work with FM. 
  • Limit multi-tasking to focus.
  • If you are having trouble focusing have a small snack of something like nuts, switch tasks for a bit, and then go back to original task.
  • Go for a walk-about every so often to prevent stiffness. Do office stretches to prevent cramping at desk. Also, of course, get your office desk situation looked at by human resources to be adapted as best as possible accommodation wise.
  • Write up resource binders for quick references. Things you Know but might need to look up on a fibro fog moment. Also have your Favorites sorted into folders and organized for quick access and have a lot of them, for same reason, easy access to resources. I had four binders for different topics and rarely used them, but every so often i did need them and it was perfect. Lots of policy in my line of work.
  • Double check work for consistency.
  • Always double check math.
  • Always type out notes and forms. Pain in hands can be a problems for many people with chronic pain. And for me I developed nerve damage so my writing became sloppy as the day went on and my hand would ache horribly if I hand-wrote too long. This will not be an issue for much longer with e-forms.
  • Snack all day, as it helps with brain fog
  • Keep hydrated.
  • Have a medium note book for well used easy reference look up items of those things that are easy to forget for some reason when you are in pain. I had these really weird things like how to calculate biweekly income to grossing up income... my brain would forget days of the year or how many weeks in a year. Weird things like that on off days. So I had a few simple things in there to just look at and go 'ah of course' and some more complicated ones. As well as important numbers. People I'd call for certain things. Your 'go-to' books for brain fog. 
Anyway I think migraines should be the same way and therefore I thinking working from home would be the best location to work.
  • Can control sound.
  • Can control light
  • Can control scents... no random people who horrific bubbles of perfume around them.
  • I can wear my larger migraine specs, that look too much like sunglasses for work but perfect from home and working.
  • I can use Flux on my own computer to control the blue light on it.
  • If I migraine is a 9 I could take a nap and work it down to a lower level and still be fine to get back to work when I got up.
  • I could start at a time that works better for me due to no drive time.
  • Also no drive time... which works up a migraine fast or aggravates one.
  • I can control my symptoms better at home. 

Sunday, September 18, 2016

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 functioning so you plaster on a facade and get your 'game face on'. We all do it, in different ways. And we all falter when we feel worse in various ways.

Saturday, September 17, 2016

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 FM subgroups. Those with biologic FM which has low depression and anxiety, but high pain, were showing significant decrease in the retinal nerve fiber layer in the temporal inferior and temporal superior areas compared to FM subjects who have depressive or atypical FM.

These tests are non-invasive, cost effective and can assist with diagnosis
Longer-term studies are required to evaluate the clinical application of RNFL measurements in FM patients as a diagnostic tool, to follow disease progression, to identify patients with worse prognosis or at higher risk for loss of quality of life, and to measure treatment effectiveness.,” PLOS
Fibromyalgia causes subclinical axonal damage in the RNFL that can be detected using innocuous and non-invasive OCT, even in the early disease stages. The impact on the RNFL in the temporal sectors is greater in patients with biologic fibromyalgia, suggesting the presence of neurodegenerative processes in this subgroup of patients with fibromyalgia.PLOS

Friday, September 16, 2016

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 panic and uncertainty in the future.
B) Change. I don't like it.
C) What if... everything. What if he doesn't like that job? What if working long hours sucks badly? What if they don't hire him there and there is nothing else here given the unemployment rate is so damn high? What if we don't make enough to budget our debt?
It is weird. I like a lot of stability. And change... I don't like it. And when it happens my brain immediately prepares for apocalyptic scenarios just in case. So if they happen I can be mentally prepared for it. And am never surprised, obviously. I rather don't comprehend a positive outlook since I have never had it, but his grounds me sometimes. I go negative and think of all my scenarios and he grounds me with a few frank practical points. And then I go 'oh right, I suppose that is true.'
Thus my point. I need to do the work for gratitude journalling. My brain needs the positive reflection on my day after working on all its negative action it does. It needs to ground itself in some positive reflection on things in the day I am thankful and grateful for. Because I am. So I focus at night on three things I am grateful for.
Today here are 4:
  1. Spending time with my mom shopping for my spouse and book shopping. Book shopping being one of my favorite all time things to do. And grateful to spend time with my mom Always.
  2. Celebrating spouses birthday with one of our friends we have not seen in a while today. Thankful to have the company of a friend we have not seen in a few months.
  3. Thankful for my spouse and he ability to calm my nerves when I worry. There is just something calming about his view of the world sometimes. I mean, he does internalize stress, but when it comes to problems he is far more straightforward and practical. Whereas I am lets worry for a long period of time, think of worst case scenario and potential solutions to all of them and not for a second think anything will work out for the best.
  4. For the awesome books I picked up today. Look like good ones! And one was on sale! 

So what are the benefits of gratitude journals?
  • They do in fact lower stress levels
  • They help at night to calm you down, as you are focusing at the end of the day on positive reflections of your day or life. And not stresses and worries.
  • Helps you gain perspective on what in fact matters to you a great deal in your life and maybe what you want to encourage more of.
  • Boosts mood which I why I am supposed to do it. 

On a side note, this is also why I need meditation. More stress relief as well. Calms my brain a bit. And I can do that any time I want to.

Thursday, September 15, 2016

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 now time I may have after... and therefore where that limit may be. So I give it a go and nudge it a little to see if I can in fact do that thing that day or not. I learned limits are there to remind me not to exceed them, although it happens sometimes, and not so much there to limit my living my life.

Wednesday, September 14, 2016

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 awareness come today?

American Chronic Pain Association survey

            According to a survey done by the American Chronic Pain Association in March 2012 92% of the general population in America has heard of Fibromyalgia.  This is a substantial increase in FM awareness in the general population, however, the survey also suggests people do not understand the difficulties involved with everyday tasks.  For example, people were asked to indicate activities they believed people with FM would have difficulties with and people with FM answered the same survey.  There was little discrepancy in the category of ‘do yard work or clean the house’ but there was a significant discrepancy in categories like ‘watch a movie’ or ‘drive a car’.  The reasoning for this no doubt that pain must be caused by doing activities but with cases like FM it can be just as painful to be still or in one position for too long.

Do people know who FM afflicts?

            When it comes to who can get FM the same survey suggests people are not too clear on the idea.  44% said they were not sure who was impacted by FM and one-third said older women.  When looking at FM prevalence the majority of FM sufferers are indeed women, however, men suffer from the syndrome as well.  Diagnosis can come at a young age but there is an increase in prevalence of the condition in aging populations.

How are the FM disabled perceived?

            What is most interesting about the ACPA survey is how the general population perceives those who suffer with FM versus how they perceive themselves.  The study states that people with FM believe society sees them as ‘complainers’, ‘weak’ and ‘lazy’.  Whereas the results indicate the general population sees them as ‘courageous’ and ‘strong’.  There are a great deal of reasons for FM sufferers to have this impression.  People who have had FM for over a decade have been exposed to doctors who have denied the existence of the condition or refused to treat them.  They have been told they were ‘stressed’ or it was ‘all in their heads’.  This leads, unfortunately, an unwillingness to disclose details to health professionals for fear they will be labelled as hypochondriacs.  Others fear they appear as chronic complainers because their health concerns come up in every day life so often.  They fear co-workers might believe they are using their health as a reason to ‘get out of work’ or as ‘an excuse’.  They may have dealt with hostile work environments or family members who have had difficulties coping with having a loved one with the illness.  They also tend to believe society, employers and family all have expectations of them, of anyone, that they are not fully capable of living up to anymore and the guilt of that is a heavy emotional burden.  All of this leads to the general impression that the average person would have a negative view of their condition.  Whereas the general population sees people coping with a chronic pain condition, perhaps suffering financial and emotional burdens because of it, and yet still able to get through daily life and function. 
            Pain may be a private experience and while it can be doubted by the outside observer we, as human beings, have the capacity to empathize and as such we can grasp the struggle someone is going through without having to feel the pain ourselves.  It takes a great deal of strength and courage to cope with a complex, chronic pain syndrome like FM and clearly people are able to empathize with that struggle.  It is profoundly encouraging to see that result to FM awareness even if only to bring to light to FM sufferers that all people do not perceive them in a negative fashion.  Clearly there is more awareness of fibromyalgia as a chronic pain condition even if the specifics of how that pain affects daily living are not too clear.  However, FM awareness as a chronic pain condition is different than FM awareness as a syndrome.  Very few people understand the complexity of the syndrome as a whole or the fact that there is a great deal more involved that just pain.  Awareness campaigns that bring to light all aspects of the incurable syndrome not only help with public perception, which decreases decimation and bias, but can help push for research and eventually a cure to this debilitating condition.

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