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? As an introvert I am not exact skilled at making friends... usually it takes a long time to even call someone a friend. So got forth and what? Kidnap someone and make them be my friend? Errr. No idea what they thought I was going to do to get these friends because I had no idea.
Turns out my spouse, who is also introverted, is more skilled in this department. He introversion is a little lower than mine and his other traits enable him to want to interact and help others. Makes him more approachable. So he made us some friends. We play cards at one friends house. Go to Karaoke, where we listen to our friends sing because neither of us do. We have gatherings for BBQs and backyard fires. And do special things once in a while. It is a small group and that is just what we want.
And it has had a great impact on me. There is this idea that we should not fear our pain. That we should not fear doing things in pain. Saying No all the time and no-ing ourselves into nothing. And in a sense when I went hermit mode I was doing that. I was saying no because it would 'make the pain worse' or' trigger worse pain' or 'I had no energy' or 'it would cause a flare up'. And I wasn't living my life as a result. 
Now I don't let the pain dictate what I want to do. I let it choose my limits and how prepared I need to be, but not stop me from doing it. If the pain is within reasonable limits. If not, then I have to cancel and good friends, get that. But I try not to cancel, just be prepared for my pain level and limits. 
What is important is I am in pain and would have been in pain whether I went or not. So i would decide to go and enjoy myself, have some laughs, distract myself from the pain with the chatting and laughing and have a good time. As long as it isn't for too long and as long as the pain doesn't exceed a certain point. I leave early if the pain does get to that peak point and no one looks down on me for it.
The benefits to me are great. I feel less isolated. I feel more connected to the world around me. Connected to people again. It may help with mental and emotional well-being. I know when i am out I feel happy. I laugh and enjoy myself. It is a pain distraction for the most part. 
I think it’s important that you make even casual friends aware of your pain. This will inform them of the reason behind canceled plans, leaving early or not always being fully attentive when in their company. Perhaps even more importantly, it will take the stress off you of having to constantly seem “pain-free.”
In operating this way, you will not only be informing others of the chronic nature of your condition, fibromyalgia. You will also be including them in your particular process of socializing, which will absolutely result in a more relaxed, more enjoyable social life for you.
When you enroll your friends in exactly what it is you’re dealing with, you’ll create a more stable environment, inherently fostering friendships based on acceptance rather than expectation.
You may not fully believe this but your friends will feel so touched and trusted by your honesty they’ll be entirely accommodating to your needs.
As you actively pursue “enjoying” your social life more, work on being kinder to yourself. Be careful not to bite off more than you can chew, and pace yourself. Evenings out need to be more structured for you. It is totally reasonable for you to be very specific about how you spend your time in social situations, so as not to exert more energy than needed.Chronic Pain and your Social life
Socializing has helped me immensely with my connection with the world again. And I am grateful for that. But I am very aware I have to not exceed my limits and pace myself. Sometimes our friends want to go out on a Thursday for Karaoke and I say no because this is a day I am recovering from work and I have to work the next day... not a time I should be pushing my limits. But going over there on a Saturday to play cards? Right in my area of fun that is not taxing on me physically at all. 
It got me out of hermit mode. I got my spouse out of hermit mode. And I am feeling like I am living some sort of life. That is until I returned to work. Now I have the same issue I had before. The recovery time from work makes me pretty useless, tired and in a lot of pain. I have no desire to do anything. So it is harder since I returned to work. But I am trying to not lose something that helped me feel more human again.

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.

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. 

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. 

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.

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

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.

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.

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.

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 topics that I enjoyed.

Let's get down to some questions,

First introduce yourself to my readers a little bit. What sort of chronic illness(s) do you cope with and how long have you been coping with it?

I was first diagnosed with fibromyalgia in 1997, and at first I was really freaked out, I feel like my life was completely over. But then after a few years, I started to learn how to take better care of myself and how to achieve the things I wanted to even though I had a few chronic illnesses (because I also developed anxiety, depression, Raynaud's phenomenon, asthma, and a bunch of other things) and I decided that I needed to take what I was learning and help other people so I created, a space where I could blog about my experience, share resources, and create community.

What are some tips to coping with chronic illness?

The first thing I like to talk to people about when it comes to coping with chronic illness is the concept of acceptance. Some people think that acceptance means giving up or giving in to the illness, but I don't see it that way. I see it as excepting the parts of the chronic illness experience that I can't change so that I can stop fighting them, because I need all the energy I can muster to take good care myself and fight for the things that I can change.

I also think building a strong support community is essential this means having a diverse group of people you can call on to help you in times of need. This could be as simple as having a better relationship with your romantic partner, and that' something you can work on through therapy and shared efforts in building better communication. It can also mean building stronger friendships with coworkers and colleague so that they understand your experience and are more compassionate when you need to have accommodations at work. 

And finally I think that we can't under estimate the value of a consistent self-care routine. I have a short list of things I must to do every day to be the best Jenni I can be no matter how much I'm flared up. These include bathing, drinking lots of water, putting on regular clothes, meditating, taking my meds consistently and on time, connecting with people I love, listening to music, yoga, and sticking to a regular sleep schedule. By following this routine every day I know that I'm doing the basics that I need to keep myself feeling the best possible about how sick I am.

How do you think we should cultivate resiliency in ourselves to cope with chronic illness? How do we bounce back?

Yes! Resiliency is so essential for ChronicBabes. Resiliency is our ability to bounce back after a fall, after a road block, after disappointment. That daily routine of self-care that I mentioned it's really a big part of my resiliency, because I know that by doing that not only am I keeping myself as healthy as I can be, but I'm showing myself a lot of respect by following that routine. That daily respect cultivates A feeling of worthiness and strength and that really helps keep me resilient when rough times happen.

I watched your video on 'How to get Motivated' and it was a very productive way to look at getting motivated. Chronic pain, fatigue and depression can all get in the way of motivation. What are three tips to help people start to get on track for motivation?

One thing we sometimes struggle with in the chronic illness community is recognition that depression can get in the way of our motivation. So I always encourage people, If you're not feeling motivated to work hard in the face of struggle, to consult a mental health professional. Because there's a chance that they may have depression which is common and not anything to be ashamed of, and is very treatable.

Another thing that keeps me motivated is being very clear about the benefits of achieving the thing I want to do so instead of saying, For example, I have to be motivated to ride my bike every day for 10 minutes just because. That's not very helpful! Instead I think to myself YAY I get to ride my bike for 10 minutes today and by doing so, I am getting stronger, which means I get to ride my bike this weekend with my fiancé which is a fun thing we can do together! By focusing on the outcome, the benefit, of the thing that I'm having trouble feeling motivated to do so, it gives me that extra boost, that inspiration that makes me want to achieve the same even though I know it will be difficult.

The third thing that really motivates me when things are tough, and this is not the one I always go to but it is something important to remember, is to think about the negative consequences of not doing the thing that you're putting off. If you understand that by not doing something you are causing long-term harm or increasing your limitations that can be a great motivator!

Do you think self-care is important and why? What sort of self-care do you use on a bad day?

Self care is essential! I have a daily routine which I described above that I do without fail and on the rare days when I don't follow my routine, I feel like crud. On days when I have lots of energy I added an extra things like maybe I'll do a face mask or give myself a pedicure. On big flareup days I might go for the bare essentials, like instead of taking a shower I'll just wash my face. Or instead of doing my regular yoga routine plus a workout, I'll just do my regular yoga routine but I'll do it in five-minute bursts instead of doing all of 20 minutes at once. I think self-care is really important on a bad day, because it helps us feel human, it helps us feel like whole people instead of just sick people.

Our self identity takes a hit when we are chronically ill and how do we adapt to our new identity or find our new selves?

I agree with this and I think it's so important that we continue to pursue the things that we love even in the face of chronic illness. One way we can work with this, is to talk with our friends and ask them to help keep in touch with us, and motivate us to pursue hobbies and social interests that keep us connected with other people. I also think it's important that we make a space and time to pursue activities that have nothing to do with illness.When we first get sick, it's common to spend a lot of time in forums and support groups, and while those can be very helpful, they can also isolate you into that community and give you no other outlets for expression or activities. I think it's really important to find balance.

People often get comments about their illnesses. Either 'helpful' advice or suggestions on what they are doing 'wrong' to even people telling them they shouldn't be on all 'those medications'. There is a vast array of things we hear from people, family and loved ones. What is the best ways to deal with these comments without taking them personally or getting defensive?

Well you basically answered my question with the last part of your question, which is that I really recommend the people not take these suggestions personally. I have a video about the set my YouTube channel which I recommend that people go watch but in the meantime I think it's good for people to practice responses so that they're ready when they're confronted with the surprise suggestion that triggers them and makes him feel upset. For example, you may hear some crummy advice from an acquaintance, and a good response may be "thanks for that idea, I appreciate that you care. I've got this under control. How are you?" Sometimes if you just turn the conversation around to the other person, it ends the awkward moment and you can move on.

A lot of people work with chronic illness and this can be quite a strain. Any tips or comments addressed to people who work that they might find helpful?

This is a tricky question because there's so many different kinds of illness, and there're so many different kinds of work.I think it's really important to people know that they are allowed to ask for accommodations in the workplace and that if they are in the workplace that will not accommodate them, it may be time for them to seek out some other kind of position. One thing that a lot of people with chronic illness struggle with, is that if they're unable to do the job they've done for a long time, they may feel like they can never work again. But this is not true! It simply means that they've got to rethink your concept of work and focus on the values and the goals that they've enjoyed in their work in the past, so that they can seek out a better way to work that serves them and still takes good care of them physically.

I absolutely loved your video 'Embrace the Suck'. Do you think sometimes we don't push within our limits sometimes and embrace the suck? What would you recommend to people to embrace the suck!

Definitely, sometimes when we're sick for a long time we get fearful, and we are afraid to pursue new things or push ourselves because we don't want to cause a flare up. But sometimes we must push ourselves because that's the only way we learn how we can do more, and that's the only way we can figure out what our are new limits are, because those limits are going to change - for some of us - all the time. And if that means there are moments when things really suck, then yeah, you've got to embrace suck.

And on the other side of things What do you do when we flare up and exceed our limits?

I'll just speak from my experience and say that when I flare up, I usually try to cut myself some slack. Sometimes a flare up for me is random, but sometimes it comes from something I know I did, like too much exertion, too much dancing, generally having too much fun! So I try to implement extra measures of self-care on those days and give myself a lot of compassion and understanding and remind myself that we're all human Oh we can do is our best every day and if we screw up in some time push pastor limits it's okay it's nothing Should be ashamed for mad at ourselves about.

Here are the videos I referenced in the interview. Feel free to check them out. I know I for one will be using the term 'Embrace the suck' all the time from now on. Love that. I embraced the suck at work today in fact. ;)

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 not nearly as painful. Digestive system and IBS flare flared again but was getting back to normal. Migraines were severe for the week, with random triptan induced breaks in there. One good day all on its own is the day I drank me some wine. You manage the migraine as best you can when on holidays. Take the edge off and do what you can. I was really dopey and nauseated for them, but I managed and triptans gave me a little break in there

Things I did do?
  • Relaxed
  • Chatted
  • Had a fire
  • Watched some movies
  • Played some crib and lost horrifically
  • Went to a winery called ‘See ya later’ and sampled their white wine and bought a bottle. Which I indulged in on my good night I had there. Apparently I can have about one large glass and that is all to get me ‘happy’. Don’t have much of an alcohol tolerance.

  • Went to a great ice cream place and had some awesome ice cream
  • Went back to the ice cream place about bought some fudge. Mmmm
  • And read a good book
My spouse did some fishing and went out on the kayak quite often. And we took scenic routes on our drives to the winery and the ice-cream place.

 Here is the thing about vacations. I would have been in migraine hell anyway. More actually. Because I would have been working. So this is a vacation from the intensity of pain from working with a migraine. From putting on a ‘facade’ and smiling through the pain. From having to ‘function’ through the pain. And going to a place I find soothing, relaxing and beautiful. Where I can be with people I enjoy and do things I like, where they can do things they like and we can all have BBQ and chill. Yeah, the pain comes along for the ride… but as I said it was going to be there anyway. Might as well have a break from the work aspect and choose a wonderful environment and the people you are with and relax. You do have to pace yourself, moderate you activities and stay within your limits of course. Which is why I am pretty mellow on vacations. Choose a Thing to do a day, and the rest is casual depending on mood and energy. At the cabin though it is all really dependent on mood and energy. Am I in the mood for a road trip for fudge? Or to read my book? Maybe watch a scary movie? Chillaxin vacation. Just what a need from all the

What do you think about acceptance

I know acceptance means different things to different people. I want to tell you what it means to me but I am going to build up to it. 
About 3 years ago and for a good 7 year period of time I lived in a real Hermit mode period of my life. I worked, came hope and collapsed on the couch. We didn't do anything, go anywhere, have any friends, socialize in any way. My pain was unmanaged and I was in survival mode. I was just doing what was necessary and no more. Get to work, get home. And getting to work was one I often failed at. Too many times. I went of many leaves as well in that time frame. My pain wasn't managed by medication. My suffering wasn't managed. And I developed depression that wasn't treated. In there I had one suicide attempt as well.
If someone had asked me what I thought about acceptance I would have said 'I accept it is my job to suffer."
Four years after I wrote this:
Pain is dangerous.
People should understand that pain is dangerous. Sometimes it isn’t I don’t want to move today. It is I don’t want to live today.
Physical pain, by itself, is a suicide risk. Living with it constantly, with no end date will be the hardest damn battle of your life. It is a battle hidden behind smiles and ‘I’m fine’s’ and 'I’ll push through the pain’. It is a silent battle and a silent scream. No one will give you an award for it. No one will notice it. People will doubt your pain. People will accuse you of being lazy of having no time for them. Of making excuses to get out of things. You will fight, and fight, and fight and that is what you will get for it. You can expect mediocre medical treatment or no medical treatment. People will expect, though, that you are addicted to painkillers or drug seeking. Expect that. Fight the good fight. Inches of life. Fit in life where you can. Do not listen to people. People know nothing about this existence you find yourself in. Find joy where you can. Live in the pain gaps.
And understand… pain is dangerous. Do everything you can to maintain your mood. Do everything you know that helps maintain your pain. Do whatever you can that works for you. If it works for you, do it.
I was out of my survival mode and understood the depth of it. Understood the time it had taken from me. The risks of it. And also understood I wanted a semblance of a life back. I went to the pain clinic. I went on tramadol slow release. On Abilify for my depression. To the psychologist there who specializes in pain patients. To their pain class. See their pain doc every 6 months now.
And now I exercise regularly. I set small daily goals for myself, and write them down, with one daily accomplishment. I do a gratitude journal in an app called Happier. I do mindful meditation regularly. These things were things recommended by the pain clinic. Mostly because they all help with mood regulation. I also do a though journal which helps with thought distortion which helps with the coping process because we can sometimes distort the things we tell ourselves. Especially since I have depression.
Here is what I think about acceptance. I believe acceptance is acknowledging the pain you have currently is going nowhere. Treatment may change it to a degree in the future, but acceptance is dealing with life as it is until things change, and then dealing with it as is then. You still strive for treatments and methods to improve pain, of course. But you accept you also have to deal with existing pain in order to have a life with it. Because you want to adapt in such a way as to be able to have a life. To be able to do things like have a social life, visit with family and friends and go to various events. You want to be able to go on a vacation if you want to. To work, in some variable degree, if this is possible in your case, but if not then to have something that fills that void for you. We don't want to be fearful and hopelessness of our pain such as we do not engage in the world. But we also want to pace ourselves, moderate our activities and stay within our limits. Accepting we have pain so when we do do something, we have to be prepared for anything our illness may crop up... so bring things with us we may need. Never go unprepared. Go gentle and mellow into that world. Embrace the tortoise! 
Accepting while there are limited things we can do about the pain treatment wise we can do things about our suffering. And working on reducing our suffering will help us cope with our pain experience. This will then help us to be able to live a life. 
So acceptance to me is getting our of that survival mode and then learning ways to manage my suffering so that I could accept the pain I am currently in to have a life, in the limited way I can as long as I pace, moderate and stay within my limits. 
So what glorious moments can we win from life?

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